Posts

The Best of 2018

As 2019 begins, we would like to take a moment to highlight a few of our most popular posts from 2018 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2018 one for the books, such as Marie Ennis-O’Connor, Casey Quinlan, and Jennifer Lessinger. Your efforts to Patient Empowerment Network are greatly appreciated!

January

5 Ways to Have a Productive Day With a Chronic Illness

This post is designed to stop you in your tracks, and provide you with practical ways to have a productive day with a chronic illness.

Patient Advocacy: Understanding Your Illness

Marie Ennis-O’Connor teaches you which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.


February

The 7 Habits of Highly Effective Patient Advocates

This blog from Marie Ennis-O’Connor will help you to get motivated to reach your patient advocacy goals.

Negotiating Cancer: Tips From One Who’s Done It

Stefanie Joho shares what she has learned from her cancer journey and how it made her become a patient advocate.


March

Grief, Loss, and The Cancer Experience

Marie Ennis-O’Connor shares her top ten ways to cope with cancer grief.

What’s a Patient Scientist?

At the  Patients as Partners conference in early 2018, the term Patient Scientist was introduced and Jack Aiello shares what that means for him.


April

Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

Marie Ennis O’Connor explains how to find, create, and use health-related hashtags to boost your patient advocacy.

MPN Patient Story: Ruth Gerwin

Ruth Gerwin shares her story and how MPNs have affected her.


May

What Does It Mean To Be An Empowered Patient?

Marie Ennis-O’Connor explores what it means to be an empowered patient today.

Patient and Advocate Profile: Hannah and Carrie Ostrea

Carrie Ostrea shares her daughter’s story and what lead her to start the Little Miss Hannah Foundation.


June

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience to raise awareness and influence people to create a desired change. Marie Ennis-O’Connor shows you the steps you should take to create a compelling message to get your key issues across.

Patient Profile: Peter Blaze Corcoran

Prostate cancer survivor Peter Blaze Corcoran shares his story and what his disease has taught him.


July

Sleep Deprivation Caused By Cancer

The average adult requires at least 7 hours or more of sleep each night to maintain general good health and well-being, but that can be a challenge for cancer patients. Here are some tips to improve your sleep.

Coping with Scanxiety: Practical Tips From Cancer Patients

Cancer patients often experience anxiety about upcoming scans. This blog shares some practical tips for how you or a loved one can cope with it.


August

My Breast Cancer Story

Dr. Janet Maker shares her breast cancer experience and how she had to become an empowered patient.

Patient Advocacy: 15 Winning Ways to Attract More Readers to Your Blog

Having your own blog is a powerful way to boost your online advocacy, but how can you get more readers? Marie Ennis-O’Connor shares her 15 tips.


September

A Patient Engagement Manifesto – 6 Principles of Partnership

Marie Ennis-O’Connor discusses the need to find ways to engage patients meaningfully in healthcare design and then shares 6 guiding principles you can turn to when you are next called upon to take on a patient advisory role.

Reinventing the Clinical Trial: Start at the Ground Level

“We’re still stuck on the slow train when it comes to really reinventing the clinical trial.” In this blog, Casey Quinlan questions how we might challenge that stasis.


October

Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other

Breast Cancer Awareness Month is famously associated with pink everything – ribbons, clothing, yogurt, you name it! In her latest blog, Marie Ennis-O’Connor goes beyond pink and shares lessons learned from fellow breast cancer patients.

Patient Profiles: Breast Cancer Part I

This is the first blog in a three-part series that took a closer look at five breast cancer survivor stories and one caregiver in honor of October being Breast Cancer Awareness Month.


November

Returning to Work After Cancer Treatment Part I – Preparing the Ground

Returning to work after cancer diagnosis can be difficult and often brings mixed emotions. Marie Ennis-O’Connor shares practical solutions for helping with your re-entry into the workplace.

Nancy’s Lung Cancer Journey

In honor of November being Lung Cancer Awareness Month, our board member, Nancy, shared her lung cancer story.


December

5 Ways to Detect Cancer Before It’s Malignant

Like in most diseases early detection plays an important part in the prevention and intervention of diseases, so this blog show you 5 ways to help detect cancer.

Returning To Work During or After Cancer Treatment: Part 2

In this second part of a three-part series, Marie Ennis-O’Connor discusses common concerns on returning to work after a cancer diagnosis.

Self-Care During Illness: 
Tips for Cancer Survivors

Self-care is essential for all of us; it’s something that allows you to take a mental health break while also making sure your body is in good shape. After a period of stress or anxiety, you need a little time to heal and get yourself back to a good place. This is especially true for cancer survivors, who battle stress, physical pain, anxiety, depression, and worry every day. Cancer comes in many different forms and affects the body and mind in different ways, meaning no two people will handle it the same way. What works for you when it comes to coping may not work for someone else, and vice versa.

Fortunately, there are many different ways you can learn to cope with your feelings and take a time-out. From daily exercise to learning to listen to your body’s cues, self-care involves a variety of activities for you to choose from. You may choose to practice self-care alone or with a close friend; you can do it from the comfort of your own home or at the gym. Whatever makes you feel good in a healthy way is classified as self-care.

Keep reading for some great tips on how to practice self-care as a cancer survivor.

Take Your Medication as Directed

Most cancer survivors need medication to help with pain, nausea, and other symptoms that will make daily life a little easier. Some take several different medications every day, and it’s imperative to keep track of these and make sure you’re taking them correctly. You might use an app on your phone to help you remember what time you need to take specific pills, or invest in a sorter that will keep all your medicines measured out for each day.

If you feel that the dosage on a medication isn’t right, talk to your doctor immediately rather than attempting to change the dosage yourself or discontinuing use. Because many of these can be habit-forming, using them correctly is important not just in maintaining your health, but because opioids can be highly addictive and can cause many more issues than they treat if used incorrectly.

If you’re concerned about using prescription medication like opioids to treat your pain and nausea, it’s worth talking to your doctor about the option of CBD. It’s a natural, non-narcotic and non-hallucinogenic treatment that provides relief for many of cancer’s most troubling side effects, such as muscle pain, nausea and anxiety. As with any treatment, be sure to consult your physician before giving it a try.

Eat Well

Sometimes, medication or chemotherapy can interfere with appetite, making it extra important to make sure you’re eating well when you are hungry. Try to eat small snacks throughout the day made up of whole, unprocessed foods, and remember to stay hydrated. Talk to your doctor about the best foods for your body’s needs, and consider hitting up the farmers market for fresh produce as often as you can.

Make Your Needs a Priority

Many individuals who are faced with a battle against cancer find that they are so focused on the people around them that they rarely take time out for their own needs. You may be worried about how your family will pay for treatment or how your illness is affecting your children. While these are valid concerns, one of the best ways to help ease your mind is to take a little time for yourself. Go for a short hike, sit down with a good book, or lie in bed and listen to your favorite music. Learning how to slow down and reset your mind isn’t always easy, but it’s necessary.

Try Something New

As long as you have the energy for it, now is the perfect time to try something new. Finding something that is enjoyable and allows you to shake off worry or anxiety for a while is a great way to take care of yourself. Whether you want to learn a new language or travel to a place you’ve never been, don’t put it off. Just make sure your health won’t be affected negatively, and talk to your doctor before making any major plans.

Taking care of yourself can be a big job, so remember that there are only so many things you can do in a day. You might try yoga and meditation during this time to learn how to practice mindfulness and focus on the present; this can help you cope with stress in the moment so that you can turn your mind to more important things.

Patient Cafe® CLL – October 2018

Dealing with a Mid-Life CLL Diagnosis

Patient Cafe® CLL – October 2018 from Patient Empowerment Network on Vimeo.

Four Chronic Lymphocytic Leukemia (CLL) patients got together to share their story and advice on dealing with a mid-life diagnosis, and how that can affect your personal and professional life.


Transcript:

Esther Schorr:
Hi there. Thank you for joining our Patient Cafe today sponsored by the Patient Empowerment Network. I’m Esther Schorr, and today I’m meeting virtually with a group of CLL patients, chronic lymphocytic leukemia, who are all facing this diagnosis during their middle years. So of course there’s no really good time to be diagnosed with something serious or diagnosed at all, and it’s never easy and it’s never welcome, but in our middle years the career ball, your personal life direction, the people that you indirect with, the relationships you have are already pretty well in progress and a diagnosis can feel as though personal and professional life kind of had a monkey wrench thrown into it and that your plans for life could be derailed.

Our guests today are going to share their stories and advice about how they’ve been able to deal with a midlife diagnosis. So just before we start I want you to know that this conversation is never, would not be a replacement for medical care, medical advice. Each patient’s situation is unique, so I really encourage you to consult your own doctor, your own medical team for the treatment that’s right for you.

So first of all I just wanted to tell you a little bit of where I fit into this conversation. My husband, Andrew, who you’re going to meet in a second, was diagnosed with CLL in his mid-forties, and at the time we had two small children.

Also, we were in the middle of growing a fledgling business that then became what we do now in educating patients. And we were devastated. It was scary. We didn’t know what the complications long term were, we even wanted to have a third child at the time, and certainly, like most people, we didn’t know anything about CLL. We didn’t know. And the word “leukemia” was very frightening. We were very lucky at the time. We had supportive family and friends, and we found great medical care through networking with other people on the internet, through online support groups, etc. And ultimately Andrew got through a clinical trial, went into it, went through the trial and had a long remission, and we’re very, very thankful for that.

As a care partner, I will tell you it’s taken years of ups and downs for me emotionally to come to terms with the fact that we can’t really live our life based on what‑ifs.

And we’ve gone on together with our friends, our family, and we just live our life. We now live in southern California near the beach with our dog, and we have three grown kids who are very supportive, and‑‑but we’ve learned a lot along the way. And so I’m hoping that this discussion will help those of you that may be in similar circumstance to kind of come to a place where you can move on with your life and feel empowered. Is that’s my story. I want to have each of our guests introduce themselves. So why don’t start. Jeff, Jeff Folloder, why don’t you start.

Jeff Folloder:
Hi. I’m Jeff Folloder from Katy, Texas, which is just outside of Houston. I am a CLL patient, and I am also a Patient Power advocate, champion, evangelist, pick one of the terms, whichever one you’re comfortable with. I was diagnosed at 46 years of age.

I absolutely, positively was not expecting to hear my doctor say something’s wrong and you need to go see a specialist. Walked into the specialist’s office, saw a bunch of old, sick people in there, said this isn’t me, and the next day I was told, yes, it is. So my diagnosis did absolutely come as something of a huge shock. It was like a sucker punch in the gut, and it took me a bit of time to figure out has comes next.

I was very fortunate to get connected with some folks here in Houston who got me enrolled in a clinical trial after two, two and a half years of watch and wait. I got six and a half years of rock solid remission out of my clinical trial. This past July I have recently relapsed, and I’m looking at it right now quite frankly as no big deal.

I’ll get treated when it’s time to get treated. In the meantime, I’m driving all over the country, I’m doing all kinds of things. I’m living life to the fullest, and it’s actually okay to take a nap.

Esther Schorr:
Thanks, Jeff, that’s perfect, and we’ll talk more about that journey for you in a minute.

Jeff Folloder:
Absolutely.

Esther Schorr:
Let’s try the other person, Andrew, and then we’ll hit Michelle and Jeff.

Andrew Schorr:
Esther, thank you for hosting this program. So you recall vividly I had a routine blood test at age 45, and the doctor initially said when he tested my blood, oh, you’re probably fine because I had been getting some nosebleeds, and then he called me, and he said you’re not fine. What is it? Leukemia. What is leukemia? I wasn’t even sure it was a cancer. And I also didn’t understand the difference between acute leukemia and chronic leukemia. And so what knowing I’d heard somewhat about acute leukemia then, Esther, you and I, remember, we walked in the park in a sunny spring afternoon near Seattle, and I thought I was dead. And I was saying at 45, we have two kids, hopefully you’ll be well provided for, and I had life insurance. Is that it?

Well, fortunately, it hasn’t worked out that way, and I got a long remission, pretty long, Jeff, 17 years, actually and then needed CLL treatment again many months ago, and that’s worked well. So just like what Jeff said, knocking it back, going on with my life. We had a third child, but when I was first diagnosed I thought it was over, but now looking back I know it was really just the beginning, but maybe seeing life a little differently but living.

Esther Schorr:
You thank you. Thank you for that, Andrew. Michelle, tell us a little bit about you.

Michele Nadeem-Baker:
Hi. I’m Michele Nadeem-Baker, and I’m a Patient Power advocate as well and a Patient Power patient reporter. And I have to say, as Jeff had mentioned, I was in shock, absolute shock, no awe, but in shock when I was told that I had CLL. My PCP like everyone else’s had said that my white blood counts were a bit off, told me to see a hematologist, and I was very naive not realizing hematologists generally went along with oncology.

Went to the local medical center when I lived in Miami and was not told I had CLL, and then I was called back in for when some other test results came in, the flow cytometry came in, which I now know but at the time had no clue what that meant, had no clue what the doctor was talking about. He didn’t even‑‑he said I had the C word. He didn’t even say cancer. And then he said CLL. I had to ask what that meant.

And that’s why I’ve been such an advocate for communicating better for patients because I was a bit dumbfounded as well as in shock. He had no information to give me, and I have since tried to learn a lot and become an advocate for other patients. Andrew is the first person I met with CLL. I reached right out to him, but it was very tough.

I had been married at that point for only two years to my now husband, and it was a real, real shock. My career went into a tumble, a turmoil, and it got put on hold for a while. So I was in watch and wait for about three years. In that time I moved back to Boston, so I could be seen at Dana‑Farber. And as both Jeff and Andrew said, life does go on. You just‑‑you have to get into kind of a new step and a new rhythm, but life does go on thankfully and thanks to all the research that’s been going on.

And I’m still on a clinical trial. Still in remission. Fingers crossed that will continue. And I’m happy to chat about anything that will help.

Esther Schorr:
Right. We’ll have a lot to talk about, I think. Thank you, Michelle. And the other Jeff, tell us a little bit about where you’re from and where you’re at now.

Jeff Brochstein:
Will do, Esther. Thanks again for having me. Really, my story follows much of the same path. Diagnosed at a fairly young age, 38 years old. I discovered a small lymph node in my neck while I was washing up one Sunday night back in late 2012 and got it checked out and couple months later high white blood cell count, and another high white blood cell count when I was tested again, and I was diagnosed. And really from there I just buried myself in just doing all the research and all the data gathering that I could.

Maybe about three, four months after diagnosis I discovered Patient Power. I found Andrew. I gradually started corresponding with him. From that point on, the next four and a half years I was in watch and wait until probably late 2016, early 2017. Reached out to Andrew again at that point. We had a conversation about FCR, which my doctors here in Atlanta had been talking to me about. Decided to go to MD Anderson after seeing some of the videos on Patient Power of Dr. Keating, Dr. Thompson. Went there to see actually Dr. Thompson who had mentioned ibrutinib and some of the other targeted therapies that had been just approved for frontline. And came back to Atlanta and my doctor and I kind of came to the conclusion that maybe starting with one of the targeted therapies was probably best me being unmutated.

And started ibrutinib March 2017 and lymph nodes went away after a week and kind of been in remission pretty much ever since and everything’s going well.

Esther Schorr:
Thank you, Jeff. And all of you, there are some recurrent themes here that we’ll talk about, but obviously this whole idea of coming into the middle of your life when a lot of things were already in play was something that you had to pretty quickly say, okay, what am I dealing with and then figure out how do you continue with what you were already doing and how does it fit in.

So I want to dig into that a little bit more, and I’d like to start with you, Michelle. And tell me if I’m wrong, but my understanding is that when you were first diagnosed you were really in a pretty high‑level executive position in PR and communications, and how did you cope with the diagnosis in the middle of a very busy professional life?

Michele Nadeem-Baker:
It was not easy, and that part still isn’t easy. I’ve been trying to still come to terms years later with that. I was at a height of my career in a dream job, and I knew that I could no longer stay in that job because it meant staying in Florida, and I needed to move back home where my family was and my husband was. We had a long‑distance marriage because of career. It made me realize what’s really important in life, and that’s to be with family, but I was able to then continue using parts of my career in other ways and to help, as Andrew did. You’re doing very similar things yet now you’re doing it to help patients, and that’s what I’ve been trying to do. You’re a great mentor, Andrew. And so it, yes, it was very difficult when it comes in terms of that and as well as income and being used to being a high income earner and then not having that.

Esther Schorr:
So can you share how you made that transition? It sounds like you moved closer to family.

Michele Nadeem-Baker:
I did.

Esther Schorr:
And career‑wise what helped you make that transition?

Michele Nadeem-Baker:
I had to give up my job and my career. And I was well known in Florida, and I moved back up to Boston. I needed to remake connections from when I lived and worked here. And I’ve been consulting ever since versus within a company and a full‑time job. So trying to use what I do best, just communicate and go and help others. And what’s been happening is I found that it’s been mostly in life sciences and related fields.

Esther Schorr:
Okay. Thank you. You know, you mentioned Andrew. Andrew, did you want to speak a little bit about that transition that you had to make because we were at the time sort of building‑‑well, sort of. We were building a business and a family at the same time.

Can you share a little bit about what it took for you to make the change that you did?

Andrew Schorr:
Sure. Well, I think‑‑we were fortunate. We were already working in health communications. Michelle has sort of made that transition, and Jeff too actually is spending a lot of time doing that. So you kind of‑‑for us, you know, Esther, you and I think accelerated in what we were doing. I think for Jeff and Michelle they’ve sort of joined in where you can leverage what you’re learning as a patient to help others, and that’s very satisfying. And fortunately now with the internet we can to some degree do it on our schedule.

So sometime we’re tired. Sometime we’re distracted‑‑not distracted, that’s not fair, but we have doctor visits. We have bone marrow biopsies. We have other things. I get IVIG, monthly infusions. So how do you juggle all that?

And I think we learned to do that. At least that’s what I’ve done, and I think it’s been satisfying that we can communicate with others, and it’s part of who we are. Never wanted the diagnosis of CLL, no, no, no, but if you have it how can you go forward and do that? And I know both Jeffs are involved in helping other patients as Michelle is too, so that’s part of it.

Esther Schorr:
Thank you. So, Jeffs, any additional comments or points you want to make about this?

Jeff Brochstein:
As someone who is probably I think out of everybody here who is maybe less in a patient advocacy role, I mean, I’ve done it a few times, I’m always open to who, you know, Andrew sends me in terms of young people who are diagnosed who want to speak to someone with whom they can share experiences with, you know. I’m an IT projects manager. It’s not necessarily boiler room type work but it’s still, it’s pretty fast paced.

It’s pretty intense at the times. One thing that I’ve really experienced in terms of just first firsthand trying to deal with having CLL and making all the appointments, the bone marrow biopsies, the routine blood work, you know, I tend to‑‑I don’t openly communicate my condition to everyone at work, but I’ve been lucky and I’ve been blessed to have pretty decent managers who I directly reported to ever since diagnosis, and they’ve been just very accommodating and understanding. And in some regard they have to be, but I’ve been lucky enough to find that in the workplace, and that’s been really, really great.

Esther Schorr:
Okay. And actually that’s a great segue because the next thing I was going to ask about was how each you have handled communication with family and friends about the diagnosis. That’s a very personal thing. There are some people who are way out there and, gee, we don’t know anybody like that, but it’s a really personal thing. So maybe Jeff, Jeff Folloder, how did you handle that initially, and has that changed over time?

Jeff Folloder:
Well, I never hid my cancer diagnosis from anyone. I believe in the very first Patient Power event that I did I talked about the mistake that I made with my cancer diagnosis. I told my family. I told my wife. I told my daughters. I told my friends. But I kind of sort of forgot to tell my daughters that my CLL wasn’t considered hereditary, and my daughters kind of sort of flipped out for a significant period of time until I learned, wow, I should probably let them know what exactly is going on so that they can stop worrying a little bit.

And I did. And so now I make sure that people understand what it is that I think they need to hear. I don’t tell everyone the gory details of my CLL experience. Some people I tell, yes, I’ve got cancer. I’m a survivor, or I’m in remission, or I’ve relapsed. And the people I care about, I make sure they understand what’s really going on and how it affects me.

And at this point some almost nine years after diagnosis, and I know this is going to sound very counterintuitive, cancer gave me an awful lot of opportunity. I would have not had the ability to pull the hand break up on my life and reprioritize everything without a cancer diagnosis. I was moving too fast. Concentrating on the wrong things. Spending my energy on the wrong things. Now I focus on the right things.

And as Andrew is fond of saying, I’ve learned how to live well, and that’s because I’ve learned from everyone involved with Patient Power.

Esther Schorr:
Wow. Well, thank you. Michelle, Jeff B, Andrew, other commentary about how you communicated or chose not to communicate?

Michele Nadeem-Baker:
I did the opposite. Because‑‑probably because my career included crisis communications I was afraid if once I let out the info it would be career suicide, which is a very sad thought when you think of society. But instead now I’m trying to change that, that thought has that’s out there, that you still can be viable when you have a cancer diagnosis, which everyone here is proof of. But I was very afraid of that, that that would ruin my career.

As a matter of fact, I did not come, you know, out until I started in the infusion room and reported for Patient Power from it each time.

I was in infusion with the FCR part of my trial. So it dawned on me that in the past I had worked with the American Cancer Society and convinced people to come out about their cancer and explain to other patients. And I felt somewhat like a hypocrite that I did not, and I realized it was time. It was really time to do that. And it wasn’t only about me. It was about others as well. And that really helped empower me a lot.

And also as Jeff has said and I was saying before, it really does help you prioritize what is right, the right things to be spending your time on because I was on the hamster wheel of career and never sleeping, and this forced me, I had to. And as you said, naps aren’t a bad thing. I had to learn that, too. So it does help in certain ways, although it’s not a great way to have to learn the lesson. It is what we have, so you have to make lemonade out of lemon s, and I think that’s what all of us here have been doing.

Esther Schorr:
Thank you. And Jeff B?

Jeff Brochstein:
When I was first diagnosed, there were a handful of people, friends and family, who I told. And I can honestly say and somewhat brutally say this, there were some people that swept it under the rug because it’s a chronic condition. I didn’t need treatment right away. Many of them didn’t understand that, it being cancer, because they’re used to acute cancers, tumor‑based cancers that you have to attack immediately.

You know, I had other people who kind of buried me already because I told them cancer, and they stopped reaching out to me. And even up until today I still get a rare text message from some of these folks asking me, not in these words, but they pretty much ask me if I’m still alive. And I’ve kind of put them out of my life.

And there were some who were understanding, who actually read up on the things that I had sent them about CLL and how it’s chronic and how there’s all these emerging therapies on it.

So really for about a couple years after that, to kind of going to what Michelle was saying I was kind of in the closet about it. And then when my lymph nodes in my neck became a little more apparent and I really couldn’t explain it away all that easy, I came out a little bit more about it. And, you know, like I said, there have been people who have been very understanding. There have been people who have told me, well, it’s chronic and you’re taking a pill for it now so it can’t be that bad. And there’s been other people who have been like, oh, my god, cancer, you’re still alive. And, you know.

Esther Schorr:
I’m going to go a little bit out on a limb, Jeff. If I understood correctly you were diagnosed‑‑weren’t you diagnosed when you were still dating your wife? Is that?

Jeff Brochstein:
Her and I had just gotten engaged. We got married last year. She’s actually expecting, by the way, late February.

Jeff Folloder:
Congratulations.

Esther Schorr:
Congratulations.

Jeff Brochstein:
We’re having a boy.

Esther Schorr:
Oh, that’s so exciting.

Jeff Brochstein:
Thank you.

Esther Schorr:
And I bring that up because the other question I kind of wanted to explore with all of you is how did your diagnosis, if you’re willing to share, impact your relationship with your significant other or your spouse, you know, the person that’s closest to you? Was that different than dealing with other people? Anybody want to…

Jeff Brochstein:
I can start that off. You guys met Olga at ASH last year. If anything it’s solidified us. She’s a fire brand about it. She’s my rock. I really couldn’t make it through this without her. She’s been vital in terms of just my survival and us just having a happy life together. And we’ve been challenged by a lot of things. This is probably one of the biggest challenges, and it’s just made us better. So even under those circumstances, so.

Andrew Schorr:
Esther, I think I should jump in.

Esther Schorr:
Go ahead.

Andrew Schorr:
And you can tell us. So, you know, I was sort of more clinical. What do I have? What do we do, etc.? And as I said earlier, I thought my life was over, was relieved to find out it wasn’t. But all this was coming down on you too, and I don’t know to what extent you really shared how you were feeling because it definitely affects. We were‑‑you were a young woman. Esther’s seven years younger than I am, so you were younger. We had the idea‑‑we had two little kids, and we had the dream of having a third, so you might share what you were thinking.

Esther Schorr:
Sure. There was never‑‑I think the hardest person to share your diagnosis with was you, and my feelings about your diagnosis, the hardest one was to share that with you. And what was most helpful to me because I had loads of fears was to share it with other people who loved you as much, loved you in their own way as much as I loved you as my spouse.

So, you know, I think if anything it just solidified my dedication to our relationship and to figuring out the best way to support you emotionally and physically and professionally. So, yeah, you know, all of you have been talking about sort of there’s this weird silver lining of having a diagnosis of something. The silver lining is you look at what you’re really grateful for. And that’s really what it did for me as a care partner to you, Andrew. To say, okay, this ain’t good, but what’s the good stuff that we can do if we work together, and that’s really what’s happened.

Andrew Schorr:
We should mention that we began couples therapy.

Esther Schorr:
That’s right. We did, and that was very, very helpful so that I was able to communicate with you openly and you weren’t afraid to tell me when you had feelings, whether they were of fear or trepidation or not knowing how I was going to react. It took a long time for us to figure that out. I think we have.

Jeff Folloder:
One of the interesting things that happened in my particular journey, I got the diagnosis and of course everyone’s freaking out in the house. My wife is freaking out in the house, and she was being somewhat stoic about it and really didn’t know quite how to deal with things.

When the first doctor that I had seen that had given me the diagnosis described the treatment plan he wanted to do, I did a typical type A personality thing and said stop, went and talked with Dr. Google for an awful long time and decided that I needed a second opinion right then and there. And one of the watershed moments of my treatment journey was when we were sitting in that clinic room at MD Anderson when my doctor, not me, but to my wife walked over, picked her up out of the chair and gave her a bear hug to let her know that she’s a part of this process as well. It’s not just about me. And that was sort of a little bit of a release from the pressure valve because this is very much a team journey. I can’t even begin to imagine someone with CLL going through it by themselves, so I am extremely grateful to my beautiful bride of 31 years, and I could not have gotten to this day without her, period.

Esther Schorr:
Thank you. Michelle, did you have something you wanted to add on this?

Michele Nadeem-Baker:
Yes. A few things in that we waited until recently for couples therapy. I would suggest that it be started sooner, as you and Andrew did, because it would have been very, very helpful.

In the beginning I tried to protect my husband from things, and as I was living in Florida and he was in Massachusetts I considered not even telling him. In the first 24 hours, you know, your mind does crazy things. He was not with me because I didn’t even know there was anything wrong with me when I was told, and I even considered for him ending the marriage because it wasn’t fair to him. This all went through‑‑crazy things go through your mind. So I didn’t think it was fair to him, and his first wife had cancer. So the mind goes to crazy places.

Thankfully I did not. I shared, and he has been‑‑he has been by my side every step of the way probably much to his own physical health detriment, which is on track now. But he sacrificed a lot. He has been with me for every appointment. Every treatment he was by my side, every bone marrow biopsy. And thanks to him they redid some of mi tests which showed my genetic markers which they were not aware of as to how serious my CLL was.

He had read about that things could mutate or that tests only test a certain percentage of your blood and that perhaps it was different, and my symptoms were becoming more apparent that I was getting closer to treatment even though other things, other numbers did not show that through my FISH tests, my flow cytometry test. So he pushed them to redo the tests, and lo and behold, I was 11q, and they didn’t realize that. And IGHV they had known unmutated, but they didn’t realize the 11q. So I do suggest that people if they start seeing certain symptoms they do push for certain things, but my husband did that. I didn’t. I would not have pushed for that myself, so thank goodness I had a partner along the way, and I don’t think I could have done everything I did to be here today.

Esther Schorr:
If I’m reading all of you correctly, the relationship with someone else, a care partner, a caregiver, was additive for you.

Jeff Folloder:
Absolutely.

Jeff Brochstein:
Absolutely.

Esther Schorr:
And open communication.

Michele Nadeem-Baker:
Absolutely.

Esther Schorr:
Yeah. Because I know that we, Andrew and I, have spoken with patients where they really were reticent to share with the people closest to them for fear of scaring them, scaring them away, not knowing how they were going to react, so that’s a really important point.

The other thing I wanted to ask you all about was a few of you referenced having a wonderful medical team and finding a specialist and educating yourself. So finding the right doctor, educating yourself about the disease, what did that do for you? I mean, did it help you with just the emotional part of it? Did it help you feel more in control? Why was that a good thing?

Andrew Schorr:
Could I start, Esther?

Esther Schorr:
Yes.

Andrew Schorr:
So, first of all, Jeff Folloder mentioned about the doctor giving a hug and maybe it was probably Dr. Keating, but other doctors, Dr. Kipps down in San Diego gives hugs too.

I was‑‑put my hand out, and he said, no, I want to give you a hug, and he’s done that with you too, as Dr. Keating has. What it did by getting the right doctor is I think gave me, and I think you too, confidence. And this ties in to Jeff Brochstein as well. Confidence to go on with your life and at that age, earlier age, said go ahead and father a child, which is a big deal, right? That’s not just a short‑term thing. And I’d be interested in what Jeff Brochstein says, but I know you and I, Dr. Keating gave a hug and said, go have your baby, which here we were in a major cancer center. Go have your baby.

Esther Schorr:
And he’s 21 now.

Andrew Schorr:
Yeah, he’s 21 and he drives us crazy and we love him, but he’s our thirties, he’s our miracle baby. And, Jeff, you and Olga having the confidence to do that.

Jeff Brochstein:
Well, Andrew, a couple, I mean, we’d been trying for a while, and a couple of years ago a doctor told Olga and I that we had a better, almost a better shot of hitting the Powerball than we did of conceiving, and it kind of happened on its own a few months ago.

Esther Schorr:
That’s great.

Jeff Brochstein:
So it’s really a miracle. You know, I think what really found a comfortable place for me is I found a community oncologist who did have a specialty in hematology though he wasn’t a research specialist who has a great bedside manner, and he was also very cool with me going to MD Anderson and talking to Dr. Thompson and talking to a research specialist, and that gave me a good counterbalance. That gave me that second opinion. I could weigh that with what Dr. Stephen Szabo here at Emory was recommending, and I came up with what was best for me.

And Olga‑‑and us getting pregnant was just all the more of a present on top of that, so life is good in that regard.

Esther Schorr:
Any other comments on that? Jeff?

Jeff Folloder:
I’d like to chime in just a little bit. Andrew had mentioned Dr. Keating and his bear hugs and all that wonderful you stuff. One of our very first appointments with Dr. Keating, I felt the need, as many new patients do, to sort of like unload the guilt, all the things that I was doing that may or may not be exactly healthy, so it was sort of like a confessional.

And I can remember telling Dr. Keating, okay, you need to know that I smoke an occasional cigar, maybe an occasional briar pipe. And he asked me, well, how often do you smoke, and I said, ah, three or four times a month. And he said, okay. And I didn’t quite understand what okay meant. And then I kind of confessed, okay, you need to understand that most evenings I have a whiskey or two.

And he asked me what type of whiskey I drank, and he complimented me on my taste. And he actually stopped me and said, I am here to help you live a good life, not make you miserable. That’s where we were focused on. My first doctor just wanted to start treatment. Dr. Keating wanted me to live well, so instead of just getting a, quote/unquote, gold standard of treatment, Dr. Keating was focused on getting me the best treatment. So that was sort of my start to living well.

Esther Schorr:
Yeah. That’s how we felt about finding the right team for you, Andrew, was that. It’s what’s the quality of life and what are your priorities in your life and will your medical team‑‑is that what they’re focused on.

Andrew Schorr:
Right. You know, I make one comment about that, Esther, and I want to hear what Michelle says too.

So we’re blessed now with a range of‑‑a whole array of treatments, Jeff, you recently, Jeff Folloder led a town meeting in Jeff Brochstein’s home town recently where you spoke about that, that there are more treatments either approved or in research than ever before. So part of it is what’s your situation, and Michelle talked about unmutated and 11q, what treatment lines up with that clinically, but also what are your goals? Somebody who has FCR might be able to stop treatment after six months if it’s right for them and if it works for them. Some people may‑‑there’s some idea with Venclexta combined with Gazyva, maybe you’ll be able to stop after two years. With ibrutinib you’re taking it long term.

So what’s right for you? And I think all of us need to take a look at our lives, have a conversation with a knowledgeable doctor and state our goals. What are our personal goals for what works for us. Michelle, I mean, you may have things you want to add too.

Michele Nadeem-Baker:
Certainly. So when I went on the clinical trial I’m on, which some people know as IFCR, ibrutinib and FCR, I did not know at the time nor do I think they knew long‑term what would happen, but here it is. I can’t believe it. It’s three years this month I’ve been on it. I’ve been on ibrutinib for three years now, and I will be indefinitely until either it stops working or something better comes along, and I am able to live life. I am looking of course, as we all are, for a cure someday, and I’m still not MRD negative. That would be wonderful. That would be great. But right now I’m holding steady, and that’s a good thing. So my goal is to be able to live life as healthy as I can, and that’s what this is doing right now.

Esther Schorr:
Great. Well, so, I’m going to switch gears a little bit, and I want to ask you all a question. Have any of you dealt with a situation where you tell somebody what’s going on for you and they say, well, you don’t look sick. What do you say? What do you do when somebody says that to you?

Jeff Folloder:
A lot of smiling and nodding. It is a very common response. I think the two most common responses that we as CLL patients hear is, one, you don’t look sick, or two, oh, you’ve got the good cancer. Neither of these are acceptable. Yeah, I look good because I work at it. The whole concept of you don’t look sick, well, there’s a difference between looking sick and feeling sick, and as a CLL patient I take as much charge of my physical well‑being as possible. Before I was diagnosed with cancer I was a couch potato. I never exercised.

I didn’t need to. I was pretty lethargic and sedentary. Now I’m an avid power walker knocking out between 30 and 35 miles every week. I do it pretty fast, too. I’m trying to maintain my weight, and I’m trying to maintain my energy level. So, no, I don’t look sick. Sometimes I feel sick. I just did a week and a half on the road. I missed a bunch of naps. I’m a little tired. Actually, I’m a lot tired, and I’m looking forward to a nap this afternoon. And I’m going to take one, and it’s okay.

But this is part of my new normal. My new normal is the way I feel doesn’t necessarily show. And my wife understands that. My family understands that. The people close to me understand that. My doctors understand that. So if people don’t get it, that’s their problem, not mine.

Esther Schorr:
Any other commentary on that? I think that’s a great, very positive way of looking at it.

Michele Nadeem-Baker:
I have to say that I’m trying to look at the positives about people saying you don’t look like you have cancer. In other words, I feel like they’re trying to convince me I don’t have it because I don’t look it, but I guess I’d rather not look it than look it. That’s what I keep trying to tell myself. And as Jeff just said, I do smile a lot, it’s like, oh, yeah, you really don’t know what you’re talking about, but thank you. I know you mean it to be good and be nice. I also know people don’t know what to say. So I try to put the little sarcastic bubble aside and just try to think of that.

But as Jeff said you do have to‑‑you have to take charge. And I continue to, as Jeff was saying, I continue to work out in the way I do throughout even infusion. Continue to go to the gym and use weights and do cardio. And when the weather’s good enough up here, which it’s now turning to not be, do whatever I can outside as well as in the gym because you feel better.

And that is one way I felt I could take control when everything else was out of control health‑wise. So it also helped me in that way, in that respect as well as to be healthier physically. So it’s very important, I’d say.

Esther Schorr:
And really what you guys are all talking about is how do you stay empowered and positive. And for you, Jeff, it’s everything from power walking to taking naps, and for you, Michelle, it’s going to the gym and being an advocate. And Jeff, Jeff other Jeff, you’ve talked about some of the things that you do. And you’re going to be a lot busier with a baby in the house.

Jeff Brochstein:
That’s right.

Esther Schorr:
Anything else that helps you to stay positive in all of this?

Jeff Brochstein:
You know, I was always active for I don’t know 20 years before I was diagnosed. I’ve always lifted weights, done Cross Fit in recent years. So I spoke about this earlier, and this really kind of repeats some of the stuff that Michelle and Jeff were saying.

I’ve never appeared sick. I’ve always been physically fit. There was a time for about two years since I was diagnosed that I had some lymph nodes that went away once I started the ibrutinib. People never associated me with some sort of chronic or acute illness. And when I’ve told them what I have and I’ve told them about the condition, you know, I’ve also followed up with just trying to create awareness around this, send them some links, sending them some videos. Maybe sending them the original video I did at ASH last year, just to really create awareness around it. And it’s really up to them if they want to absorb it, on Jeff’s point.

Esther Schorr:
So, you know, I think to kind of wrap up all the things we’ve talked about, what advice do each of you have that might help someone who is facing a diagnosis of CLL in midlife? What lessons have you learned along the way that helped you face it?

You know, just kind of giving somebody advice, what would that advice be? And maybe, Andrew, do you want to start?

Andrew Schorr:
Yeah. I will say first given what we know about CLL and the range of things going on how, your life is not over. I thought my life was over. Here we are. I was diagnosed in 1996, or 22 years. I mean, I had no idea that I’d make it 22 months, right? And if you read some of the old articles and stuff you’d say, oh, life expectancy is not very long. So first of all, you’re going to live a long life and thank god for the medical research and the array of things that are available.

And I think Michelle said it too, right now, she’s been in a trial, she continues to take the ibrutinib, maybe there’ll be something else that she’ll need at some time and we’re confident that there will be. So, Esther, you remember that there was a guiding light, a patient advocate in CLL years ago when I was diagnosed, and she gave us two words as advice.

Chill out. And so that’s what I’d say. I’d say chill out. I don’t mean to be harsh. There’s a lot of grieving that goes with a diagnosis. I’ve probably said it to my friend Jeff Brochstein when we met in Atlanta last year, to you and Olga, but I would say that, and that’s based on evidence. That I’m living longer and people living a long time. And we get an eye into the research going on, and there’s a lot. So I think‑‑it’s not perfect. There are side effects, there are expenses, and there are course corrections in your head as well as in your life, but you’re going to live a long time. Believe me.

Esther Schorr:
Nice. Jeff B, any advice you would give to someone?

Jeff Brochstein:
Really along the same lines that Andrew just spoke and what Jeff had mentioned when he gave his intro. When you get CLL, when you get a diagnosis of this kind, god forbid, but when it happens during these years just take the what‑ifs out of your life. Take the projection out of your life because that will just make you grow worrisome and grow older and grow grayer. You really have to‑‑just to take things by the day. Just do your best early on to do as much research as you can about it. Try to see a specialist early on. I think that would helped me out my first couple of years if I would have gone to see a specialist as well as have somebody local and community‑based where I lived.

Reach out to people like Andrew, to groups like Patient Power. It’s a different world now than it was 10 years ago in terms of technology and information that’s out there. And I think most of all just keep tabs on the treatment landscape that’s changing every month it seems like or every six months something is approved, something new, something better, something not chemo related. Really, just pay attention to those things and you’ll be okay.

Esther Schorr:
Thank you. Jeff?

Jeff Folloder:
I would tell everyone that is recently diagnosed with CLL to do a couple of things. First, take a deep breath. I guess during pregnancy they would call that the cleansing breath, but you’re going to need to do a couple of them. So remember, that, Jeff, cleansing breaths.

Second, everyone has said it again and again and again. See a CLL specialist. You don’t have to see the specialist regularly, but you need to get a CLL specialist as part of your team. The landscape of medicine is changing not just monthly. It’s changing weekly, daily and hourly. One of the things my doctors keep on telling me the longer we wait the more likely we come up with something even better to treat you with. When I was first diagnosed we never heard the word “cure.” Now we’re hearing the word “cure” for some forms of CLL, and it’s getting better for lots of people very, very fast.

Make a few goals. I want to do this. I want to do that. Esther, you guys just saw Bruno Mars. Well, you saw him in a coffee shop. I’m going to go see him in concert this weekend. Why not? This is not a death sentence. This is just a part of my life. So I’m going to go do the things that I want to do, and that’s what I tell every single patient. At several of our town meetings I have made the point to remind people that statistics only look backwards. When you start looking at Dr. Google you’re going to see that the average life expectancy of a CLL patient is about six years. Well, that’s only looking backwards. I’m now nine years into it, so some people would say that I’m past my expiration date. I don’t look at that way. I’m living a great life. Every minute that I’m kicking, I’m kicking it for real.

Esther Schorr:
Thank you, Jeff. And, Michelle, any parting advice in this discussion?

Michele Nadeem-Baker:
That’s a tough act to follow.

Michele Nadeem-Baker:
So I would say the number one thing is to educate yourself and not just with as Jeff calls it, Dr. Google. Because if so you will get frightened by what it says because it does look backwards. But I would say to educate yourself as much as you can through credible sources, through current information versus past. Otherwise, you’ll get really frightened.

And the other thing is for those of you watching this, Patient Power generally has the leading doctors around the world for CLL on it. If you can get to one of those doctors that you see or one of the institutes, then that is a great source to go to to find out what is best for you to match you up.

If you do need treatment yet or not, projected time to treatment. And then if you can either go to whichever doctor that is, or in conjunction to what Jeff of Atlanta as opposed to Jeff of Texas is doing, pair that with your community doctor if at all possible so that you don’t have to travel. But that way you can be confident that you’re getting either in a clinical trial tomorrow’s treatment today or the best in treatment there is today. And there are so many out there.

The other advice I’d give, and someone gave this to me in my first week of diagnosis. Stay as healthy as you can today because there will be something to treat you tomorrow. And we’re all proof of that, all of us here right now.

Jeff Folloder:
Excellent advice.

Esther Schorr:
Yeah. Those are all such great advice, and you all are a delight and an inspiration to talk to. I feel very honored to be sort of in the middle of this circle of empowerment.

I want to thank all of you, Michelle, the two Jeffs and Andrew, for sharing your personal experiences as positive and very empowered CLL patients. It’s always inspiring to talk with each of you, and you provided some great perspectives and suggestions. And I want to thank our CLL community for joining us today and I hope that this conversation has been helpful to you. I’m Esther Schorr. Thanks again.

Cancer Goes Beyond Your Cells and Into Yourself

Your dreams of starting a family, of buying a house, of having grandchildren or of retirement in Florida may all come to a halt when your doctor says, “I’m sorry, but the test results revealed that you have cancer.”

In that brief moment, the future that you’ve dreamed up for yourself suddenly seems less attainable. Even though medical advancements have greatly improved chances of remission and the possibility of a long, healthy life, that doesn’t mean that a cancer diagnosis won’t drastically change your life. The first side effects of a cancer diagnosis that people may think about are the physical ones like hair loss, nausea and fatigue. However, some of the biggest challenges a cancer patient may experience are mental challenges.

While no one is going to respond the same way to difficult news like a cancer diagnosis, a number of cancer patients may experience several common mental health disorders. According to The National Cancer Institute, approximately 25 percent of cancer survivors experience symptoms of depression and about 45 percent experience anxiety. Some patients may even exhibit symptoms that meet the criteria of post-traumatic stress disorder (PTSD). The most concerning statistic is that cancer survivors are twice as likely to commit suicide than the general population.

The physical pain, treatments and stressors involved with a diagnosis is enough to cause a mental health disorder to develop on its own, but a person still has to deal with everyday stresses relative to relationships, finances and family issues. Some tips to boost your mental well-being during such a trying time can include:

  • Eat a well-balanced diet. Make sure you are eating enough calories because that’s will maintain your energy level. Lean proteins and colorful fruits and vegetables are nutritious choices that can help boost your strength and attitude.
  • Go outside. Going outdoors and getting fresh air can help clear your mind of negative thoughts associated with your illness.
  • Make memories. You shouldn’t let your cancer diagnosis keep you from living your life and enjoying your relationships.
  • Talk about it. Talking about your feelings can often make you feel better, it can be especially beneficial to talk to other cancer patients so you have someone to relate to and possibly offer a new perspective.
  • Grieve losses. As your illness and treatment progresses, you may face a number of obstacles like losing your independence or your ability to maintain your routine and complete simple tasks like grocery shopping or doing laundry. You should take time to grieve these personal losses before you try to move on.
  • Take your medications and supplements as directed. With your illness you may often experience chronic pain, it’s important to take your pain medication as directed so you don’t increase the risk of developing a substance use disorder. You should also discuss any changes you want to make regarding medications or supplements with your care team.
  • Get financial counseling. By discussing your extra expenses with an experienced financial counselor you can alleviate some of your anxiety.
  • Maintain an active social life. It’s important to have a strong support network because it helps you get through treatment physically and mentally.

Cancer can take a toll on your body but it can also be hard on your mind as well. If you or someone you know is struggling with a mental health or substance use disorder, recovery is possible. Call and speak with a representative at The Recovery Village to find out more about treatment options. The call is free, confidential, and there is no obligation to enroll.

Patient Cafe® CLL – June 2018

Taking Back Control: How I Became An Empowered Patient

Patient Cafe® CLL – June 2018 from Patient Empowerment Network on Vimeo.

CLL patient and host, Carol Preston, leads a panel of 5 other CLL patients from around the country to discuss treatment options and living well with their disease.


Transcript:

Carol Preston:
Hello everyone, and welcome back to my favorite coffee shop, the Patient Cafe. This is our virtual coffee clatch to share information, not just from me but from many other patients who have been living with CLL, chronic lymphocytic leukemia, and they’re going to help their insights to support and to guide us for treatment options and living life well.

Again, I’m Carol Preston. I’ve been a CLL patient for 12 years, one relapse, in remission now since 2010, but, unexpectedly, I developed a second cancer, and I’m not alone in this because some of our coffee clatchers will share their experiences with second cancers as well, was diagnosed in December, a soft tissue sarcoma.

I have a quick update, very positive. My first set of post‑surgical and post‑radiation scans since I did the interview with Andrew Schorr‑‑by the way, it’s on the CLL website, Blindsided By a Second Cancer‑‑those scans were clean. Having said that I have seven more sets of scans to go over the next year and nine months, but fingers crossed that they will be clean as well.

I also want to share a wonderful piece of news since I did that interview, I became a grandmother for the first time. And I know on this panel I am not alone in joining that very, very happy club, but I get very excited about this little baby boy, so I wanted to share that good news with you. And really it just speaks to the importance of keeping one’s eyes on the prize. Because as I was going through a treatment for this second cancer I kept that little baby and its imminent birth in my head the entire time. So lots of good news on my end as well as from the panel from our coffee clatchers that you are about to meet.

Before I turn it over to them and introduce them I want to be sure that we thank the Patient Empowerment Network for its support. The program is produced by Patient Power. This program is not a substitute for medical help and guidance that you receive from your healthcare providers. This is really general information, that as I said at the beginning we hope and are confident will guide you to more informed treatment centers‑‑decisions, and become more empowered. And, in fact, that is what we are calling today’s coffee clatch, Becoming a More Empowered Patient.

We have a robust panel of people joining us around the table with their virtual coffee cups, Sue, Sherry, Catherine, Neal, and Dave, and I’m going to let each of them quickly introduce themselves, where they’re from, how long they’ve been living with CLL. And then from there we will carry on our conversation.

And, Sue, if we might start with you, then go to Sherry, Catherine, Neal and Dave.

Sue:
Absolutely. Good morning, everyone. My name is Sue Dudek. I live in Palm Desert, California. It’s going to be 118 today. Yeah. And, anyway, I was diagnosed with CLL. It’s been five and a half years. It was in January of 2013, diagnosed in a routine blood test. It became very aggressive. I went into treatment the following June, and I am now in remission, which is wonderful. Feeling great, and continue to do well, other than the fatigue.

Don’t know what else you want to know at this particular point. I would have to say that I was pleased to have found Dr. Kipps at UC San Diego, who is my physician, and I am 17p deleted, so that meant that I had to have some rather unique and different treatment approximate plans, but so far, so good.

Carol Preston:
And, Sue, I’m also 17p deleted, and to echo you, so far, so good. All right.

Well, let’s talk to Sherry. Good morning.

Sherry:
Good morning. I’m Sherry Gardener. I live in Fort Collins, Colorado. And I have known that I had CLL since 1999. I’ve probably actually had it since 1996. I’m fortunate to have one of the lower risk varieties. I have a 13q deletion, but I’ve had treatments off and on over the last how many years, 18 years or so. I’ve been in remission now for a little over two years. My last treatment was with idelalisib, and Rituxan.

I’m very fortunate that my hematologist is Dr. Clive Zent at the University of Rochester in New York, so I travel there three, four, sometimes more times a year because he’s a star and I figure we only have not that many chances to get it right.

Carol Preston:
Well said. Catherine?

Cathy:
My name is Cathy Shneck, and I live in the small town of Pine Grove, Pennsylvania. I was diagnosed in July of 1997, so next month will be 21 years for me. Probably what’s a little unique about me is I’m a registered nurse, so I went from being the caregiver to the patient, which is an adjustment for me. I have‑‑I’m on my fourth agent currently. I had FCR, and then I was tried on ibrutinib, which I failed because of bleeding issues. And then I did obinutuzumab, which had no effect.

So I’m currently in a Phase 1 clinical trial at Penn in Philadelphia, an oral agent, the next Btk inhibitor, and so far it’s been working. I am not in remission, but I’m controlled.

Carol Preston:
That’s good news and persistent. And hopeful news.

Cathy:
Yes.

Carol Preston:
Wonderful. All right. And then rounding out our clatch this morning, Neal, and then Dave.

Neal:
Good morning. My name is Neal Rosen. I live in San Mateo, California, which is on the peninsula south of San Francisco. And I was diagnosed just about three years ago, I think in about a week or so, so happy anniversary to me. I had a pretty quick onset of the disease, and so I started chemo within about a month of diagnosis, went through five or six rounds of FCR, and at this point am in remission.

Carol Preston:
That’s great news, and we’re going to hear more about your empowerment moments right after we hear from Dave and say hello to him.

Dave:
Hello. I’m Dave Weisler from Metamora, Michigan. I’m been‑‑I’m 11q. I’ve been in two clinical trials. The first one was with lenalidomide out in Buffalo, New York, and the second one was at Ohio State, and it was for three treatments. It had obinutuzumab, Revlimid‑‑excuse me, ibrutinib and then finally venetoclax, and I’m MRD negative.

Carol Preston:
Fantastic news. That’s the news that we’d like to hear. All right. Well, you’ve met our wonderful panel sitting around our virtual coffee table today, so now let’s get the conversation going. First of all, what I’ve picked up from these introductions, a couple of things. Number of you have been on several treatments, and the other thing that I picked up in terms of being empowered patients is that you wasted little or no time getting to major medical centers and not relying necessarily, necessarily on the first oncologist with whom you met.

That was my situation back in 2006. And, you know, I can say I probably wasted a little bit of time because I wasn’t a very knowledgeable or empowered patient, and sometimes we learn by trial and error. So what I’d like to do is to go around, and you can all pick up from each other. And, Dave, we’ll start with you this time about basically an ah‑ha moment to become empowered. You haven’t been suffering‑‑well, when were you first diagnosed? Tell me again.

Dave:
Eleven years ago.

Carol Preston:
Yeah, 11 years ago, so you’ve been on a few regimens. So tell us about how you became more knowledgeable and empowered.

Dave:
Well, if I had listened to my local oncologist I’d died about four years ago, and so back then he said all we have is a cocktail for you, they called it. And so I started looking into it, and I said, no, there’s got to be something better out there. And I found a website called CLL Forum, and I it had a lot of the people that were in the same boat I am looking for the new treatments.

And that’s where I found the one out in Buffalo, New York, and that lasted about three and a half years. And then, still reading, I found the one at Ohio State, which was the three‑drug treatment that I really, like I said, I was‑‑in seven months I was MRD negative, and at 14 months I was still MRD negative in the blood and the bone marrow. And I haven’t been on treatment for a year and a half.

Carol Preston:
That’s such fantastic news, and as you now know Ohio State is one of the premier medical centers for treatment for CLL.

Dave:
Oh, absolutely.

Carol Preston:
So your research got you to the right place in the Midwest. Neal, since becoming an empowered patient, I know you’ve only been living with this, long enough certainly, but for three years.

Neal:
Well, I was fortunate, if that’s the right word, to have a very good friend here who had been diagnosed about a year and a half or so before I was, and although he has not yet undergone treatments, he did a lot of due diligence. And so he was able to turn me on to sources of information including Patient Power.

And, you know, I have to say that before I was diagnosed I probably couldn’t have told you‑‑given you ten words about leukemia. I just didn’t really know much about it other than it was a blood cancer. And I think, you know, I was referred to my oncologist by my primary care physician, who I trust a great deal, and I did get a second opinion at Stanford. My primary care physician is with California Pacific Medical Center in San Francisco.

And, you know, I read as much as I can and keep on top of things as best I can, and I think, you know, you really have to as a patient you have to do that.

Carol Preston:
And, Cathy, did you have a similar experience are or‑‑you’ve had quite a road. You’ve had quite a path over these last 21 years.

Cathy:
Yes, it’s been a long time. Well, my diagnosis was by accident, or I shouldn’t say accident but I went in for a GYN procedure. They found it on my pre‑op blood work. And then I was referred to a local oncologist that I had a really bad experience with, which I won’t go into. I’m actually on my fifth oncologist now.

I was going to Penn State Hershey. In fact, I still go there. That’s my local oncologist, and he got to the point where he didn’t know what to do with me anymore. He was out of options, so he‑‑we have a very collaborative relationship because we were both medical professionals so he talks to me very respectfully and includes me in all my decisions, and he told me to do some research, look for a CLL specialist, which I did. I narrowed it down to two and then took those recommendations back to him and one of the ones that I had chosen was one that he wanted to recommend, so that’s how I ended up at Penn.

Carol Preston:
And Penn, you may know, is doing leading research on this CAR‑T cell therapy, which doesn’t involve meds at all‑‑

Cathy:
Right.

Carol Preston:
‑‑but reigniting our immune systems in certain ways. Still in experimental stages. So, obviously also plugging and plodding ahead to get the right treatment from the right center or facility.

Cathy:
Exactly.

Carol Preston:
And Sherry, how about you?

Sherry:
Well, I used to be an RN as well, Cathy, and I speak the language, and I think that that gave me a head start in becoming what we are calling a powerful patient. You know, you can recognize quality when you’ve been a nurse, and you can also recognize the opposite, and I had a few false starts.

And, finally, some of you will remember Chaya Venkat, who was so helpful to many of us in the early days of CLL with her online forum. She suggested, she met Dr. Zent up at the Mayo Clinic, and she said, you know, I think he’d be a really good fit for you. And so I started seeing Clive at the Mayo, and saw him there for 10 years. And now have been‑‑he moved over to the University of Rochester to be the director of the CLL treatment and research program there, so now I go to Rochester to see him.

Carol Preston:
From Denver. From Denver, right?

Sherry:
I fly from Denver, yeah. I’m spending all our children’s inheritance.

Carol Preston:
That’s all right. My supervisory doc was at MD Anderson. I live in Maryland, half way across the country, so I feel your inheritance pain there.

Sherry:
Our kids will have a few things left like maybe some dishes, I don’t know.

Carol Preston:
They would rather have you than any inheritance. Anyway, keep going. Sorry about that.

Sherry:
I’d rather have them too.

I can’t emphasize enough the importance of education, self-education. What I have found very helpful in learning about CLL are some of the Patient Power forums with the experts, the interviews with the experts. In fact, one of those led me to a physician in Denver who I will see locally if I need to for emergencies if I can’t get out to Rochester. Dr. John Burke, and he’s terrific too. So education is really important.

I think it’s also important to be aware of the sources of our education. There are some folks on some of the online forums who like to play doctor, and I think it’s‑‑it can be fairly easy to tell what’s good information and what you might just pass over.

I’ve also found exercise to be really important. I was diagnosed serendipitously the day before I was scheduled to do a triathlon in 1999, so I was in really good shape. But I had this little pain, you know, in my sternum the day before, and I thought, oh, I don’t really want to have a heart attack during this triathlon. That would be so embarrassing. And so I went to the emergency room, and it was found on a CBC.

The young cardiologist came into the room after some wait, and she looked about 12, and she said, you have CLL, but don’t worry about it. Oh.

Carol Preston:
Freak out, right?

Sherry:
Thanks for sharing. So I was in really good shape then, and I found that continuing exercise has been one of the best treatments both for anxiety and also for keeping this body in pretty good shape.

Carol Preston:
Yeah, I have to second that as far as‑‑and also getting‑‑mentally getting the endorphins flowing, keeping the energy level up. And I have a feeling that that’s not just you and me, Sherry, but some others on the panel as well.

Sue, could you share with us how you got‑‑how you got into this coffee clatch with this morning, this afternoon?

Sue:
Absolutely. When I was first diagnosed, again I mentioned it was just through routine blood work, and my family physician said, you know, you’re either really, really sick with an infection or you have leukemia. And he said, you look too healthy to be having a really bad infection.

So he referred me to a local oncologist, and they started monitoring me. And during this time I was really quite ill, and it was progressing very, very rapidly, the white blood counts, everything. And this was from February until the first of June, and I went to see the oncologist, and he said we need to start treatment right away. We’re going to put you on FCR.

And I for some reason decided, I said, would you please give me a couple of extra slides of my blood work. And he did. He said, yeah, I’d be happy to. What are you going to do with them? And I said I’m going to send them to a friend of mine who is a CLL research‑‑he’s a blood cancer researcher at the Huntsman Institute in Salt Lake City. And I sent them to him.

He immediately wrote back and said, do not start treatment. Get a second opinion. He said you are‑‑I don’t know if you can get in to see Dr. Kipps, but he’s the best one close to you. So I cancelled my appointment to start treatment. I called down to the UC San Diego in La Jolla. I said they want to start treatment, and they said, send us all of your paperwork. I sent a fax, and within 45 minutes after I sent the fax I got a call, and they said, the doctor wants to see you next week.

Carol Preston:
Wow.

Sue:
Yeah. He wants to see you next week. So off I went. It’s about a two hour lovely drive from Palm Desert to La Jolla, which is even prettier. And so I went down there and am seeing Dr. Kipps. He immediately started my treatment with apheresis. Because my spleen was so enlarged, he was very concerned about tumor lysis syndrome. So my first step was to go back down to the hospital and spend the day having the apheresis where take your blood.

Carol Preston:
Yeah, would you explain what that is for us?

Sue:
Well, it’s kind of‑‑they take all your blood out of one arm and put it back in the other, and it’s kind of like a dialysis except they put it into a centrifuge, and that spins out the white blood cells because they’re heavier, I believe heavier than the other blood cells, and they were accumulating in a bag‑‑although they’re not white, they’re pink. I will tell you that right now. And they were accumulating and it took‑‑it was about a six‑hour process, and they‑‑

Carol Preston:
So, Sue, if I may jump in.

Sue:
Yes.

Carol Preston:
So good news is that you did push for that second opinion‑‑

Sue:
Absolutely.

Carol Preston:
‑‑including slides to a researcher in Utah who directed you to again another premier center, UCSD. Dr. Kipps is famous, world famous for his research in to CLL. And that’s what I’m hearing from all of you.

One of the questions that I’d like to ask‑‑and anybody can jump in. I don’t want to feel as if we just keep going around the table, is this pushing through beyond the diagnosis. Because I know for example when I heard the word leukemia, you know, for me that was a death sentence, before I knew anything. It was totally out of the blue for me, totally unexpected, and like everyone else scared to death, frightened. And to actually‑‑went to the oncologist referred‑‑to whom I was referred, took that oncologist’s word that this was what I needed to do. Was not an informed patient, was not empowered by any stretch.

And so I’m wondering how all of you, and for those of us watching and listening, would like to know how do you push through that diagnosis? How do you tamp that initial fear and panic to get to the next step, which is to seek another opinion, which is to just take a breath and say, I can wait another week or two or three. I think all of you have something to contribute along those lines, please, just jump in and let’s hear about that.

Sue:
Well, if I would‑‑I could go. I’m one of those that I immediately got on the internet. I mean, literally from the first time I heard from my doctor I got on the internet. I started researching it. I called my mom, and I said, mom, does anybody in the family have leukemia. She couldn’t recall that, so I figured at that point it was probably not hereditary.

So I just really started digging in. Maybe that’s me. I was a researcher in my background, so I just started reading everything I possibly could about it.

Carol Preston:
Okay. So that’s one way. Of course, a lot of times people feel intimidated. There’s so much information on the internet, thousands and thousands of pages, so all of you seem to have waded through that.

Neal, what about your experience?

Neal:
Well, as I said earlier, I had the good fortunate, again if that’s it right word, of having a good friend who had been diagnosed, and so he was able to share some of his insight. I also had a friend who actually was one of the first patients treated with Gleevec for AML, and he’s very close to Dr. Druker, and so he was a good source of information.

And again, you know, I spent a fair amount of time doing the research on my own as well, so I had several different avenues, if you will, of ways to get more educated.

Carol Preston:
Getting on the internet and doing all of this research has been described sometimes as drinking from a fire hose with many of us feeling we need to absorb information. It’s the equivalent of getting an M.D. in the space of one, two or three weeks.

So, Dave, how did you push past that?

Dave:
Well, first of all, I didn’t‑‑I had trouble with my oncologist’s diagnosis that I had seven years and that was about it. Three trials of FCR I assume, and I just couldn’t, I couldn’t see myself there. And I’m a school teacher, so we’re used to researching. And I first went on and looked at all the different websites. Obviously, Patient Power was one of them I looked at and did some research. There’s a place also called PubMed. I don’t know if you’re familiar with it.

Carol Preston:
Yes.

Dave:
Okay. It’s all the research being done. So I went there and looked on what was going on, what were the trials, what were the results. I’m a statistician, so I could read the research, you know, and the probability. And that got me going. And then, like I already mentioned, that one place has a clinical trial place where I saw other people.

And I go, no, that clinical trials is where it was at. This was not just go find an oncologist with FCR. Like I said, he gave me seven years and I just couldn’t‑‑that was just not the right place for me. So I did a lot of research and found that the closest one, like I said, was in Buffalo, New York, for Revlimid.

Carol Preston:
So let me ask Sue first, and then Sherry. When we pause and we take the time to do the research, that to me is the biggest challenge because so many people just want to get the cancer out as fast as they can. And that was my approach. It was not a good approach, obviously, twelve years ago. If I had taken a little more time I might have had one treatment. Of course hindsight is 20/20.

So how do we take that pause? Where do we get the confidence to take that pause before we start jumping into treatment? Sherry?

Sherry:
Well, that’s a really good question, especially for me, it’s hard to answer because I’m‑‑I’m a pretty impatient person, but I’ve also spent a lot of my life in academia. I’m a clinical psychologist, and, like Dave, I am accustomed to doing research. So I too went to pubmed.gov and put in CLL and found the researchers who were doing the gold star work in CLL, and that’s how I chose the subsequent docs that I went to see.

I think we have to dig kind of deep into ourselves and think, am I going to believe what somebody else told me, I have seven years left to live? How would that doctor know you’re going to have seven years? He doesn’t know that. I think we‑‑it’s all about taking responsibility for ourselves and thinking, we’ll see about seven years. We’ll see about 10 years.

But it gets down to who we are inside and the kind of internal strengths I think that we were born with, what our life experiences have been. But we can‑‑if we’re a little timid ourselves we can listen to other people who have done this work and say, well, Dave didn’t want to hear seven years so look at what he did, and I’m going to be Dave for a while, and I’m going to do what he did.

Carol Preston:
And that’s why this Patient Cafe, this discussion that we’re having is so very important for people to muster up the courage, if you will, to take a breath.

Sherry, you had the advantage of being an RN and a clinical psychologist, but still we play a lot of head games with ourselves and mind games.

So, Sue, what’s your story? How did you gain the confidence to take a step back?

Sue:
Well, I have to go back to the friend at the Huntsman Institute who‑‑he accepted those slides and said, let me see what I can do. He sent some of them to Oregon. He said, I want to do some digging. This is what I do. And he sent me an e‑mail literally within about three days basically saying do not pass go.

Carol Preston:
Okay. So let me‑‑and let me, Cathy, we know you’re there. We want to hear how you were able to take a step back and figure it out. And you’re living in a relatively small town. Doesn’t mean you don’t have access to major cities, but Harrisburg isn’t that close to Penn, and you actually started out locally or more locally, did you not?

Cathy:
Right. I was referred to my local oncologist, and, like I said, I had a really bad experience with him. Number one, the day he told me what my diagnosis was he berated me for being upset. That was my start with him. So it all went downhill from there, and I started looking for another physician almost immediately because of some other should I said unprofessional‑type things that happened with him.

But I‑‑I was working in Pottstown at the time, which is about an hour outside of Philadelphia, and I was a nurse manager of a kidney dialysis unit, so I had my colleagues who were the managers of the cancer center, and I picked their brains. They gave me a lot of‑‑back then there wasn’t as much on the internet as there is now. It wasn’t quite what it is today, so I relied more on written materials.

And everything I read said that CLL was a diagnosis or a disease of older men, and I was 38 and a female. So I was like‑‑and everything I read said from diagnosis to death is like 10 to 12 years. And the physician I spoke to at the hospital that I was working at said, you have to realize that if you’re diagnosed when you’re 75 or 80 and they give you 10 to 12 years, you know, that could be just your normal life expectancy. So he said, you’re 38. He said, you can’t go by what that says.

So I took that and ran with it. You know, I said, okay. I’m only 38, so 10 to 12 years is not acceptable to me, so I got as much‑‑

Carol Preston:
Thank goodness.

Cathy:
I got as much information as I could. You know, I went through the medical library in the hospital and had the librarian there help me do some research, things like that, and found out as much as I could. And like Sherry said, I wanted to fix it, you know. Okay, you have this problem. Who do we do about it? Let’s fix it.

So watch and wait for me was a totally foreign concept. I want to fix this because that’s just what we do. And I knew nothing about leukemia. It wasn’t my field. I was a kidney specialist nurse, so I had a lot of where I just figured, you have leukemia, they give you a bone marrow transplant and away you go. So I had a lot to learn, and I’ve learned a lot over the last 21 years.

Carol Preston:
Well, you sure have. First of all, I want to tell you, you look great.

Cathy:
Thank you.

Carol Preston:
So all of your jagged path to get‑‑

Cathy:
Like Sherry said, exercise is important. I run five miles every morning, so, yeah. I did my first 5K about three years ago, and then right after that I found out I was stage IV and needed to do treatment again, so. I was feeling really great, but my numbers didn’t show that, so.

Carol Preston:
By the way, I was stage IV when I was diagnosed initially, not the 17p until the relapse. And you know, I said to myself, well, sort of thank goodness. Stage IV in CLL is not the same as stage IV in other types of inaudible tumor‑‑

Cathy:
Right.

Carol Preston:
Or solid tumor cancers for example.

But I’m wondering if‑‑we’ve talked a lot about the relationship that you have with your current healthcare teams, but I suspect that you have had discussions with other people who are newbies to all of this, and maybe you’ve had to calm them down. So how have you handled people coming to you and saying what should I do? Where should I go? How do I handle this? Shouldn’t I‑‑to your point, Cathy, can’t I just get this fixed? Get this cancer out of me as quickly as I can.

What’s been your experience with other people who have actually come to you for guidance?

Cathy:
Well, I have a friend that was just recently diagnosed, like I’d say maybe a year or two ago. And he goes to the physician that I went to initially, and I keep telling him he needs to get out of there, like you need to go somewhere else. But he just doesn’t want to go anywhere but local. It’s more important to him to be in close proximity than to get what I consider quality care.

Now, he’s not to the point where he needs treatment yet, but I’ve been trying to work with his wife to try to convince him. I think she just about has him convinced to at least‑‑to go down to Penn and get a second opinion.

Carol Preston:
And before I hear from others, it’s something that we want to emphasize for folks watching this. You can be treated locally. A good oncologist not only will work with but should encourage all of us to seek second opinions from the experts in the field, major medical centers, because these are the men and women who are on the cutting edge. And the treatment options from those major medical centers could be a year or two in advance of what the community oncologist or the local oncologist is prescribing. Some of you have experienced that firsthand.

So, again, we want to emphasize, at the very least, be comfortable working locally but get that second opinion from a topnotch expert in the field, and increasingly they are spread around the country. If you go to the CLL forum on ACOR, for example, A‑C‑O‑R, at the end of every discussion they have a list of CLL specialists. So there are lots of places to find CLL specialists at least to get that second opinion.

And then coordinate having that specialist work with your community oncologist. We don’t want to discourage people from working locally. We need or community oncologists. The good ones will coordinate, work with the experts at the major medical centers.

Who else can tell us about an experience with somebody who came to them in the not‑know?

Sue:
My sister‑in‑law was diagnosed with MPN, myeloproliferative neoplasm. I’ve learned how to say that. And she lives in the Phoenix area, and she did not want to go get a second opinion. She was under‑‑and I think a lot of people believe that you can’t, your insurance won’t pay for a second opinion. And I think that’s one of the other myths that we can dispel is that, yes, you can, I think with just about everyone, get a second opinion.

Carol Preston:
And, by the way, being in the Phoenix area, my goodness, you have a couple of great institutions there.

Sue:
Yes.

Carol Preston:
MD Anderson, naming one of them.

Sue:
Yes, and there’s a Mayo‑‑there’s also a Mayo there.

Carol Preston:
There’s a Mayo, so.

Sue:
Her insurance did not allow her to go to Mayo. But, anyway, I did finally convince her because she was not getting better, and her numbers were getting worse and worse and was not feeling well, and I just said please, please, go. And I called my doctor at UCSD, and I said who would you recommend anywhere in the southwest United States for somebody who has MPN, and he recommended, actually, a doctor there at UCSD.

Carol Preston:
All right. Good.

Sue:
And she is now in a clinical trial.

Carol Preston:
Excellent. Excellent. And hopefully‑‑

Sue:
She’s doing well.

Carol Preston:
Doing well, that’s wonderful.

Carol Preston:
Neal or Dave, I’d like to hear from you as to whether anyone has come to you and you were able to encourage, entice, hammer them with information to get a second opinion, to become more empowered.

Dave:
Yes. I was one of nine people trying to see if the three drugs would work and that there wouldn’t be toxicity on there, and obviously it did well for me. And then there was another second arm of 50 people, 25 that had never been treated and 25 had been relapsed.

And this CLL forum that I belonged to, I was‑‑I blogged everything that I did day by day by day. And I also gave out my phone number in what we call a personal message, and so I was getting a number of phone calls from people about the trial. And I would say out of the 50 people I’d say 25 I probably directly brought into it.

Carol Preston:
That’s fantastic.

Dave:
So, but I‑‑just real quickly. I had two gentlemen that helped me, gave out their phone number, and I would call them with just concerns or just being scared. And this was at the early stages of CLL, and they helped me. So, as I tell other people that I talk to, I say, just pay it forward to other people and help them.

Carol Preston:
What great advice that is. It’s so very important.

And I do want to make a plug for clinical trials. There’s a lot of misinformation, and for those of you in the medical field or medical research you know that it’s‑‑it’s tougher rather than easier to get people to join or sign up for clinical trials. But when it comes to cancer clinical trials it’s not a placebo against the drug that’s being tested. It’s the gold standard of care against the new treatment, so nobody should feel they go into a clinical trial and they’re not getting treatment. You have to qualify of course.

Clinicaltrials.gov, reaching out whether it’s ACOR, Patient Empowerment Network, all of the organizations that people are finding online, lots of ways to get involved with clinical trials. So I did want to make a plug for that.

Neal, how about you? Anything? People coming you, asking for help?

Neal:
Well, a couple things. So, as I had mentioned, I had a friend here who was diagnosed, but he’s been in watch and wait, and so I leapfrogged him, if you will, in terms of having to undergo treatment, so I’ve been able to share some of those experiences with him.

And also for about the past year or so I’ve been volunteering with LLS, and one of the things I do is reach out to people who have contacted the organization to talk with them about services and assistance. And certainly as part of those conversations you get involved in some of the personal experiences that‑‑personal experience piece that comes with that.

Carol Preston:
So much of this can really be a grassroots effort, each of us reaching out to a person or two. Sounds like all of us have had the opportunity to talk with somebody else on this unexpected and truthfully unwanted path of cancer, whether it’s a first cancer, whether it’s a second cancer. And hopefully we’ll all be able to do this.

As we wind down our time together in this wonderful coffee clatch, I’d like to go around and ask each of you to a tip. People tend to remember the first thing they hear and the last thing they hear, so perhaps a tip for somebody else. We can use this term becoming more empowered, but many people struggle to find a voice. They’re concerned about delaying.

So let’s start with, Neal, we just heard from you the last, let’s start with you first. If you had one tip to pass along to other patients what, would you say?

Neal:
I would‑‑and other people have touched on this. I would say don’t let the fatigue get you down and try to stay active as you can. Obviously, listen to your body and don’t push, but don’t let it turn you into an inactive person as well.

Carol Preston:
That’s a great tip. And, Dave, how about you?

Dave:
Just that people with CLL, it’s not the death sentence it used to be. There’s too many great drugs out there coming along, and I consider CLL just like diabetes. It’s something I do, I take. I put it in the back of my mind and go on. It‑‑the more you read the more knowledge is power, you’ll find that. It’s not the death sentence it used to be.

Carol Preston:
And we have to remember the first word is chronic.

Dave:
Yes.

Carol Preston:
And the goal is to live with it and die from something else.

Dave:
Correct.

Carol Preston:
Old age, the infirmities of old age, in our 80s, 90s, our 100s. I have a dear friend of my mother who lived life to the fullest till 108, so that’s my goal. I’m shooting for that.

Sherry, how about you? What’s a tip that you can pass along?

Sherry:
Well, I plan for 107 myself, Carol.

Carol Preston:
Yea, okay. You don’t want to live too long there.

Sherry:
You know, I think about the infrastructure structure of ourselves. If we can strengthen who we are as people then we will do better with CLL. And by that I mean eat well, exercise, hang out with good people in your life. Take bolt cutters to any relationships that aren’t good for you. Pay attention to the spiritual component of your life, however that may manifest itself. And have fun. If we do these kinds of things, then the infrastructure will be strong and we can cope with all the vagaries of CLL better.

Carol Preston:
Well, we’re wishing for you, obviously, many more triathlons. And I love that term bolt cutters to people who are not positive.

I just want to add we can’t expect people to understand exactly what we’re going through, but hopefully the people we do hang out with can say things like, listen, I can’t imagine what you’re going through but I can drive you. I can fix a meal for you. I can take a walk with you. I can go to the gym with you. We can go to a movie together. Boy, those are all the things that have helped me in my life and I suspect all of yours as well.

So let’s round this out with Sue and Cathy with your tips for the day. Sue?

Sue:
Well, I’d have to say two things. One is you must be your own advocate. Absolutely. And probably the other thing is get a second opinion.

Carol Preston:
Absolutely.

Sue:
That’s what I tell everybody.

Carol Preston:
Okay. Cathy, you get the last word here.

Cathy:
It’s like Dave said, knowledge is power so you need to be educated. And the other thing I would say is if it doesn’t sound right, if it doesn’t feel right, don’t be afraid to question it. Nobody has all the answers, and just because they have an M.D. or a D.O. behind their name doesn’t make them all powerful, so don’t be afraid to ask questions and to get the answers that you need.

Carol Preston:
That is a fantastic last tip from our Patient Cafe, nobody has all the answers. And please, please, please according to, definitely what Sue said is at least get a second opinion because a good oncologist locally will work with a major medical center to make sure it’s the right treatment at the right time before you‑‑or no treatment. It may be watch and wait or worry and wait, but best not to get treatment until you absolutely need it.

I love Sherry’s counsel of having fun and take those bolt cutters to people who are not positive in your life and can’t walk along this path with you.

I want to thank, give my thanks to all of you. Dave, Neal, Cathy, Sherry, Sue, what a wonderful coffee clatch we have enjoyed here today. And in particular I would like to again thank the Patient Empowerment Network for sponsoring this and supporting the Patient Cafe. I know we’ll get lots of good feedback and responses from the good counsel of all of you empowered patients. Again, may name is Carol Preston. Please, everyone, be well.

Coping With Scanxiety: Practical Tips from Cancer Patients

“Every three to four months I get a wake-up call that my life has taken an unexpected turn. Believe me, there are daily reminders of how different I am now; but scan time is big time scary time, mentally. It takes living with cancer to yet another level of heighten sense of mortality and anxiety.  So MANY thoughts and what ifs course through my brain.  SO hard to shut it off.”  – Katie Edick, METASTATIC AND MAKARIOS.

It may not be officially part of the medical lexicon yet, but “scanxiety” is no less real for those of us who have experienced a diagnosis of cancer.   Pamela Katz Ressler, RN, MS, HNB-BC, founder of Stress Resources, describes scanxiety as “the anxiety, worry and fear that accompanies the waiting period before and after a medical test.” She says it is a common side effect of modern medicine. “As our medical system has become more technologically adept at measuring indicators of disease so too has our anxiety” she says. “Scanxiety is an unintended consequence of medical testing, yet it is one that is rarely discussed by medical professionals with patients.”

Writing in Time magazine in 2011, lung cancer survivor, Bruce Feiler, characterized scans as “my regular date with my digital destiny.  Scanxiety, he wrote, arises from the feeling of “emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.”

One of the most common emotional and psychological responses to the experience of cancer is anxiety.  Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer journey.  Did you know that the word anxiety comes from the Latin word anxius, which means worry of an unknown event? Worry, in turn comes from the Anglo-Saxon word “to strangle” or “to choke” – which may very well convey the feeling we have right before a scan, or whilst waiting for its results.

Anxiety is a natural human response that serves a biological purpose – the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. Symptoms vary for each person.  You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. Alongside these physical manifestations, you may feel irritable, angry or apprehensive and constantly on the alert for signs of danger. All of these signs indicate that sympathetic arousal of our nervous system has been activated, preparing us to stand our ground and fight or take flight and run away from danger.

Scanxiety, points out Katz Ressler, can be intense and may mimic symptoms of Post-traumatic stress disorder (PTSD). PTSD is an extreme anxiety disorder that can occur in the aftermath of a traumatic or life-threatening event. Symptoms of PTSD include re-experiencing the trauma through intrusive distressing recollections of the event, flashbacks, and nightmares. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC), points out “MRIs are very noisy – and because my recurrence was found through an MRI biopsy, I have many memories of scary results from that test.”

It’s been over ten years since I was diagnosed with breast cancer and while my scans are less frequent these days, the anxiety never fully goes away. As blogger and patient advocate, Stacey Tinianov writes, “This is reality even after almost five years with no evidence of disease. I’m not a worrier or a hypochondriac. I’m just a woman whose body once betrayed her by growing a mass of rouge cells that, if left unchecked, have the potential to bring down the house.”

If you are facing an upcoming scan and feeling anxious about it, you may find the following tips helpful. Based on my own experience and the experience of others in the cancer community, these tips are some of the ways in which we have learned to cope with scanxiety.

1. Identify your body’s stress response

How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.

2. Pay attention to your breathing

When we are stressed we tend to breathe more shallowly.  Shallow breathing, which does not allow enough oxygen to enter our bodies, can make us even more anxious.   When you feel stressed, practise taking some slow deep abdominal breaths.  Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.

3. Stay focussed on the present

Focussing on the past or future can increase your anxiety. Katz Ressler recommends staying focused on the present moment as a way to quieten anxious thoughts. “Methods that have proved successful for scanxiety focus on tools of resilience, often based on mindfulness strategies,” she says. “Key in these methods is to focus on the present moment and not on the outcome of a test or scan.” Focusing on each and every breath is an excellent way to begin to increase your awareness of the present moment.  If you would like to try some short mindfulness meditations to increase resilience and help decrease anxiety, you will find some on Katz Ressler’s website.

4. Use visualization

By enhancing your relaxation skills, you are can lower the fight or flight response that is often triggered during times of increased anxiety. Visualization involves using mental imagery to achieve a more relaxed state of mind. Similar to daydreaming, visualization is accomplished through the use of your imagination. Karin Sieger who has recently received a diagnosis of cancer for the second time, shares this advice, “I certainly keep my eyes shut when inside the machine; focus on my breathing; remind myself this has a start and finish; and then generally try and go in my mind to a calm meadow and have a snooze. Because for once there is nothing else I can or should do for the next minutes.”

5. Practical coping tips

Karin also points to the claustrophobic feeling of being enclosed in a scanning machine as a contributor to anxiety.  Stage IV breast cancer patient, Julia Barnickle recommends an NLP (Neuro Linguistic Programming) process, called the “Fast Phobia Cure” which worked for her. “I still don’t like enclosed spaces,” she says, “but I certainly don’t panic like I used to.” Blogger Margaret Fleming also recommends asking the attendants for any items that can make you more comfortable, such as ear-plugs or a blanket.

6. Break the worry habit

Worry can be a habit and like all habits can be broken.  As soon as that worry voice starts in your head, examine it before it takes hold. Ask yourself, will worrying about this help me in any way?  Julia writes, “For me, worrying is a choice – as is happiness. In the same way that I choose to be happy, regardless of what happens around me or in my own life, I also choose not to worry about – or fear – what might happen in the future. I tend to believe that things will work out for the best. And besides… what will happen will happen, regardless of whether or not I worry about it – so I don’t see the point of spoiling my enjoyment in the meantime. I prefer to get on with my life.”  Jo Taylor, who is living with secondary breast cancer agrees. “I have taken the view that nothing will change the outcome, therefore there’s no point in worrying,” she says.

7. Create an anxiety worry period

Many patients speak about the most anxious period of time being the time you are waiting for scan results. As stage IV blogger and patient advocate, Susan Rahn, writes, “Waiting for the results of any scan that will tell you if the cancer is active and taking up residence in new parts of your body is just as  anxiety inducing, if not worse, as the time leading up to and the day of the actual scan.”

You won’t be able to break the worry habit entirely and ignoring anxious thoughts and feelings can sometimes make them worse.  It’s still important that you acknowledge your worry but not let it control your life. One tip is to designate one or two 10-minute “worry periods” each day, time to fully focus on your anxiety. The rest of the day is to be designated free of anxiety. When anxious thoughts come into your head during the day, write them down and “postpone” them to your worry period.

8. Take Some Exercise

Exercise is one of the simplest and most effective ways to reduce stress and anxiety –providing a natural outlet for your body when you are exposed to too much adrenaline. Jo Taylor, who runs an Exercise Retreat To Recovery program in the UK, finds that staying physically active is helpful. “I am still very nervous in the time between scan and reporting, “she says, “but throwing myself into work or exercise or anything else I do is helpful.”

Virtually any form of exercise, from aerobics to yoga, can act as a stress reliever. The important thing is to get moving, even if that means just walking around the block. Movement with flow and rhythm can also help calm the body and mind. Katz Ressler recommends gentle yoga and walking meditation as proven ways to decrease the stress response and increase the body’s natural calming mechanism. “Finally, remember”, she says, “while you cannot control the outcome, you can work to control the experience and that starts with building resilience.”

I hope you will find these tips helpful and if you have any other coping tips please feel free to add your advice in the comments below.

Sleep Deprivation Caused By Cancer

Both the scientific and medical community agree that the average adult requires at least 7 hours or more of sleep each night to maintain general good health and well-being according to a Centers for Disease Control and Prevention report. Sleep deprivation is an issue for people with medical conditions like musculoskeletal cancer, with a lack of sleep exacerbating the medical condition further. Read on to find out more.

Causes of sleep deprivation in cancer patients 

Sleep disorders, such as difficulty falling asleep, maintaining a sleep period, disruptive sleeping patterns, early awakening, and excessive daytime sleepiness, are prevalent in patients with cancer. Research by the National Cancer Institute indicate that up to 50% of Americans experience sleep deprivation during or after cancer treatment.

The causal factors that may lead to sleep disruption for cancer patients can be side effects experienced from the treatment, medication being taken, protracted stay hospital visits and the stress. The physical changes caused by the cancer can create biochemical changes that can impact your usual sleeping pattern. If sleep is disturbed over a prolonged period this can lead to fatigue and depression that compounds the other causes.

How can you help improve your sleep?

Sleep is important for us all but, for cancer patients it can be a critical need in the recovery process. There are several steps that can be taken to help improve your sleep. Assess your sleeping environment to see if it can be improved to make sleep more comfortable. You may need to consider changing your bed or mattress to improve sleep quality; is the bedroom too hot or cold; is noise a factor for example external or a snoring partner.

Discuss your sleep problem with a medical practitioner who can decide if sleep therapy treatment such as light and stimulant therapy or cognitive behavioural therapy that has been shown to help 70-80% of cancer patients with their sleep. Also, try relaxation exercises before bedtime and there are several different sleeping applications available that can help you.

For those with cancer the stress and anxiety caused by the condition and treatment can naturally lead to sleep deprivation. It is important to understand that this is common for cancer patients and there is help available and things that can be done to help with the problem.

Myeloma Patient Cafe® June 2018 – Participating in a Clinical Trial

Host and Multiple Myeloma patient, Cheri Rineker, leads a panel of Multiple Myeloma patients who have all participated in a clinical trial. The panel discusses what it’s like to join a clinical trial, how they got into a clinical trial, and what it takes to be in a clinical trial.


Transcript:

Cherie Rineker:

My name is Cherie Rineker, and I will be your host today.  Today we will be discussing what it’s like to join a trial, how we got in one, and what it takes to be part of a trial.  We have a lot to cover, and we have four guests that were kind enough to take time out of their busy days to share their experiences with us.  So having said that, I would like to start by asking you, Brian, where are you from, when were you diagnosed and what were some of the trials you were part of?

Brian Helstein:

I am from Southern California I’m one of the five people you will ever meet who was actually born in Hollywood.  I was formally diagnosed in February 2011.  In retrospect, symptomatic throughout most of 2010, but that’s with 20/20 hindsight.

At the time that I was considering undergoing a stem cell transplant I was offered one clinical trial through City of Hope which formally is identified as BNTCTN0702.  It was a three‑arm stem cell transplant trial where one arm would get two stem cell transplants, one arm would get a single stem cell transplant and go directly to maintenance, and a third arm would get the stem cell transplant, go through consolidation therapy and then go to maintenance.  And I was in that third arm at the time that that was offered to me‑‑I work in higher ed, and at the time that that was offered to me I said, certainly.  If I’m going to be sick somebody besides me needs to learn from this.  So I signed up for that.

And when I was going through the consolidation therapy they asked me if I wanted to participate in another trial that was‑‑that was attempting to monitor my maintenance and so that they wanted me on a specific maintenance regimen, and I signed up for that one.  So I was on maintenance from that from spring of 2012 through September of 2017.

Cherie Rineker:

Excellent.  Thank you, Brian.  What about you Matt?  Where are you from and what year were you diagnosed?  What studies have you participated in?

Matt William:

Hi, Cherie.  I grew up in Santa Cruz, California, but I was diagnosed in 2011 in Anchorage, Alaska, and then eventually moved to here in Kauai.  I live in Kauai now.

And I have been in four different trials.  The first one I don’t remember.  It was pretty minor, just a different combination of drugs that were common drugs.  And then my second one was my cells with radioactive antibody isotope injection and then followed by an allotransplant.  And I had a stem cell transplant before that, so that was my second one within a year.  And then I wasn’t given much time left, and I was sent to City of Hope for a study on an agent to help with deletion 17p, and that was followed‑‑let me look at my notes here.  I dasanutlin and (?) ixazomib with dexamethasone, and that helped bridge the gap.  I wouldn’t have made it to my CAR‑T trial without that.  And then eventually just recently finished up a CAR‑T cell trial in Seattle.

Cherie Rineker:

Excellent.  Thank you.  Eric, can you tell us where you’re from?

Eric Wolf:

Yeah, thank you.  I’m from Southern California also, grew up in Pasadena, California.  Was diagnosed in 2012 with a vertebra collapse.  That’s how my disease presented.  I have been on four different trials.  Post transplant in 2012, I was part of a shingles vaccine trial.  Don’t know if I got the placebo or the vaccine.  It was one of those types of trials.

Since then I was on a drug trial that did not work.  And then most recently I am currently on a trial.  It’s an antibody‑drug conjugate trial through City of Hope, and as part of that I did a gene sequencing trial.  So four different trials, and currently on an antibody‑drug conjugate trial.

Cherie Rineker:

Excellent.  Thank you.  Thank you.  And last but not least, Barb, could you tell us a little about yourself?

Barb Hansen:

Hi.  Thanks, Cherie.  This is a great opportunity, I think.  I am from Morrison, Colorado, which is a small town outside of Denver.  I was diagnose in 2006, December 6.  This was after breaking a rib back in March, so it took quite a while to get my diagnosis.  And I had been in a clinical trial, the CAL GB100104, which was the trial that helped set the protocol for stem cell transplants now.  That happened back in October of 2007.

And my doctor had talked about a stem cell transplant for me, and then later I found out, like two weeks later I found out it was going to be part of this trial and didn’t want to participate.  And when they said it was going to be a 15‑year trial I said, yeah, sign me up.  So I had the stem cell transplant October of (?) 2017, and then was given the maintenance drug the following February, and then took that maintenance drug for five years and have been in remission ever since then.

Cherie Rineker:

Excellent.

Barb Hansen:

Thank you.

Cherie Rineker:

Thank you, Barb and everybody.  Well, many of you know me.  I was diagnosed in November of 2012 after six months of much back pain and severe fatigue and was diagnosed with multiple myeloma while in the ICU.  And they found three tumors on my spine.  One had gone into my spinal cord, and they were surprised I was still standing.  And then I did nine induction therapies which only brought my counts down to 80 percent and my bone marrow.

But they went ahead and did a stem cell transplant followed by another, and then I went through a total of 13 lines of therapy.  And when the 13th wasn’t successful, relapsed again in December of last year, I told my oncologist that‑‑who wants to put me on four chemo drugs instead of the usually three, I said I want to tryout the CAR‑T.

So very, very sick, I started making the trips to Sarah Cannon, which is about a 14‑hour drive from our house.  And was accepted into the trial and received my CAR‑Ts on the 12th of March, and a few weeks later I showed no myeloma at all in my blood and then also none on the PET scan and none in my bone marrow.  So what 13 lines of treatment were not able to do over 65 months, CAR‑T basically gave me my life back within weeks.  And I’ve become a big proponent of trials ever since.

So what’s a myeloma clinical trial like?  The experiences are probably as vast as the amount of patients that are in it.  Matt, allow me to start with you.  What made you decide to join a trial, and how did your experiences compare to the actual expectations that you had?

Matt William:

Gosh, with my most recent trial I was at the end of the road.  It was the last house on the block, so I was eager to get in and did everything I could to do that.  I was turned down all over the place.  I was on the list in several places including China, and I was told that I only had a couple of months to live and that I probably wouldn’t‑‑there was a‑‑I had an allotransplant so I was being turned down because of that.

And then Seattle Cancer Care Alliance came up with a study that I heard about just through word of mouth.  Although I was a patient there I was not aware of it.  Somebody told me on social media about it, and I got my name on the list.  And my doctor told me I wouldn’t make it, that it wasn’t going to open in time for me, and he was kind enough on his own time to do some searching for me and found the City of Hope trial that targeted my 17p deletion problem.

And so I was willing and eager and trying to get in everywhere and was continually disappointed being turned down, and I thought it was going to happen again there for sure.  And I was lucky, there was a doctor, the Dr. Green there was‑‑opened it up a little bit.  There was many reasons for him to exclude me, but somehow I just squeaked in there, and my story is very similar to yours.  Shortly after, in 28 days, I had no sign of myeloma in my marrow or my blood.

There was a little bit left in my PET scan, but I just got back last week from Seattle and there’s zero sign of myeloma now after my 90‑day test.  So I’m just so grateful for clinical trials and to be able to finally get into the CAR‑T trial.

Cherie Rineker:

Yes, Matt.  We’ve gone this journey together, and I’m so, so thrilled to hear about your results from last week.  Brian, you can you tell us about why you decided to join the trial?

Brian Helstein:

Seriously, I really have spent my entire working life‑‑I’m getting ready to retire, and I’ve spent 50 years in higher ed.  I really, really had no clue at the time of diagnosis life expectancy or anything along those lines, and I figured, you know, that I was going to learn how to deal with this, that or the other infirmity the treatment was going to cause, and other people needed to know how to do that and do it better.  They needed to learn from my experience.  It wasn’t‑‑it just wasn’t something I was prepared to take with me.

And I must say I’m somewhat rebellious about things.  I have a dermatologist at this point who does not like me to go running out in the sunlight without a hat, without a long‑sleeved shirt.  If he had his way, I would also have ski mask and tights on.  No exposure to sunlight, and I have been known to go for a long run in my running shorts and shoes.

This was not going into a clinical trial where I was going to be told you’re going to take these drugs on this day, you’re going to show up at such and such a time on that day.  I knew that I was going to have to be disciplined, and I was going to have to follow exactly the protocol of the trial if it was going to be of any benefit to other people.  So I made that compromise.  I’ll go running without a shirt once a month or whatever, and I will be at the doctor’s office at, you know, 10:15 if that’s the time I’ve been summoned for.

I don’t know any other way to put it.  It was a matter of being disciplined so I could share so that others could benefit from this.

Cherie Rineker:

Very good reason.  Very good reason, Brian.  Thank you for sharing.  Eric, why did you decide to join a trial?

Eric Wolf:

Yeah, I think in some respects they are easy, right?  So the one that I did having to do with‑‑what is it, the shingles trial, it was there, it was offered to me.  It didn’t require much of me but calling in and reporting once a month on what‑‑if I experienced anything.  It was really easy, and so in some sense there’s those types of clinical trials that are just sort of tag‑ones to what we’re already doing.  Same thing with the extra marrow that was collected to do my gene sequencing.  That was not really a big deal.

But like yourself and Matt, there are other clinical trials that we seek out on our own part because we need those to manage our disease, and that was the case with the other two trials I’ve been on.  You know, the one I’m on now is because, as much as we don’t like to admit it, our options are limited, and so this is a trial that’s there and available and the timing lines up, and so you do it.

Cherie Rineker:

Excellent.  So anybody else besides Matt and I has had to travel long distances for their trials?  And then Barb, I’d like to ask you the same question as well, so maybe you can answer that.

Barb Hansen:

Well, I certainly didn’t have to travel.  I’m right here in the Denver area.  I think what really helped me make the decision, and my family helped also, is that I really felt confident with this new doctor I was seeing.  I had seen someone for five months, a hematologist‑oncologist who was not a specialist in multiple myeloma, and then after attending a stem cell seminar and this doc answering five questions in like five minutes I just felt very confident with him.  So I started, I transferred my records and just felt very confident with my healthcare team, and it was his recommendation.

Also, I have kind of a science background and my son does cancer research, and I know that the new science isn’t going to happen without clinical trials.  I’m a real advocate for clinical trials and did‑‑I volunteered for Colorado Cancer Research Program, which coordinates all the trials.  So it’s been a rewarding experience.

Cherie Rineker:

Thank you, Barb.  I see you wrote an article at one point about to trial or not to trial, that’s the question.  And I was very surprised in my research how few people actually participate, grownups versus children.  And I found it wasn’t just the grownups fault, or not wanting to do it, but it’s actually not as easy as Matt and I found with the CAR‑T, and maybe some of you as well, to get into a trial because there are so many requirements in order to get into that.

Did any of you have that issue or an issue of travel, money, or health that made getting into a trial challenging?  Matt, start with you.  I know you had to travel very far.

Matt William:

Yes.  When was I was diagnosed I was in Alaska.  There wasn’t really a myeloma specialist, and we got online right away and found the Seattle Cancer Care Alliance, and we’re really happy there and found a great doctor there.  But we had‑‑for my first transplant we relocated down there for 10 months.  Luckily, they had a little school and some‑‑for our kids and some housing.  But it was expensive.  It wasn’t free.  They had a social worker that helped us a lot, and we did some fund‑raising.  Lots of really great friends that helped out and just really streamlined our finances and our bills and sold a lot of stuff to fund it.

And, yeah, it was very expensive, and yeah, over time it’s really taken a toll on all of our savings and investments and all of that stuff.  But it’s worth it, you know.  Money can be remade and we can live simpler.  And so it was very much worth it.  If I wasn’t flexible with that type of stuff I wouldn’t be alive, so I had to do it.  And I would go to any lengths to find help and an answer to my problem.

Cherie Rineker:

Right.  Right.  Thank you.  Thank you.  I totally understand what you mean, having a young child in my family myself.  We have four beautiful daughters.  So thank you.  We’re glad you chose to hang in there.

Can anyone tell me about how they found out about the trial they joined?  Eric, can we start with you?  Today, online offers a tremendous amount of resources.  Which one, if any, did you use, and how do you stay informed about the latest trials?

Eric Wolf:

A little bit like Matt.  I made the decision to move to an area where I knew there would be good support when retired from the military, so I moved up into the LA area near City of Hope knowing that they had fantastic care and availability of trials and other things like that.  So I get most of my information through them.

Also, of course, read blogs and read information from the IMF and other things that are coming out.  And that all leads to trying to make the best decision.  So in the case of my current trial it was a matter of talking with my doctor and look at actually three different trials that were available, any of which could have been a good fit for me.

And then it’s a matter of which one‑‑then it’s kind of a matter of timing, right?  It’s just are you sick enough, ironically, to meet all the qualifications for this or that particular trial.  And so that’s kind of how I made the decision in concert with my doctor looking at the options available.

Cherie Rineker:

Right.  Thank you.  Thank you for sharing that.  Brian, what about you?

Brian Helstein:

I was on the fence about having a stem cell transplant, not on the fence about joining a trial.  And the‑‑my caregiver, my darling wife, basically pushed me off the fence and said, you will have this.  I’ve heard your doctor say that you will have a much better opportunity for long‑term survival if you go through with this.

So at City of Hope, as I was being interviewed and prepped for the stem cell transplant, they gave me a list of options which included amongst other things the participation in a trial.  And I was impressed with what they were looking at.  I was impressed with what the options were.  Unlike Eric’s comment about the shingles trial where he might have gotten a placebo, there was no placebo involved here.  There was standard of care treatment, there was standard of care plus and standard of care plus plus, which was what was going to be offered.

So it was at that point a fairly easy decision saying, okay, I have made this commitment to go ahead with the transplant, so let’s see about going ahead with the trial and, as I say, being disciplined enough for follow directions.  But it wasn’t‑‑there was no hesitation about it.  It was not something where there was a specific start date, again, like Eric, where I needed to fit in or I needed to be so sick or so healthy.  It was very much you’re going to do a stem cell transplant, and then beyond that we’re going to put you into one of these three arms and we will monitor you from that point.

Cherie Rineker:

Right.  Right.  Thank you, Brian.  Barb, I’m not sure.  Did I already asked you this question, or do you have anything to add?

Barb Hansen:

Well, my stem cell transplant was part of a clinical trial, and when my doctor said to me with a stem cell transplant you might be able to take a drug holiday.  That was appealing to me, so that combined, you know, being part of the clinical trial then was a bit of a driving force.  I hated being on dexamethasone.  I did not sleep well for, well, a long time.

And then, you know, I just can’t encourage people enough to find a multiple myeloma specialist who really knows this complicated disease and treats people individually and just knows what’s best for the patient.  And I was very glad that I joined the clinical trial, and I certainly advocate for them whenever I get a chance to.  Thank you.

Cherie Rineker:

Excellent.  So what advice do any of you‑‑do we all have for those myeloma patients that feel overwhelmed now and through the entire process, what they can do when they feel they’re running out of time or options?  What is it that you would like to tell them?  What has helped you on the internet?  I know Brian at SparkCure really helped me to find the trial that I got into, BB2121, a Celgene CAR‑T trial that ended up giving me my life back.  Just like Matt, I only had a couple months left.  What would you tell others?  Eric, do you maybe care to answer that first?

Eric Wolf:

Yeah.  So this disease of course is real science‑e, and we’re always thinking one step ahead, what’s the next thing, what’s the next thing?  So part of that calculation should be clinical trials, and so you have to keep up with what’s going on with those.  There’s a lot of information out there in different blogs on Cancer Care Network, on Sparks, and those types of things.

Of course, if you’re fortunate enough to be associated with a Cancer Research Center like City of Hope, then that’s a great opportunity.  They have posters throughout the campus about different trials that are going on, and of course I can reach out to my doctor at any time and look at those things.  But I think that all goes into our calculation of how we’re going to manage our disease and what’s the next step for us.

It’s‑‑different people have‑‑and I’ve ebbed and flowed over the years about how much I want to be involved, and sometimes you just want to take a break.  You just want to just do whatever my doctor says, and I don’t want to think about this disease for a while.  I just want a couple of months off.  We have that option, but it always comes back and comes to the forefront.

So I think as‑‑the advice is to look ahead, think ahead, keep up with what’s out there, but don’t let it overwhelm you.  At some point you have to live your life and just not‑‑you can’t live for the disease, live every day thinking about the disease.

Cherie Rineker:

Right.  I think we all agree with that, Eric.  Matt, what would be any of the advice you would give?

Matt William:

Just going back to how I accessed some of the trials.  It started with me, just through my doctors.  I had three trials that were just recommended by my specialist, and then it led to‑‑once I got to the CAR‑T cell therapy it was a little harder to find.  And I started with the Leukemia and Lymphoma Society, and they were very helpful, and they actually taught me how to do a little searching myself.

And then I got into some Facebook chat room type stuff where I was getting more information, and that’s where I met you.  And you recommended SparkCure, so it kind of led to that.  And I was doing my own stuff, and I met couple other people that kind of were like Brian, helping out.

But ironically, it turned out to be, you know, I like sending little messages, private messages to people and making acquaintances, and I became friends with this guy, Grant, from South Africa.  And he’s the one who told me about the trial that I finally got into, and it was at the very hospital that I was at, but I was unaware of it.  And he told me so early I got my name in there.

So I think, leading up to your question, persistence, you know, and don’t give up.  And just take it one day at a time.  And I like the advice of don’t get overwhelmed with it and just keep a good attitude.  And then ultimately be flexible.  There’s a lot of help out there and I’m continuing to be helped with my air fare and stuff like that, I forgot to mention before.

And so there’s a lot of‑‑don’t get overwhelmed by the money.  There’s some help out there for that, too.  And just one day at time and don’t give up and just try to reach out to other people and get‑‑the personal information, one patient to another online probably ended up being the most beneficial to me.

Cherie Rineker:

Thank you, Matt.  And I completely agree with you.  I’m pretty busy on Facebook myself, and I had people pushing me when my body and my mind could not handle any more and I wanted to give up.  And there was one lady in particular who just kept nagging me about it, and just to quiet her up I started following her advice and stuff.  And then one thing led to another, and I’m sitting here today because of these personal experiences.

And just the other day there was a gentleman who just basically said, I’m at the end of the line, can’t do no more, and I’ve been working really hard today and yesterday to write letters and talk to my doctors and to try and get him, because I know when we’re that sick sometimes it’s really hard for us to do it ourselves.  So absolutely there’s support you can get online‑‑

Matt William:

One more thing, Cherie.  I forgot to mention, it’s so important, Patient Power has been amazing with their videos and these interviews, and it really helped get me pointed in the right direction as well and some hope about CAR‑T cell and a little extra information and got me excited and added some hope to my journey.

Cherie Rineker:

Absolutely.  Absolutely.  We owe a lot to Patient Power.  What about you, Barb?

Barb Hansen:

I’m very pro clinical trials, and I do have a couple of venues where I’m able to encourage people to check out that option.  One is our multiple myeloma journey partner program, and because I tell my story there having had a stem cell transplant I also include the clinical the trial stories.  And so when I’m doing that I encourage people to check out the possibility, the option of going through a clinical trial.  And here in the United States we really need to encourage people to do that.

And then the other avenue I have is through the Leukemia and Lymphoma Society first connection program.  The Patti Robinson first connection program where I get calls from the society asking me if I’m available to talk to a person who is in another part of the country or here in Colorado.  And so it’s a person who just wants a call.  They’re either newly diagnosed or they’re going to go through a stem cell transplant or they’re considering a clinical trial, and so we chat and talk and I, you know, point out what I’ve been through and what has worked for me.

Always encourage them to talk to their doctor, and I don’t give medical advice by any means, and it’s encouraging.  Very rewarding to talk to people like that.

Cherie Rineker:

Thank you, Barb.  Yeah, you just taught me about two things I’d never heard of, so that is wonderful.  And I really think when patients talk to each other we can tell other things that the pretty pamphlets that are sent along with our Revlimids or our Velcades doesn’t always talk about all the things that we really experience.  So it’s wonderful to hear a person who’s been there explain things to us.  You, Brian?

Brian Helstein:

What I would tell somebody, first of all, is take a deep breath.  It ain’t going to kill you today.  And then the second thing, as we move forward with this, after you’ve had that deep breath, start evaluating what’s important to you, how hard are you prepared to fight this.  This goes to what Matt was talking about, the kind of thing that Eric was talking about.  What drives you?  What motivates you to keep going, and to keep those things in your mind?  It will make a tremendous difference in how you approach your various treatment options, the people you work with.

Barb was just talking about talking with, working with her doctors, and one of the things that I think all of us will agree on is you have to feel comfortable with your doctor, and if you don’t, it’s time to find a different doctor, a different treatment facility, whatever.  You need to be comfortable as you’re working with these people.

And, again, I think it was you, Eric, said sometimes you want to turn your mind off and stop worrying about this thing for a little bit.  I find that that’s fairly easy to do as long as I keep in front of me why I’m prepared to keep fighting, to keep going.  At that point, having made that decision, having put that focus on, it makes it easier for me not to focus on being sick.  And that’s something I would tell somebody, is why are you here?  What do you want to do with the time you’ve got left?

None of us are getting out of here alive.  Seriously.  All a diagnosis of multiple myeloma does is say, okay, you’ve got something that can kill you, and now you can put a name on it.  That’s bringing home in a very visceral way something that we probably intellectually knew but were not emotionally prepared to deal with.  And so focusing in on what’s important becomes very important part of moving forward.

Cherie Rineker:

Having a purpose in life is so very important.  I always tell people that even when you have cancer you can beat this disease if you keep in your mind you can, like you said, know what’s important, why you’re fighting to stay here, and then just do what you have to do.  Absolutely.

I would like to ask one final question of all you, all my guests here today.  How is life treating you today?  How are you feeling?  How are the drugs doing?  How are the side effects?  How are you sleeping?  And what is motivating you?  I know, for you, Brian, it’s your running, correct?

Brian Helstein:

Well, I’m working on the retirement actually.  Running is just like you brush your teeth in the morning.  That’s just a normal activity that I do.  Yeah, it’s just something that is part of my daily life, but, no.

I’ve been running a program for the University of Southern California, for example, that enables access to all of our licensed electronic resources, books, journals, databases, for the last 13, 14 years.  And I’m trying to clean up my sloppy programming, document my work, and train the people who will be my successors.  So that’s my real daily operational motivation at this point.

I’m not doing anything other than looking forward to some silly things in retirement.  I want to be on the Champs‑Élysées one day when the Tour de France ends.  Okay?  It always ends on the Champs‑Élysées.  That’s one of my goals in life.  It’s not a major driving force.  I have five adult children.  I would love to see some grandchildren.  That’s something you can’t control.

Cherie Rineker:

Right.  Eric, what about you?  How are you doing these days?  You look really healthy.  All of you, by the way.  Looks like we’ve taken on the beast and we’re winning.

Eric Wolf:

Like Brian, I’m trying to retire again.  After one retirement from the military I’m trying to retire again and just kind of working on some other things.  The clinical trial I’m on now, it’s been very rough.  It’s pushed my blood counts down, so I’ve had trouble with bruising, had trouble with shortness of breath and just getting enough energy.  So working through that, and who knows where this will lead, maybe CAR‑T or something else.

But, ultimately, the things that I like to do, I like to ride my motorcycle.  I like to backpack and camp, although the backpacking has been kind of cut short these days.  Just have done a lot of that over the years.  And looking forward to spending more time with the grandbaby.  We have a two‑year‑old granddaughter now, so enjoying that time.  I will say though, ultimately, my hope is in eternity.  And that’s from my Christian faith.  I’m enjoying life.  I’m enjoying fighting the disease, I actually am, and I’m positive about that.  But, like Brian mentioned, we’re all‑‑we’re all going to die eventually, so my hope is ultimately in eternity and the joy of that.  So that’s kind of where I am.

Cherie Rineker:

Thank you for sharing.  Very nice.  How about you, Matt?  Girls keeping you busy?

Matt William:

Gosh, yes.  I have so much to live for.  And I just turned 50.  We didn’t think that was going to happen.  We’re expecting a grandchild in December, I didn’t think that was going to happen.  We just found out about that.  And, you know, I really like what you just said.  You know, cancer hasn’t been all that bad to us.  It’s been‑‑we’ve had our share of struggles.  But I’ll tell you what.  Our quality of life has actually gotten better.  It’s brought us closer together, closer to our god, and we just really don’t take things for granted so much anymore.

And there’s a lot more to look forward to in the future.  I’m an avid surfer, or was.  I haven’t been out in the surf in over a year, and‑‑because of some phone problems, but I’m thinking that’s not too far away, that I’ll be able to start slowly back at that.  And just continuing to raise these kids and enjoying life, you know.  And just one day at a time, not worrying about what’s coming next all the time, you know.  I feel like I have that little break right now.

Cherie Rineker:

Absolutely.  Enjoy it, enjoy it, my friend.  Thank you.  What about you, Barb.  What are your aspirations?

Barb Hansen:

Well, I’m just so thankful to be here.  When I started Googling back in 2006 and even talking to my dear doctor, Dr. Jeff (?) Mathes at Colorado Blood Cancer Institute, Richards Rocky Mountain Cancer Center, you know, back then the average life expectancy was three, four years, and now it’s upward of 10, and I’ve beat that so a far.  So I am just so thankful to my healthcare team and just grateful to be here enjoying my two grandchildren, who I did not think I would have either.  Forest and Estelle, they are the joy of our lives.  Really enjoy them.

I golf a little, nine holes.  I do get tired because.  Of all of back issues, the bone fractures that I had, I do tire.  I love doing the volunteer work that has come my way, and now there’s more work they’ve asked me to do primarily through our church.  And I’m going to have to start saying no.  You know, I’m just taking a break and really enjoying life.

Tomorrow I’m going to Boise to talk to a support group about my journey, and I look forward to those times.  It’s really neat getting to be with other people who have this crazy disease and just showing them I’m still here.  I went through a stem cell transplant, a clinical trial, and it’s encouraging to help give other people‑‑help them with their journey and be hopeful.  Faith, family, and just enjoying the outdoors, creation.  That’s what it’s all about.  Thank you.

Cherie Rineker:

Yes, thank you all.  For me too it’s my family.  It’s also I became a huge advocate just for myeloma patients.  Because it took so long for them to diagnose me I always thought if my story and my symptoms are out there and somebody is seeing a YouTube of mine and that makes them go to a doctor and find out and say, hey, I want an Kappa light chain test or a Bence Jones 24‑hour urine test or anything.

Or even a doctor that would become more aware because we are putting ourselves out there with our stories, and if even just one person won’t be diagnosed with stage III but maybe as stage I and have a better chance of long‑term survival then I’m extremely grateful for putting myself out there.

So besides enjoying my family I really helping Patient Power and anybody else who comes knocking on my door, whether it’s through Facebook or companies giving talks, giving interviews, anything like that.

So I want to thank you panel for sharing your stories, giving your advice with us today.  As we all know, myeloma is a very difficult, painful disease to control, and I know without online support and things like Patient Cafe and SparkCure it would be a lot harder for me and I likely wouldn’t even be here today.

Thanks also to our listeners for tuning in.  We hope we were able to answer some of your questions about trials and how to get into them.  Reach out to Patient Power with any questions, please.  And we hope you’ll tune soon in again for our next show.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or Patient Empowerment Network. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

 

Take the Plunge: How Swimming is Empowering Cancer Patients

People with cancer can stand to benefit from the many positive effects of indulging in swimming. It is one of the top 10 favorite physical activities according to the 2013 Recreation Survey. Swimming for fitness also grew in popularity, jumping to 2nd place behind walking according to PHIT America. It not only keeps you in a good shape but also offers many advantages empowering patients with cancer. From acquiring survival skills to enjoying the soothing effects of the water, swimming is a form of physical and recreational activity that provides immense advantages to everyone.

Swimming is An Empowering Exercise

There’s probably nothing better than swimming. Often dubbed as the perfect workout, it is a less weight-bearing form of exercise supporting your body in the water. It enhances muscle strength, improves endurance and keeps you in a good shape. In addition, research studies show that swimming has positive effects on the mental health. It improves moods, relaxes and calms the body.

For patients affected by cancer, swimming is a physical activity that offers benefits during and after treatment. Studies also show that even those with advanced stage cancer can take advantage of the gains offered by the activity. It helps combat the side effects of the disease by decreasing the intensity of symptoms such as pain, fatigue, and peripheral neuropathy. Through physical activity, people with cancer can relax relieving stress and reducing depression caused by the illness. Quality of life is, therefore, improved through physical activity such as swimming.

A Skill with A Lifetime Value

Swimming not only provides physical and mental advantages to cancer patients, it is also a skill that you can use throughout your lifetime. It equips you with the ability to judge situations in the water, find the best solutions and cope with challenges. Although over half of Americans or 56% know how to swim according to the Red Cross Society, the ability to swim is not merely judged by being able to tread or putting your head above the water. It is also the skill to find a way out of dangerous situations and preserve your life. Swimming teaches you how to stay safe in the water. Moreover, the physical activity enables you to know how to rescue others who are in trouble safely. It also trains you how to overcome any fear that you may have such as being in or near to water and even drowning.

For patients who are going through the cancer disease, swimming is a great form of exercise that offers physical and mental benefits. It helps in decreasing the uncomfortable symptoms of cancer and assists in improving overall wellbeing. Above all, it is a life skill that can save your life and that of others.

Living Well with MPNs – The Power of Diet & Exercise

The Power of Diet & Exercise: Advice From MPN Experts

Living Well With MPNs: The Power of Diet & Exercise from Patient Empowerment Network on Vimeo.

The expert panel featured renowned MPN specialist and researcher Dr. Ruben Mesa and was joined by other experienced clinicians and patients on the broadcast, to share knowledge and advice about the benefits of a healthy lifestyle when dealing with myeloproliferative neoplasms (MPNs).


Transcript:

Andrew Schorr:

And hello, wherever you may be. Welcome to this Patient Empowerment Network program. I’m Andrew Schorr from Patient Power. We’re going to discuss the power of diet and exercise, and get advice from MPN experts. We want to thank Insight Corporation for their support. We’re gonna cover the country – the U.S. country – today with our experts. I have my own experience with an MPN, myelofibrosis, diagnosed in 2011, and I’m an avid runner, and I like to go to the gym, and I certainly like to have my weight be just right. Some of this has been a challenge along the way, and we’re gonna get advice from the experts on that. We’re also gonna meet a patient from New Jersey, and we’re gonna meet a noted expert from San Antonio, and a dietitian who’s an expert in oncology diet, and she’s in North Carolina.

So, let’s get started. And remember, you can send your questions to MPN@patientpower.info. And if you have some favorite recipe or some exercise tip, send that too. All right, let’s go first to Westfield, New Jersey, about 19 miles from New York City, meeting someone who grew up in Brooklyn but now lives with her family in suburban New Jersey, and that’s Julia Olff. Julia, welcome to the program.

Julia Olff:

Hi, thank you very much.

Andrew Schorr:

Thank you, Julia. Now, Julia, you and I have met a couple of times. We did a Town Hall event in New York City near Grand Central Station, and you were there. And then a few weeks ago, we were all at Cornell Weill, and across from where you used to work for five years at Memorial Sloan Kettering. So, as I understand it, nine years ago, you were diagnosed with ET, and then a year later, it became what I have too, myelofibrosis. How did it start?

Julia Olff:

It really was diagnosed incidentally through a physical – annual physical exam and routine blood work.

I think in retrospect, I had symptoms. Probably like other folks, I had thalamic migraines over the years and some blood abnormalities, but it was really a physical exam. And I was not symptomatic that I was aware of at that time.

Andrew Schorr:

Okay. And it didn’t worry you, at that point.

Julia Olff:

I mean, I know we’ll talk more about it. I worked in health education. I worked on patient education materials at the time. When I was told I had ET, I was sort of thrown because I was one of those people that were always healthy, always focused on health. And it concerned me, but I was not yet worried.

Andrew Schorr:

Okay, so here comes myelofibrosis.

Julia Olff:

Right. That worried me. So, that also was diagnosed at that point then through bone marrow biopsy, and they were able to determine some initial mutations related to myelofibrosis.

And I saw a local oncologist, who was now more serious about this as the more serious form of the illness, and looking on the Internet. And now this is actually about 2008. You know what kind of information was available at the time. It was pretty dire. So, that kick started my getting more serious about it.

Andrew Schorr:

Okay. Now, you’ve had some hospitalizations, too. So, it’s been up and down, right?

Julia Olff:

Yeah, I think it’s a real ebb and flow. I feel, in a lot of ways, fortunate that it’s nine years out, and I have not had some of the hallmark symptoms that others have. But I have had these strange, sort of out of nowhere; I can feel fairly good, barring fatigue and some pain. And then out of the blue, I had a TIA. I’ve had a few hospitalizations for colitis. And those set you back, you know?

They take a good six to eight weeks to recover. And if you saw me in August, you would see the really lethargic, slow-moving me.

Andrew Schorr:

So, what’s your exercise routine?

Julia Olff:

Well, I know we were talking earlier. I had two dogs, most recently one, and he just passed away. That has been my exercise routine. So, I don’t feel energetic enough to do things like biking, even though I have a lovely bicycle. But I do try to walk every day. And right now, I’m feeling well enough that I push myself to walk a little longer. And I think as it gets darker in the year – I’m on the East Coast. As it gets colder, I do really have to push myself. But I wholeheartedly advocate for having a pet, because you need to get out, and that really helps a lot. So, walking is key for me.

Andrew Schorr:

And diet, I know. So, you’ve got a high school kid at home and a college kid who’s coming back. And you’ve had five children in a blended family, I know. So, it can be a busy place. What do you eat, and what do you eat consciously that you feel helps you as you’re living with an MPN?

Julia Olff:

Well, I think the thing that’s helped me the most is actually following Weight Watchers. And I know we were talking earlier that being on Ruxolitinib or Jakafi has added pounds. And it has. And that sort of prompted me. I finally got fed up with myself, and I joined Weight Watchers. And I think the most important aspect of Weight Watchers is, one, portion control. And then the other part is eating fresh food. So, that changed or really pumped up my diet. So, one, I started to receive organic groceries delivered to the house, which also helps a lot when you’re feeling fatigued. So, I try to eat as many fruits and vegetables at every meal. And I feel like that’s helping me.

Andrew Schorr:

Okay. All right. We’re gonna get more from you along the way. And I want you to chime in with questions. Let’s meet one of the best-known experts as a physician devoted to treating MPNs, and that’s Dr. Ruben Mesa. He recently moved from where he was with Mayo Clinic in Arizona, and now – you’ve got a long title, Ruben. I’ve got to give it. It’s Director of Mays Family Foundation, Distinguished University Presidential Chair Professor of Medicine at the UT Health San Antonio Cancer Center. I’m so glad I got it right. Ruben Mesa, welcome to our program. It’s great to see you again.

Dr. Ruben Mesa:

Hey, it’s always a pleasure to be on these Patient Power events.

Andrew Schorr:

Thank you so, much. And Patient Empowerment Network program. Thank you so much, Ruben. So, Ruben, we’re gonna come back to you and have you really put diet and exercise in perspective.

And I know you’ve seen thousands of patients. And I’m sure patients have shared with you every diet, every kind of exercise. You’ll have stories to tell, won’t you?

Dr. Ruben Mesa:

Absolutely.

Andrew Schorr:

Okay. All right. Let’s skip over to Winston-Salem, North Carolina, and meet someone who’s been on other programs we’ve produced. And that’s Julie Lanford. Julie is a registered dietitian, nutritionist. But beyond that is at Cancer Services, a nonprofit in North Carolina, Julie is an oncology dietitian. Julie, welcome to the program.

Julie Lanford:

Thank you so much.

Andrew Schorr:

Let’s get started. So, first of all, Ruben, we’ve heard you talk a lot about the differences in MPNs. And so, really, there’s not a one size fits all, even really the diet and exercise, Ruben, is there?

Dr. Ruben Mesa:

There truly is not. I mean, certainly, with MPNs, we really have to think about diseases that people live with. They live with, for long periods of time, many even the rest of their lives – with their MPN. So, again, I try to frame it for folks. For many, it’s really about managing a chronic condition. And being a chronic condition, the things that we do in terms of our lifestyle are very important, both in terms of what we eat, how active we are, how well we sleep. There are many key parts that are related, without question.

Andrew Schorr:

Okay. I gotta ask one question off the top. Julie referred to it, and I wonder about it, too. So, I’ve been taking Ruxolitinib for five years. Julia, for four, I think you said, Julia.

Julie Lanford:

Yes.

Andrew Schorr:

And so, what I wonder about, Ruben, is there anything about that medicine that some of us take, some people for PD as well, that lends to weight gain, scientifically?

Dr. Ruben Mesa:

It’s difficult to know. Clearly, people gain weight, at least on average, to some degree, with taking Ruxolitinib. Now, part of that reason for weight gain is that an MPN causes weight loss overall. And MPNs in general burn more calories than if you don’t have an MPN. The activity in the bone marrow, all those cells being produced, and turning over that burns more calories than it does otherwise. So, part of the weight gain may be turning off that extra calorie burn that the MPN caused. So, part may be, again, you’ve kind of adjusted your diet, etc. In the past, you were able to get away with eating more. And then if the disease is quieter, you gain some weight. Now, I’d say even though that’s part of it, it does seem that people do gain a little bit more weight than even that with the Ruxolitinib.

And it may well have to do in part with some of the secondary effects of the Ruxolitinib. Ruxolitinib inhibits JAK2. That’s one of the key reasons it was tested in MPNs. And with that, helps to shrink the spleen, helps people feel better. Maybe help even avoid progression of the disease or decrease that likelihood of progression. But it has an impact on a whole bunch of different proteins that circulate in the blood that we call cytokines. Cytokines can be involved with inflammation, but they may be involved with other parts that kind of control how things are working in the body. And it may be blocking of some of those cytokines that may account for a little bit of that change in weight.

Andrew Schorr:

Hm. Okay. And related to the other medicines that we take, some people take interferon, some people take hydroxurea, depending upon where they are – maybe just aspirin, depending on where they are with an MPN.

Are there other common things that affect weight related to any of those medicines?

Dr. Ruben Mesa:

It’s a good question. In general, the weight gain has been much more specific to the JAK inhibitors. I can’t say it’s specific to Ruxolitinib, but it really is an effect with JAK inhibitors. Most of those other medicines, hydroxyurea or interferon, don’t have a big impact on weight in terms of gain. Whether that’s in people with myelofibrosis who have lost weight related to the disease, even if they’re on hydroxyurea, they don’t tend to gain some of that weight back. So, myelofibrosis, we do view that some of the weight gain might be beneficial, because some of that weight loss in myelofibrosis is not just fat. It can be muscle. But again, there may be some part that is an extra effect of weight gain from the impact of the drug.

Andrew Schorr:

Okay. Julie Lanford, so let’s talk about managing weight. So, I’ve been – and Julia mentioned it earlier. I mean, I’ve been – no more cookies for me. And I love chocolate chip cookies. So, I’ve had to make changes. How do you coach people through changes, if, let’s say, maybe there’s something related to inhibiting whatever in their body, we have to make changes.

Julie Lanford:

Yeah. So, I will say, I don’t actually keep a scale in my office because I think that a lot of times, you can get kind of distracted on the number. You do know, though – I find many patients know by how their clothes fit, by how they feel. And I think what’s important also is what type of weight is it? Is it muscle weight? Muscle weight’s good, right? Or is it more excess fat? And so, I think balancing those things and really keying in on what are the behaviors that we want you to have, as opposed to what the number on the scale, per se.

But are you able to be physically active that helps maintain muscle mass, and are you choosing those really healthy foods for you? Like Julia was saying, lots of fruits and vegetables, which are really important, not just for weight maintenance, but for overall feeling well and helping to support your immune system, and just overall good health.

Andrew Schorr:

Hm. And so, with this belly that I’ve developed, I had to make a change. I used to have a toasted bagel every morning, Julie. I’m not doing that now. And I put chocolate syrup in this latte machine thing. No more of that. I mean, these are things I’ve had to give up. But I’m having jelly with no sugar in it on a whole wheat waffle, and I’m eating a banana. Am I doing okay doing that?

Julie Lanford:

Yeah. I think – and sometimes, we discount the little things. But I think the little things are sometimes – they make the biggest difference. Because if they are things that you do on a daily basis, and you make a change, it’s gonna have a big impact. Now, you’re talking about your cookies. If you just had a cookie or two once a week, it’s not that big of a deal. But if you were having a cookie after lunch every single day –

Andrew Schorr:

I was.

Julie Lanford:

Then changing that habit – okay. Well then, approved. You can cut back on that. It’s a good choice, right? We don’t want you to completely eliminate it. But really keying in on what are you regular habits, I think, is the most important place to start. And I always encourage people to really pay attention to what they have on their plate, what are the ratios of food that’s on their plate, so that they are getting enough of the nourishing nutrients. And sometimes that helps to, when you make those changes away from the less healthy things; you don’t notice it as much when you’re focused on including more of the healthy things.

Andrew Schorr:

Well, I just want to make one comment. We lived in Europe, some people know, for three years. And the first thing that hit us when we came back to the U.S. is the much bigger portions. And there you are, Ruben – you’re in Texas. Texas-sized food. Or even in California. My mother used to say, “Clean everything on your plate,” but I’m rethinking that, so. Julia Olff, I want to go back to you. So, related to – so, what kind of fruit are you eating? What change have you made? You said fruits and vegetables and organic stuff, too.

Julia Olff:

Well, I have a question in relationship to the conversation that we just had that I wanted to come back to. But I think because of Weight Watchers, my awareness of both weight and nutritional value of food has just heightened. So, one of my big questions in relationship to myelofibrosis that I have tried to adjust but haven’t eliminated – I’m a foodie. I live for food. To me, life – I’m not sure I want another year of life if I can’t have a cookie.

And so, I’ve tried to reduce the amount of fat I take in. And I think I have a lot of questions about salt, sugar, and fat as it relates to having a myeloproliferative neoplasm, being at risk for bleeding, blood clots, etc. But I would say, like you, I have a more structured – my meals are more intentional. So, like you, I have a bowl of fruit for breakfast every single day, and then I try to have something that’s – if I’m going to have a carbohydrate, I try to make it a better carbohydrate. I make use of hardboiled eggs a lot, so I get a little protein, and try to have greens at dinner every night. And a few of them – as a matter of fact, my husband said to me the other week, “Sure, make me a plate.” He was on his way home.

And he came home, and he looked at his plate, and he said, “That’s such a big plate of food.” I said, “Look at the balance. Half of it is vegetables. It’s really not so – it’s not like I’ve stuffed you.” “Oh, okay.”

Andrew Schorr:

So, Ruben, are there some things that in the clinic, you warn people to stay away from? Do you have some general advice, or certain foods, or if somebody’s worried about sludgy blood, where they’re at risk of a stroke, that certain kind of foods or salts or whatever that you warn people about?

Dr. Ruben Mesa:

Well, when it comes to diet and MPNs, I mean, I think there are several levels. And one, let’s say, the general U.S. diet. People kind of eat whatever they want. And that’s probably not healthy for anyone. High in salt, high in fat. It’s a risk for us all in terms of cardiovascular disease, etc. And when you have an MPN, all of those standard risks with cholesterol and sugar and high blood pressure, they’re even a greater concern with MPNS, without question.

But that’s kind of diet one. Diet two, and we can definitely dig into this, regards just trying to eat a healthier diet. And that has different values, whether it’s straight weight loss, or a just a general healthier diet, I think, of which there’s a lot of discussion as to a lot of variations within there. But even just the effort of trying to eat healthier, both in terms of quantity and what you’re eating, has an impact. And there’s finally, the third group, really kind of subspecialized diets, of which I think there is great discussion, but I don’t think that there’s near conformity of should it be gluten-free? Should it be high in protein? Should it be low in protein? Should it be paleo? Should it be this? Should it be that? I think that is more mixed.

But I think for MPN patients, the most particular thing is at least trying to not be in that first group of just kind of the general U.S. just kind of eat food as it comes, fried, salted, really without regard to diet. So, even if MPN patients just followed the diet that we’re all supposed to be following, they probably are in dramatically better shape than just if they’re eating just a general U.S. diet.

Andrew Schorr:

Okay. I want to ask you a couple of things about exercise. So, some people with high blood counts worry that they are certainly at risk of stroke. Should that, during that time, limit the amount of exercise they do for fear that the stuff pumping ever faster through their body is gonna end up with a big blood clot somewhere?

Dr. Ruben Mesa:

Sure. No, that’s a very good question. One, overall, exercise for MPN patients is a very good thing. But clearly, it should be done with kind of the awareness of their physicians. And that in periods of time where the disease is not stable – the counts are too high and uncontrolled, there’s just been an event such as a blood clot or bleeding, clearly there might be times where exercise is not appropriate until things are more balanced and in control. But I’d say once things are balanced and in control, and as long as your healthcare team is aware, appropriate exercise is helpful and important. I think, like any approach to healthy exercise, it’s about gradually working yourself into a specific exercise program. With an MPN, it’s probably not good to do what happens on January 2nd every year, where everyone has a New Years resolution.

And they go from, okay, I’m not exercising at all, to I’m gonna go to Lifetime, and I’m gonna exercise an hour and a half on January 2nd, and absolutely dehydrate myself and exhaust myself, so by January 4th, I’ve quit because I pulled a muscle and I feel terrible. So, it’s clearly about kind of working yourself up to an appropriate level of exercise, in combination with what your doctor feels is appropriate and healthy for you, both in terms of your overall health, but also in terms of where you stand with your MPN.

Andrew Schorr:

Mm-hmm. So, Julie, you’re nodding your head. How have you carried on with exercise? Walking the dog, but what other kinds of things?

Julie Lanford:

Well, I wanted to add, as I’m listening to Dr. Mesa, that pacing is so important. Because I find it catches up with me. I could sleep, on average night, nine, ten hours, and I have to push myself out of bed in the morning.

 So, yesterday, I had an evening meeting. I took a long walk. And in the moment, I’m okay, but by the evening, I start to feel achy. I need to put my feet up. The bone pain in my hips starts to kick in. So, there’s that balance of trying to get out as much as possible. So, for me, it’s taking advantage of the sun outside my window. And I’m already thinking, as soon as we’re done with this call, I’m gonna take another short walk. But it’s also trying to balance it, because too much activity when you have constant fatigue just catches up with you. And I find I end up having those acute bouts of illness when I’ve done too much for a sustained – like for a couple of months.

Dr. Ruben Mesa:

If I might just add one additional thing. That pacing thing, I think, is so important.

As I told you, I’ve had many patients over the years who are very Type A. Some of them will be on this webinar as we speak.

Julie Lanford:

Yup.

Dr. Ruben Mesa:

And they’re very hard on themselves because they remember, well, before my MPN, I was able to exercise this amount, and beat themselves up because they just don’t have the same stamina that they did before. And it’s okay. It’s okay to realize that the new normal does not necessarily mean that you have 100 percent of the capacity that you had before in terms of your exercise capability, and that even though it’s modified, or less, or adjusted accordingly, it’s still great that you’re doing it.

Andrew Schorr:

Right. I have a story about that I’ll just share. So, as we do this program, it’s just after Thanksgiving. So, there was a Turkey Trot, as there were in many places around the country, in Balboa Park on the north side of LA.

My son, Ari, won it. He’s a really fast marathoner. But Esther and I ran it, and Esther and I were running together slowly. And I found I was huffing and puffing, and I’ve run eight marathons, many years ago. And I just said, “You know, I just want to finish.” And Esther went ahead. She did really well. Congratulations, Esther. And then my son who ran the race came back and ran the last mile with me. So, it was a 5k, so a little over three miles. I felt great that I did it. I felt disappointed that I couldn’t do what I used to. But I did it. And I think it’s exactly what you’re saying, Ruben. So, Julie Lanford, are there certain foods or things we can do that will give us more energy, and some things that are just a waste?

Julie Lanford:

So, I would say that we do want to focus on foods. There’s no supplements. Unless you’re deficient in a nutrient, there’s no reason to take pill forms of nutrition.

So, we do want to focus on the foods. And there are certain patterns of eating that we know are particular healthy, and certain patterns that are not so healthy. We’ve talked about the typical American kind of eats a pattern that’s not so healthy. And when it comes to fatigue, I would say similar types of foods as we want for an overall healthy diet. But I think it’s really key that people not wait too long to eat, so that they’re – just like your pacing, everything else in your day, you want to make sure that you are eating regularly throughout the day so that you never get real low on energy in terms of nutrition.

And also, really making sure that you have a good balance of foods at your mealtimes and at your snack times. So, you want to make sure you have a healthy carbohydrate, because that’s what can really give your brain and your muscles energy. You want to make sure you have a good balance of proteins. They can come from plant proteins or animal proteins. But make sure that your meals and snacks have an adequate amount of protein.

And then, of course, some fruits and vegetables and other things. But really getting that balance, and also not going too long between when you eat, so that you can consistently give your body that energy that it needs. Even if it’s smaller amounts at a time, it’s spread out throughout the day regularly.

Andrew Schorr:

So, when I went to summer camp as a kid, they had us eat candy bars if we were low on energy. And we’re talking about carbohydrates. So, kick off a couple of specifics that you would recommend that we should – snacks, for instance.

Julie Lanford:

Yeah. So, probably wouldn’t recommend a candy bar, per se, on a regular basis. But things like peanut butter crackers, if you can buy just good old whole grain crackers and peanut butter and put them on there, that can be easy. Even a peanut butter sandwich is really simple. Peanut butter and banana. People around here eat that. I think it’s delicious. Soups can be easy things that are kept either in the fridge – that’s easy to heat up.

Because that’s the other thing with fatigue. You don’t feel like cooking, so you want to make sure that you have sort of meal-sized portions in your fridge ready to eat. That’s what friends and family can kind of do for you. So, even just small meals. If it’s spaghetti, if it’s a piece of pizza that you put lots of vegetables on. I think fruit is great as a source of healthy carbohydrates. If you had fruit and a cheese stick, or even if you made yourself some sort of healthy smoothie, just something that’s going to give you that balance of nutrients.

Andrew Schorr:

Yeah. You mentioned something, and Julie, I don’t know if you do it. We had started to – I love leftovers. And so, we’ve been trying to make healthy stuff, put it in the fridge where I can grab for lunch. Or this morning, Esther made a big thing of steel-cut oatmeal. And so, now I can have that as part of my breakfast. So, Julie, is that – are we on the right track?

Julie Lanford:

Yeah, that’s great. And something that’s really popular right now is overnight oats. So, you can soak your oats in milk or whatever or whatever you want to use for a liquid, and it’s in a jar, or it’s in a container in the fridge all night, so it gets soft, so it cooks really quickly in the morning in the microwave. So, yeah, I think that’s a great way – there are lots of grains you could use for breakfast cereals, too. Barley is another grain. Quinoa. And essentially, you cook it the same as you would oatmeal. Flavor it the same way, and it just gives it variety if you’re looking for something different.

Andrew Schorr:

Julia, how’s that sound to you?

Julia Olff:

I’m not a big hot cereal fan, so I have two breakfasts that I go back and forth from. One is – I love Cheerios, and I just read how much sugar there was in Honeynut Cheerios, so I’m mixing plain Cheerios now with Honeynut Cheerios, and then I add a lot of fruit to it. Or I do a whole grain muffin with half a hardboiled egg, which makes me miss my dog, because I always gave him the other half of the egg.

Andrew Schorr:

I have a blood count question for you with myelofibrosis. How are your platelets?

Julia Olff:

For me?

Andrew Schorr:

Yeah.

Julia Olff:

They are – since I started Jakafi, they’ve controlled like they have never, ever been, or not in a decade. So, they’re probably between 250 and 300, I would say.

Andrew Schorr:

Oh boy. Okay.

Julia Olff:

Yeah. I’ve got platelets to spare.

Andrew Schorr:

Well, I would take some. So – and Ruben knows this about me. So, my platelets have traditionally been low, and they got as low as a few months ago, 40,000. And now I’ve been doing through treatment, actually, for this other condition I’ve had, chronic lymphocytic leukemia, and they were up to about 100. Ruben, one of the things I was told by my doctors was don’t do contact sports, because my spleen was getting larger, and also, I had low platelets.

So, what about the kind of exercise you do if your platelets are lower? What’s your thought about that?

Dr. Ruben Mesa:

Well, I would say that, barring extremely low platelets, i.e., under 15,000, most routine forms of exercise that are cardiovascular, that are elliptical machines, that are weight-lifting, others sorts of things – all of those sorts of things are fine. I think the sports that one would probably avoid with either of those situations is truly kind of contact teams sports – rugby, football, etc., where there’s very significant contact. Down here in Texas, I certainly have seen people riding the mechanical bull. I’m not sure that’s a good idea for anybody, but those sorts of extreme things. There is a bit of a misperception regarding the spleen and it being fragile with MPNs.

It sometimes makes people a little too fearful of doing exercise. The spleen enlarged with acute illnesses from a virus, most commonly mononucleosis or mono, is an area where the spleen grows very quickly. It’s very fragile. And constantly, you hear about people having their spleens rupture with playing volleyball, or football, or what have you. And in MPNs, that really is much less of a case. It’s not nearly as fragile. And it really – it’s not a concern for rupture with all the sorts of normal routine things one would do as an individual with exercise.

Andrew Schorr:

Okay. So, Julia, have you had any worries about the kind of exercise you would do related to your condition, whether you’re gonna have a stroke, or bleeding, or maybe not bleeding, but other complications?

Julia Olff:

I think right after the TIA, and I can’t remember for how long, but maybe for a few months, I was feeling cautious about movement. And my platelets were not yet under control, so I was dizzy. And then they put me on Plavix as well, so that was sort of making it hard to do a lot physically anyway. Since being on Jakafi, having my counts much more controlled and having more energy from Jakafi, I don’t think I – I’m frankly jealous of other people that can do real exercise. I see people run past my window, joggers, etc. But I don’t feel like I have the energy to do that. So, for me, walking is really – walking and walking up steps are my physical activities. And the trips that my husband and I have taken really involve walking and the occasional swim in places that – you’re in sunny California, so maybe you have a pool. But, you know.

Andrew Schorr:

I have an ocean.

Julia Olff:

Yeah, and an ocean. That’s a lot of – to go into an ocean and deal with the forces of the waves, etc. To me, that would be too exhausting. So, I’m sticking with walking. That’s . . .

Andrew Schorr:

Yeah. Let me make a comment about exercise, just because I’ve been doing it for many years. So, yeah, after the marathons and all that. Esther and I go to the gym every day. And we joined one of these ones that’s open day and night. And we go, whatever our schedule is, and I get on the elliptical, and I do what I can. I watch the news, which maybe is a good thing or a bad thing. But at any rate – and I don’t beat myself up about how I did compared to the day before, or the month before, or whatever. But I just do it. And then sometimes, we run, and then we work in biking. So, that’s what we do.

And I would really urge people, because Julia, wouldn’t you agree, there’s a whole psychological benefit to just exercising or getting out there too?

Julia Olff:

Absolutely. And I know Dr. Mesa will – I’ve heard him talk about this, and I certainly read about, try to keep up to date, just talking about the news, about health information sources that reiterate things like getting yourself out. There’s something about stepping outside, and if you have some sunshine, and feeling that that helps, even when I don’t feel well. So, I feel like I always want to get out and move a little bit. And I just try to pace myself. And Julie was saying earlier, and I was thinking about there’s the physical activity, and there’s the amount of time I stand. I love to cook, so for me, being in the kitchen at 4:00 in the afternoon and making a two-hour recipe is a lot of fun.

But it starts to wear on me. And so, standing is a kind of form of exercise that you forget about.

Andrew Schorr:

Do you have a recipe you think – you enjoy making, and it’s an affirmation of better health for you? Something that you feel –

Julia Olff:

Yes.

Andrew Schorr:

What’s that?

Julia Olff:

I think the roasting vegetables. So, every vegetable tastes better roasted, I think. And I roast just about everything. And it’s so easy, because you can flip the oven onto 400 and go about your business. Once you’ve mixed with vegetables, Brussels sprouts, broccoli, different kinds of earthy potatoes, sweet potatoes, and olive oil. Light on the salt, pepper, garlic. And it’s good stuff, and it’s easy.

Andrew Schorr:

Okay, Julie, I have some questions for you, because again, it’s in my daily life, maybe others.

And if you all out there in online video land have questions, please send them to MPN@patientpower.info, and our producer Jamie’s gonna forward some to me, and we’ll pose them before the end of the hour. So, Julie, we cook some things in a wok, and we cut up vegetables. And but my wife has started us using a little bit of something called ghee, which I think is clarified butter. So, how do you feel about that? Or should we be using some other oil instead?

Julie Lanford:

So, when it comes to fats, we like for people to have more of the unsaturated, sort of heart healthy fats, is what we think of, and less of the saturated animal fats. Less of doesn’t mean none. And so, there’s certainly room. I would say ghee and butter are similar in terms of their saturated fat content, as is coconut oil, which sort of has this health halo right now, but it’s still a saturated fat.

So, what I would tell you is it depends on the recipe. If it requires that you use a solid fat in order for the recipe to work, then I would use it. If you can use olive oil instead, or canola oil, or peanut oil, I would choose those. And so, as long as you’re getting a variety. But if you’re always using butter or coconut oil, or if you are somebody who heard coconut oil was healthy and switched from olive oil to coconut oil, we wouldn’t really recommend that. So, it’s really more about the balance, and also how much of it you use. Now, if people are using it so that they will eat vegetables, I think that it’s still an overall gain, because we want people to eat vegetables. And talking about roasted vegetables, nobody’s gonna eat something if it doesn’t taste good. I don’t care how healthy it is. So, we need for you to figure out ways that make healthy food taste good. And so, we try to balance that when we’re giving those recommendations, but you know.

Andrew Schorr:

Okay. I’m gonna skip back to exercise for a minute, related to sort of mindfulness as well. So, Julia, you told me that you were actually in a yoga study. Is that right?

Julia Olff:

Yes, one that Arizona State and Dr. Mesa’s team was running. I was in a control group, so I didn’t get to initially participate, but they were – and hopefully, Dr. Mesa will share the results, but they were looking at the benefits of yoga for people with MPNs.

Andrew Schorr:

Okay. What about it, Dr. Mesa?

Dr. Ruben Mesa:

So, yoga is something that has been found to be helpful in a variety of diseases. And in particular, it’s been primarily studied in breast cancer. So, we wanted to help to demonstrate really several things as an evolving arc with my colleague Jennifer Huberty that leads kind of this exercise research activity at Arizona State.

So, one, we wanted to prove that yoga can be helpful, that yoga has several components, both physical activity as well as a meditation component. And we wanted it to be something that people could utilize really at their homes. And much of the yoga research done in cancer patients or others has been a bit artificial, with people having to travel into the city to go to a center that wasn’t very feasible. So, we’ve completed two studies and seek funding from the National Cancer Institute for the third. The first study, we developed a series of yoga modules to be done at home, in partnership with an online yoga instruction company called Udaya. And what they do is they develop yoga modules to have people do yoga at home. Well, we taught them about MPNs over a couple day period of time. And they created some modified yoga specific for MPN patients.

So, the first study we had was a feasibility study, which we published in the medical literature, where we showed that in about 30 patients, we found that they could figure out how to use the modules, that they used them, that they could use them safely. But whether there was really feasibility – is it feasible? And in that small group, we were able to show that there was also some benefits. They felt better, they felt better, they slept better, they had improvements in fatigue, etc.

The second study was the study that she just mentioned, that was yoga versus a control, where people were on a waitlist, and then after the period of time, they then could use the modules.

And in that study period comparing the two, in addition to measuring the impact of the yoga, we also were measuring blood levels of different levels of inflammation-related proteins or cytokines in the blood to see what sort of impact, in addition to sleep, fatigue, symptoms was having on the biology of issues of inflammation. And we’ll be presenting next week at the American Society of Hematology some of those results. But what we found is, one, not surprisingly, we think yoga is helpful. And it helped with fatigue. It helped with issues of mood and depression. And I think consistent with what’s being seen in other areas, one of the major benefits of yoga might be enhanced sleep. It is one of those potential benefits of yoga. Two, there are, again, the two components. There’s really an activity part with the poses and things of that nature, and is that better or worse than doing an elliptical machine? I don’t think that’s been studied.

But there’s that part. But then there’s really also a meditative part that includes breathing, balance, etc. So, I think there’s a variety of parts, and we’re working to study these different parts. We’re looking to study, how do we take people who have really not been active before? How do you get started in yoga is a little different than having people that have already been fit in the past, and really look to better understand these things so that we can really move to a place where they can be a resource for MPN patients, but also so that physicians know how to recommend or utilize tools like yoga for appropriate patients.

Andrew Schorr:

Yeah, I can’t wait to hear more about it at the ASH conference that’s coming up. And we’ll be covering it, so we’ll look for that. So, we started getting some questions. This one’s from Susan. In recognizing that there will be some patients who will need a stem cell transplant with myelofibrosis, we might progress to that.

And certainly, I know people like that. Julia, you may too. So, two questions about that, Ruben. One is, is there some physical conditioning you should do if you know you’re gonna be headed for a transplant? And second of all, what about recovery? In other words, will you do better with a transplant if you’re in better shape, and how can exercise be used to help you recover from the transplant?

Dr. Ruben Mesa:

Both are very good questions. Without question, physical activity with transplant is important. And people that go into a transplant stronger are clearly better off. But that clearly needs to be balanced with their physicians. What we clearly wouldn’t want is someone kind of wearing themselves out or trying to tackle too much in terms of exercise before a transplant either. You really want to go in kind of the best shape that you can.

Second, most transplant programs now really do try to, even during the process of transplant, try to maintain people’s strength the best they can. That might include everything from activities that are there in the hospital room or at the hospital. I’ve seen everything from kind of modified elliptical machines that you do while sitting down to other things. Without question, there will be days during the transplant people just don’t feel well enough to do that, and that’s fine. But the more days that people are active, really probably the better off they are. And on the backend, without question, whenever you have a very significant health intervention – I don’t care whether it’s a surgery, clearly a bone marrow transplant, anything that’s very dramatic like that, the process of active recovery, it’s a real process that, again, you’re starting a bit from scratch because you’re set back a bit with clearly going through a process like that.

But active recovery is key. People sometimes think, well, I had this big surgery, and it could be breast cancer. It could be a bone marrow transplant. And they think at the tail end, when they’re done, that they’re just gonna kind of bounce back to be exactly the way they were before when they started. And unfortunately, that’s not the way the body walks. You really have to kind of build that level of fitness back up again.

Andrew Schorr:

Hm. Okay. We’re getting questions about being a vegetarian. Grant wrote in and wonders – and I’ll pose this to you, Dr. Mesa, and also to Julie – Grant wants to know, is there any benefit to being a vegan or vegetarian when you have PV?

Dr. Ruben Mesa:

So, it’s a good question. I’d say, in short, I don’t think that there’s any evidence to suggest that you’re better off being a vegan or a vegetarian versus having a good healthy diet.

Are you better off being a vegan or a vegetarian than kind of a general U.S. fatty, salty, fried diet? Oh, absolutely. But compared to a general diet that has appropriate meat, and fish, and eggs, and other things, I wouldn’t say that there’s necessarily a big difference. Now, with PV, there’s always the issue of iron. When we do phlebotomies, part of the reason phlebotomies help to keep the blood counts controlled, specifically the red blood cells, is by making an individual iron deficient. And medicine sometimes can alleviate that, but it’s making people iron deficient. So, if you eat a lot of iron in your diet, particularly iron supplements, you’re really working at cross-purposes. You’re taking iron out by phlebotomy, but then you’re giving iron back in by a supplement. Doesn’t make a lot of sense. The amount of iron in the normal or a healthy diet is modest enough that we have not recommended the individuals to specifically avoid meat or natural food-based sources of iron.

We’re not trying to build their iron levels up, but nor do they need to have draconian avoidance of meat or iron in their diet. But no iron supplements.

Andrew Schorr:

Okay. And just so we know, Julie, was it spinach? Or what are some of the foods people often eat when they’re trying to boost their iron?

Julie Lanford:

So, the typical foods that we think of as really high iron foods are going to be more animal-based. Clearly, liver is sort of one of the top sources. Not many people eat a lot of that. But even clams, mussels, oysters, cooked beef tend to be the things that people think of. When it comes to the plant sources of foods and iron, they’re just not absorbed as easily. And there’s usually other factors that sort of inhibit the absorption of iron.

So, cooked spinach is usually picked up on as well, because you know what happens when you take a lot of spinach and you cook it, and it’s like down to nothing. Well, you’re eating a lot of spinach when you eat it when it’s cooked. So, those are things that I wouldn’t be particularly concerned about, unless your doctor has said you need to pay attention to your iron sources. What I would say when it comes to vegetarian diets, vegetarians tend to have better health outcomes because of that eating pattern of having more vegetables and plant foods in their diet, which has a lot of great nutrients. I think you can eat a plant-based diet that still includes meat if you want to. You don’t have to. It’s a pretty wide range of what we would consider to be healthy eating. But you would want to make sure that you’re getting labs checked. Plus, the nice thing about going to the doctor all the time is that they do kind of stay on top of your labs, so you would pick up if you’re becoming deficient in something.

For vegans, we focus on B12. It takes a long time to become deficient, but that can also sort of play into anemias and things. So, you would just want to keep an eye on that. I don’t promote a vegan diet, but I think if somebody wants to follow a vegan diet, I’m perfectly happy for them to do that, as long as they’re monitoring their labs.

Andrew Schorr:

So, Dr. Mesa, and well, Julia, I’ll ask you first. Julia, did you make any changes when you were diagnosed with what became known as a cancer? Like in my case, Esther had us getting distilled water at the house. But I mean, did you do anything like that? She had me stop drinking coffee. I don’t mean to blame Esther. We lived in Seattle, where Starbucks came from, but we made challenges. Oh my god, does that have something to do with the cancer.

Julia Olff:

Right. I don’t remember then making any significant changes. I do feel like over time, and the more often I’m hospitalized, the more kind of militant I get about avoiding things that make me sicker, like cigarette smoke. Hate walking down the street and having to suck in someone else’s smoke. But dietarily, I just try to have organic vegetables. We have a filter – we do have a filtered water system in the house. Just try to avoid poisons or toxins as much as possible. You mentioned coffee, though, and I wondered what – there’s more research in general out there about the benefits of coffee. For me, coffee, I consider it to be part of my medication regimen. And I’m barely functional until I have that first cup. I literally come down and have a cup of coffee to shower. And I wonder if there’s – if others feel the same way.

Andrew Schorr:

So, Julie, what about caffeine? And also, could you say something about wine, too? Because beer – so many different things. Drink wine, don’t. Red wine, white wine. This leads to cancer. Who knows?

Julie Lanford:

Yeah. Everything, right? So, when you look at actual data – and I rely a lot on the American Institute for Cancer Research, who reviews every study that’s been done. And so, they come up with great recommendations and very commonsense, so I like that. They have tea. So, a lot of people have heard green tea is really good. So, yes, it is. But they also have coffee on their list. Now, the way you have the coffee – Andrew mentioned earlier, syrup in it – that’s why I tell people, if you go to Starbucks and you get four pumps of syrup in your whole milk with whipped cream on top mocha, that’s a dessert. But if you just brew coffee at home, and you put a little bit – I just use milk for mine – that’s perfectly healthy.

And it does have plant nutrients that are good for you. So, I consider it healthy. If you’re sensitive to caffeine and you know that it keeps you up, or whatever, you can get decaf. Or if you just don’t like coffee, drinking tea can give you great benefits as well. When it comes to alcohol, we do know that alcohol increases risk for cancer. I will say, that’s when you drink it regularly. So, that’s when we see people exceeding what we recommend as moderation. And so, if you don’t know the definition of moderation, I’ll teach you that. One drink a day for women, two drinks a day for men. I know, it seems not fair to us women. But that’s what we would say is moderation, and you don’t get to save those up for the weekend. Just because you’ve missed it all week, you don’t load up on the weekend and expect that to also meet the definition of moderation. But if you’re less than that, we consider it to be fine. Although when they said that red wine was good for the heart, they sort of backed away from that more recently.

 It’s the skin of the red grape that’s really good for you. So, it turns out, you can eat grapes. So, that’s my point on that.

Andrew Schorr:

Good advice. Dr. Mesa, we’ve gotten in a couple of questions I wanted to pose to you. One is from Dave and Karen. It says, does exercising affect blood test levels in any aspect? So, let’s say you were a runner, or biked, or went to the gym or something, on the day you were then gonna come to your clinic for a blood test, would the blood test be accurate or changed based on the exercise you just did?

Dr. Ruben Mesa:

It probably does impact it to a modest degree. Probably not to a significant degree. So, it might slightly increase the white cell count or the platelet count in kind of that immediate post-exercise period. And clearly, if someone were to be dehydrated, that will make the red blood cell count seem a little bit higher as well.

So, it can kind of both concentrate the blood a little bit, if you’re dehydrated, as well as if it’s really significant exercise and leads to any inflammation, might slightly boost up the white cell count or the platelet count. But again, talking modest levels. A 350 platelet count going to 400, not 350 going to 1.2 million. So, modest increases.

Andrew Schorr:

Right. And all the doctors have told me, you all look at the trends.

Dr. Ruben Mesa:

Correct. Correct. Absolutely. And for most regular spurts of going to the gym exercise, probably it’s not even noticeable. But if somebody again did an Iron Man triathlon, you’re gonna notice changes in the blood.

Andrew Schorr:

Okay. Well, here’s a guy who’s pretty busy. Mark writes in. He says, I do an hour and a half every morning, stretches, planks, yoga, and even sun salutations. Sometimes I feel slight strain in my large spleen, but it’s never severe and always goes away.

So, he says, on a one to ten scale, Dr. Mesa, how much am I endangering myself, if at all?

Dr. Ruben Mesa:

You know, probably a two out of ten, from what it sounds like. Again, it may be more muscle strain, and it probably really isn’t injury of the spleen. But again, this particular activity that really causes muscle strain in that area, I would probably just modify the activity. Again, a very enlarged spleen is different anatomy than even we were kind of built to have. It’s much larger than normal. It’s asymmetric, so accommodating your exercise for that is appropriate. I would probably look at modifying the stretches if the stretches are irritating that.

Andrew Schorr:

Mm-hmm. Okay. So, one of the things I’ll just point out to people – and you mentioned it earlier, Dr. Mesa – is have a conversation with your doctor about where you are, how you’re feeling, what medicines you’re taking, what you like to eat.

And there are people who can help – now, Julie, you have a website where people can send in questions to you. What’s that website?

Julie Lanford:

Yeah. It is cancerdietitian.com, and it’s part of our nonprofit, so there’s no fees or anything.

Andrew Schorr:

Okay. Now, that’s very helpful. So, Julia, do you recognize that we with an MPN are sort of a moving target? That whatever is normal or feels good to us may change over time. We have to accept that, but that’s part of our dialogue with our healthcare team as to exercise, diet, medication, what’s right for us at that, point? It’s not static.

Julie Olff:

Absolutely.

Andrew Schorr:

I feel that. And that’s where my dialogue is with my doctor. So, just one last thing. I want to make sure I heard you right, Ruben.

So, contact sports – so, should I worry about biking if my platelets have been lower? That I’m gonna have some accident and I’m gonna bleed to death on the road or something?

Dr. Ruben Mesa:

Well, I would say, with 40,000 platelets, I probably would not do kind of the off-road trail cycling with high likelihood of running into rocks or things like that in Arizona, where it can be a bit treacherous. But if you’re really thinking about more gentle cycling, road cycling, particularly if you – and appropriately – are wearing a helmet, it’s probably fine still at that range. At 40,000 platelets, most individuals, even with fairly significant trauma, will still have the same reasonable clotting as other individuals. One probably could have emergency surgery at that level, barring really extreme trauma.

Andrew Schorr:

Okay. And the reverse is, if you had really high platelets, and you’re worried about stroke and other things like that, you’re still not worried that somebody’s gonna run around the block, and that’s gonna put them over the edge?

Dr. Ruben Mesa:

I think that’s highly unlikely, without question. Again, whether they’re high and they need treatment or don’t need treatment, clearly it’s a discussion between the patient and their physician. But in general, appropriate exercise with adequate hydration, or clearly exercise that people have really evolved into, as opposed to a dramatic change in activity level, is usually quite safe.

Andrew Schorr:

Okay. Well, I’m gonna try to work yoga into what I do. My balance is terrible, but I’m gonna try to do – what is it, downward dog, if I can. And they do it my gym, so I’m gonna try that. And Julie, just as far as diet goes, people can write you.

And again, cancerdietitian.com, right?

Julie Landon:

Yup.

Andrew Schorr:

And I think, again, I mean, it sounds like a broken record, but we talk about the healthy diet, fruits, vegetables, some protein, some meat balance, and not crazy about supplements, right?

Julie Landon:

Right, yeah. Unless there’s a reason that you would need a supplement, I don’t think that the general person just needs to be on one. If you like the idea, a multivitamin that should not break your bank would be fine, and you could even do that every other day, and still, it’d be fine. But it’s not necessary, as far as I’m concerned.

Andrew Schorr:

Well, I want to thank both of you for being with us. So, Julia, as we wrap up, and you’ve been listening as a patient as well and living it, what do you take away from this?

Julia Olff:

I guess I’m thinking about it very personally, that I feel like I’m on the right track. I’m trying to do as much as I can to be well,  and to be well around a disease that we can’t control.

Andrew Schorr:

Right. Well, I have a great – I think, for all of us. I have a good medical team. People like Dr. Mesa, people that may be at your clinic, like Julie, who can help with diet. Social workers as well. And also, you said it earlier, Ruben – accept that normal for you changes, that we do have a condition. I mean, we even refer to people with extreme interventions like a transplant, that you’re in a recovery mode, and you do what you can. And but doing something is a benefit.

I want to thank you all. Dr. Ruben Mesa, I’m gonna see you at ASH coming up. And Ruben, thank you so much for joining us, once again.

Dr. Ruben Mesa:

A great pleasure to be here. Thank you. Great discussion.

Andrew Schorr:

Okay. And Ruben, thanks for your devotion to all of us and to research. We really appreciate it. Julie Lanford with Cancer Services in Winston-Salem, North Carolina, where I spent like 12 years of my life, in North Carolina, thank you so much for being with us, once again.

Julie Lanford:

Thank you for having me. It’s been great.

Andrew Schorr:

And Julia, I’ll see you back in New York City one of these days.

Julie Olff:

All right.

Andrew Schorr:

But I want to wish you all the best. And you and I are on a journey with myelofibrosis now. But every day is special. But we hope we have a lot of them. And enjoy your family and your grandchild. What is her name, Elaina?

Julie Olff:

Elaina. Yes, I’ll see her for the holidays.

Andrew Schorr:

I’m looking for grandchildren, so you can give me pointers. But all the best to you.

Julie Olff:

It’s fun.

Andrew Schorr:

Yeah. Thank you so much.

Julie Olff:

You get to give them back.

Andrew Schorr:

Yeah. Thank you so much for being with us. And I just want to mention to our audience, Dr. Mesa referred to it, the kind of World Series of blood-related conditions is the American Society of Hematology. And there’ll be 25,000-plus people there.

And we’ll be there with our team, getting the latest information and bringing it to you, even some live broadcasting. So, if you are not a member of patient power, go to patientpower.info, sign up for the ASH daily updates. And whatever there is about MPNs, we’re gonna bring it to you. And there will be a replay of this Patient Empowerment Network program coming soon that you can share and go over again. Thank you so much for joining us. We wish everybody the best of health. Go out there and do what exercise that you can. A little more is probably better. And think of yoga, and also that balanced diet. I’m Andrew Schorr in Carlsbad, California, feeling good about things. Remember, knowledge can be the best medicine of all.

Living Well with MPNs – What YOU Can Do to Advance MPN Research

What YOU Can Do to Advance MPN Research

Living Well With MPNs – What YOU Can Do to Advance MPN Research from Patient Empowerment Network on Vimeo.

An audience of MPN patients and their caregivers joined us online or on the phone as experts discussed what patients can do to advance research and to raise awareness for MPNs.


Transcript:

Beth:

It is Blood Cancer Awareness Month so our webinar is what YOU can do to advance MPN research. I’m Beth Probert. I am a polycythemia vera patient and advocate.

I was diagnosed with PV in April, 2016 and I had about 12 months of treatment which included a few phlebotomies and interferon, Pegasys. I reacted very well to Pegasys and I am now in remission. I get my care at the University of Southern California Norris Cancer Research Center in Los Angeles. I’m coming to you live from Oxnard, California, which is just north of Los Angeles on the central coast.

I would like to start off by thanking our Patient Empowerment Network for their support, and the MPN Research Foundation for their continued partnership.

I’d like to welcome our guests today. We’ll start off with Dr. Verstovsek, who is a renowned MPN expert from The University of Texas MD Anderson Cancer Center. Thank you for joining us today, Doctor.

Dr. Verstovsek:

It’s my pleasure. Thank you very much for having me on the program.

Beth:

And I’d also like to introduce you to Lindsey Whyte, from the MPN Research Foundation. Lindsey, thank you for taking the time to join us today.

Lindsey:

Thank you so much for having me. I look forward to enjoying this esteemed panel.

Beth:

Thank you. We have two patient panelists today joining us. Both have been in clinical trials and both run support groups in their area. Our first patient panelist is Nick, and he’s coming to us from central Florida. Thanks for joining us, Nick.

Nick:

Thank you very much, Beth. Appreciate it, glad to be here.

Beth:

Great. And I’d love to introduce Andrea, our other patient panelist. And she’s coming to us today from Dallas, Texas. Thanks for joining us, Andrea.

Andrea:

Hi everybody, it’s great to be here. Thank you.

Beth:

Great. I’d like to start off our program today just getting to know a little bit more about Nick and Andrea. Nick, I’m going to start off with you. You were diagnosed with myelofibrosis in February, 2016. Let’s talk about when you were first diagnosed. What was your first move after diagnosis?

Nick:

Definitely I was quite shocked. I was asymptomatic, and the doctor who presented me with the diagnosis really didn’t give me a whole lot of information; basically a Google printout that said I had one to three years to live. So, I traveled throughout the country, hooked up fortunately with Patient Power and MPN advocacy; went to a seminar in Stanford, outside of San Francisco with a wonderful group of doctors there to really learn about the disease.

Ultimately went to May Clinic, Dr. Tefari; Hutchinson Clinic, Dr. Mesa in Scottsdale, Arizona; and finally spent time with Dr. Pemmaraju who works with Dr. V. at MD Anderson. I felt it was important to try to learn as much as we can about the disease to try to help other people behind us, so I signed up for a trial with azacitidine and Jakafi at the MD Anderson hospital, which was phenomenal. They did a wonderful job but unfortunately my blasts had spiked up and I had to go to transplant, which I did a transplant on January 15 of this year.

Beth:

Wow, you have really been through quite a lot in such a short period of time. We’re definitely going to come back to you and talk about some of those details you gave us more specifically. Thank you.

Nick:

You’re welcome.

Beth:

Andrea, I’d like to go to you, now. You were initially diagnosed with essential thrombocythemia about 19 years ago, and then you were later diagnosed with myelofibrosis about nine years ago. So, you’ve certainly had quite the journey. I’d like to hear a little bit about how you reacted when you were first diagnosed.

Andrea:

Sure. My primary care doctor was really great in seeing that my platelets were rising. And while they weren’t that high, she still sent me to a hematologist just in case; a local person here. He did know about it but wasn’t too versed in the MPN world, and we worked together and I was on anagrelide and a couple of drugs and I was doing great, no problems. My platelets were good; everything was great for ten years. And then, things started to change. I started getting tired. And the first thing he said to me was, I think we ought to send you to MD Anderson.

When I had essential thrombocytosis, I felt fine. Emotionally I was fine because I had no symptoms. But when it started to convert, when things started to change and my lifestyle changed and I got much more tired and of course anemic, that was emotionally difficult. But then I went to see Dr. Kantarjian, and soon Dr. Verstovsek, who started me on different trials, I said I am not going to sit here and die. Because I got the same thing; five to seven years, not from any of the doctors at MD Anderson, let me clarify. But I knew that it was at that point kind of a death sentence, not to be dramatic about it.

But I was not going to sit back and let that happen. So I said, what can we do? And was told let’s start you on a trial. I’ve been on five. Three of them didn’t work. One emotionally almost killed me; it was not fun at all.

But the last two, I guess I could say I was in remission. I never heard the word from Dr. V, but I felt great. My life was going along fine. The last maybe six or eight months, the drug seems to not be working as well and we’re looking for something else, possibly stem cell transplant.

Beth:

You’ve had quite a journey over about 19 years, so I’m guessing you’re really a guru to a lot of us; myself, being newly diagnosed compared to you. And I know that both you and Nick run support groups. And if I can ask you, since we’re talking right now, can you tell me a little bit about your support group and then Nick, I’ll go to you in just a few minutes. Your support group is in the Dallas area. Can you give me a little feedback about it?

Andrea:

Sure. It was actually started by someone, Karen Stern, a good while ago; I don’t remember exactly when. Unfortunately, Karen got very sick very suddenly and is no longer with us.

She had asked when she was ill if I could take it over for her. I said absolutely, I’d be happy to do that. So, we meet quarterly. We have anywhere from 15 to maybe 30 people that come. We talk about what’s new with us, what’s new with our symptoms, what reading we’ve done, how we have learned, what we’ve seen in all the different conferences, and we share a lot of information. We eat, we have a glass of wine, and it’s great fun.

It’s wonderful to be hooked up because as much as I think I try to keep up with the diseases, I learn something from people at our support group. What’s hard is when people don’t come anymore for reasons that they’re sick or other reasons, and that’s tough on the group. But it’s all part of the process, I believe.

We have a lot of communication; we talk to each other. We use Facebook and we learn.

Beth:

Wow, and it sounds like you guys have a really personal group there and happy; that in-person connection sounds wonderful. Thank you. Nick, tell us a little bit about your support group in central Florida.

Nick:

It’s definitely a little looser organization. We have probably an email list of about 15 people. We keep adding just about one person every other month or so. Unfortunately for me, we got the group together and I started just doing the emails, sharing information with people, guiding them to Patient Power, guiding them to MPN. A lot of them are trying to find doctors in smaller towns in Florida where they don’t have access to people like Dr. V, and so trying to steer them to some of the better doctors in the area.

Unfortunately then I was going through a transplant so I was kind of out of pocket. So we’ve not had a chance to physically meet. We are kind of spread out; we have people in Jacksonville, Orlando, Tampa, Miami, and Naples.

So just with my regrouping here after the transplant, we’re hoping to probably in the next month or two have our first face-to-face meeting and get some folks together, probably in Orlando, and try to get the group together. But so far, it’s just been a matter of emails; folks emailing each other back and forth. We do have a lot of it seems like mostly PV patients, and they will share different techniques and just like Andre was sharing, some of the things she’s been through. I definitely feel that being around other people who are in the same boat is so much more powerful because it’s hard sometimes to talk to your family members or friends or people at work because they just don’t get it.

They don’t understand what you’re going through and how scary it is. They can’t really give advice. So we’ve found that the support group has really been – it helps me as much as being a part of it is feeling better about what’s going on. It is kind of sad, too, as Andrea said as you see some of the folks take a turn, and you’ve got to kind of rally everybody together because it is – unfortunately, this group, it’s folks who are sick and they’re all going to have their ups and downs and we have to kind of be there for each other. So, it is one of the tougher parts of being a part of a support group as well; I agree with Andrea.

Beth:

I can definitely imagine. Just hearing from both of you and my own experience being in a support group, whether it’s in person or whether it’s online or through email, they’re just all equally effective and really sometimes the best medicine for us; a certain part of our care. I’d like to shift gears a little bit, and Lindsey I’d like to talk to you a little bit with your expertise in the field. Patients are newly diagnosed and you know, how do you convey to them the importance of educating themselves and their family and their friends? What would your message be?

Lindsey:

The MPN Research Foundation has extensive information on our website, and also when somebody registers through our online system.

And I’m not talking about the registry; just contacts us initially, we send out packets with information and we will customize those packets according to a specific patient’s need. We also do or best to hook people up with local support groups or many times people come to us looking for a doctor or a specialist, and we’ll point them in the direction of online resources or others who may be able to help them locally. We have lots of resources available to patients through our organization, and also on our website and to the extent that we can help with a specific question, then we usually try and point someone in the direction of someone else who can.

Beth:

I have to say that that’s exactly what I did. I found your website when I was newly diagnosed and I registered. I got my packet. I was so excited, it had a lot of great information for me. I also got some wrist bands, and I just felt connected.

It was one of the first organizations I found and it just really gave me a sense of really being connected. So, Dr. Verstovsek, I would like to talk to you a little bit about how do you advise your new patients about identifying trustworthy info as far as… we could all go on the internet and go willy-nilly. I was convinced I was dying after two minutes on the internet. But you must get a lot of that. You must get patients asking you what do I do, how do I get information; how do you guide them?

Dr. Verstovsek:

Just towards my endorsement of what we have discussed so far in terms of education and the patients’ engagement, I have seen some of you in my own clinic and you know very well that to every new patient, because this is a chronic disease or diseases, the patients have to be engaged.

And I always endorse them to become a partner in what we are trying to do together to control the disease and eliminate the problems, and make people enjoy life fully for as long as possible with a good control in signs and symptoms. And therefore, engagement and partnership with your doctor and self education through support groups, through symposia, through pamphlets through web is increasingly important. Because the decision-maker is the patient, after all. The doctors are here to support.

And if they can partner together throughout their lives and become good friends, and I always seem to joke about it; we become good friends for the rest of the time. We actually do, and we engage together and we try to educate each other. I learn from the patients, patients learn from me and we go through life together. And so an educated patient is the one who is the best patient because we can participate together. And the sources are increasingly available to all of us.

What we are doing her today, Patient Power on the web, MPN Research Foundation through the web, through symposia, through pamphletsthrough educational material, participating in patient symposia through educational foundations; those are also available apart from MPN Foundation. And then going to the academic centers and their websites; MD Anderson, Mayo Clinic, University of New York City. There are a number of very well established academic centers that have very nice academically-driven websites for education of the patients.

It’s not necessarily to engage at the professional level where the doctors would go and educate themselves about these rare conditions, but also the patient side of the academic sites are very well informative for the patients. This is where you get up-to-date information from very well established professionals that are engaging in education of the patients.

Plus, what you have described, Nick and Andrea, engagement at the personal patient level; support groups aerospace increasingly important for the understanding of the complexities that we are facing and understanding the diseases, and understanding the therapies and the different outcomes. Look at yourselves in this panel. We have a patient, Beth, who is an example of an extraordinarily response to a therapy in complete remission.

Nick had a progressive disease, ended up having a transplant; and Andrea has lived so many years with the condition and went through the different therapies with different outcomes and is living now way more than what her first doctor said about myelofibrosis; nine years and going very well. So, people are different. Things are improving markedly and we need to work together, and education is the primary source of that effort.

Beth:

That is fabulous. I could really see how your really personal approach to caring and educating your patients really allays their fears. I wore those shoes where I was scared, and I really admire the way that you help your patients understand what is out there for them and to see the positive approach. Dr. Verstovsek, why do you feel an MPN specialist is so important when we have patients like Nick and Andrea and myself and others out there, as opposed to just kind of avoiding the specialists? What are the things that we should be really aware of and why we should go to an MPN specialist?

Dr. Verstovsek:

MPN diseases are rare diseases. And in many circles in academia, particularly essential thrombocythemia, polycythemia vera, ET, MPV are considered benign. Yet, we know that patients can change. Andrea has changed. There might be complications that can affect not just the quality of life, but the life duration as well.

Myelofibrosis is certainly much more aggressive and progressive, and can shorten life a lot but is the rarest of the free. So, myelofibrosis being so rare, people in a community setting, in smaller academic centers don’t have much experience. ET and PV, so-called benign conditions but not to me so benign, there is a need for education not just at the patient level but also at the level of physicians. There is much effort to educate professionals about the new developments in diagnosis, in therapy, and in prognosis of these conditions.

And therefore, a second opinion is always good to get. Wherever you are, even if you come to me as a first doctor, I encourage people, patients who come to me as a first doctor to seek a second opinion if it’s necessary to fulfill that educational potential that professionals can give so the patient is fully aware of what’s happening, and to live with that condition for the duration of time that there is.

The professional impact on the patient’s life is enormous because these are conditions that people live with. And therefore, proper indication and seeking a second opinion, and perhaps visiting an MPN specialist is highly encouraged

Beth:

Doctor, how do you coordinate care from afar? If it’s just not geographically… someone doesn’t have an MPN specialist near them, can you tell us a little bit about how you would coordinate that?

Dr. Verstovsek:

This is an excellent question because the specialists are around the United States and as you aid, not everybody can be local or come very often. And therefore, communication with the local doctor and education through the email or the phone is vital. We try to form a team. Patients at my center know that we are not here just to provide one-time opinion; it is continuous engagement with the local doctor.

And the patients are always encouraged to come back at the frequency that can be absorbed by their social and financial status; every six months, every 12 months if possible with more benign conditions. Or, with more aggressive conditions more often; engage in what they do, developing new medications or advising on the proper use of standard therapies. Because it is not easy even for a patient in a community setting to apply standard medications properly because of the rarity of these conditions, particularly myelofibrosis.

So, a team effort with the specialist, with the local doctor, and the third most important is the patient themselves; fully engaged in these three triangular here will provide the most benefit for the patient’s outcome overall. And that can be done as necessary. But one thing is that sometimes I should say expectations from the MPN specialist perhaps are overshadowing what actually the expert may do.

For example, myself, I am not able to monitor patients from a distance; it’s not advisable. Therefore, the local doctor must be part of the team with the interaction through the ways that I described for the best outcome of the patients. But not one doctor that can be supervising patients wherever they are.

Beth:

And that’s wonderful to know that this option is there for them. Because we do hear from patients who are in more remote areas and feel that perhaps are not getting the care for someone that’s really more renowned in their field. So it’s so wonderful to hear about those types of patient’s and how it can really benefit the patients. Thank you.

Lindsey, I’d like to ask you a few questions about the goal of raising awareness. Why is raising awareness essential to move forward, to really move research forward?

Lindsey:

That’s a great question. You know, as most people on the phone are probably already aware, the MPN Research Foundation is very involved in funding research and trying to help direct research for MPNs. One of the things that we really need to try and understand is the course of the disease and how we can help to affect the quickest results for the patients to help them to feel better. I don’t know if that answers your question, but that’s one of the things that we focus the most on, and that’s where our projects are directed.

Beth:

That’s great information. You know, I think people tend to forget that if we are such a rare group of diseases, the MPNs, and if we’re not raising awareness, we’re missing out. And we’re missing out in  moving that research forward.

Nick and Andrea, Andrea I’ll start with you; could you just give me some ideas, maybe? Has your support group or you, yourself personally, thought of different ways to get involved to raise awareness?

Andrea:

Well, one of the things we’re trying to do is invite speakers to the meeting. And my hematologist came once, and it was on a Sunday; I thought that was a very noble thing to do. People got great information. No holds barred, he answered questions and it was great. And hopefully we’re going to have someone from Cancer Care so that questions can arise, and then people can go and ask about them and check. How to raise awareness, I think it’s talking to people, I think it’s participating in maybe the LISTSERVs. It’s participating in things like this where they tune in and hear things and ask their questions.

I think it’s part of it on Facebook, encouraging people to go to meetings and to get more educated.

Beth:

Those are all great ideas. Nick, do you have a few ways or things that you’ve done either individually or through your support group that you try to raise awareness?

Nick:

Yes. I was kind of fortunate in that several years ago I was president of a company headquartered here in Tampa called Beef ‘O’ Brady’sWe had 270 sports pubs, kind of like a Buffalo Wild Wings. And then more recently I have a company called Little Greek, and we have 33 restaurants. We have five or six in Dallas and 17 here in Tampa. So fortunately the local media kind of got behind me and they did several articles about my disease, talking about myelofibrosis, trying to help us find – we signed up 700 Be the Match folks. Because I was trying to talk about the importance of getting people in this Be the Match database.

And then my wife did a blog going through the transplant process; she had over 10,000 hits and we actually set it up where it’s in book form where you can order it on Amazon and we’ve given it out to folks as well. So, we’ve definitely been pretty proactive here in the Tampa market with the Tampa Bay Times and Tampa Bay Business Journal and the Gulf Course Business Journal. They’ve been very nice about covering my experience and some of the ups and downs, and going into transplant when you don’t know if you’re going to make it, and how do you set up your business.

So we’ve been pretty fortunate. But it is such a rare disease, I have to explain myelofibrosis. They say what’s that, and I say it’s kind of like leukemia but red blood cells. I know my primary doctor said Nick, in 17 years you’re my only myelofibrosis patient and probably before I retire, you’ll still be my only myelofibrosis patient.

Fortunately, people like Dr. V. out there, his videos were so helpful for me early on, and I really do appreciate the senior physicians in this field. They’ve been so gracious with their time to get out there and help educate us. It really blew me away to have access to those types of materials because there’s so many questions.

I really appreciate him even being on here today; it’s so impressive.

Beth:

Great. Wow, Nick, that’s so encouraging to hear about how you and your wife got the community involved and really brought awareness to such a rare disease. Dr. Verstovsek, how broadly within the oncology community, how aware are they of MPNs? There seems to be other cancers and such that have a lot more attention.

Dr. Verstovsek:

Over the last ten years, much has been done on the awareness of these conditions for the physicians themselves. You may know that for example, one of the major meetings, the professional meetings in the United States is American Society of Hematology meeting that is always done at the beginning of December. And I tell you that ten years ago, there was no session on myeloproliferative neoplasms or MPN.

[00:49:00]                  

No educational sessions, no scientific sessions of significance of all; it was neglected completely. We changed the field completely from 2004 on by the discovery about what is problematic, the JAK-Stat pathway abnormalities, these biological abnormalities in all the patients and all the associated genetic abnormalities that leads to progressive disease. We changed the understanding of the disease. That led to development of new medications, developing new prognosis coding systems, improvements in our ability to manage patients. And now, I should be proud probably that it is not as fast as we would like, the MPN is at the same level as any other more serious conditions like acute myeloid leukemia. We have full fledged scientific sessions on MPN on its own, presentations, oral presentations.

I would say that people in the field, because this is relatively new, still, are hungry for information; the education sessions are full. Much more can be done on education of the physicians. So it is coming there, but it is a slow process, educational process on the patient side is in parallel being done to educational professionals.

Beth:

Wow, that is great. And it’s encouraging to know that the MPNs are getting the attention that they should be getting. Lindsey, I wanted to ask you, do you feel that focus on MPNs are being overlooked because of more prominent advocacy with these other conditions?

Lindsey:

I would say that it’s similar to what Dr. Verstovsek was saying. I’ve personally been at the American Society of Hematology meeting myself, and I’ve been at a lot of other – participated in some other meetings recently.

I’ve started to look more – obviously, given what I’m doing now with the registry project in the media, there’s definitely a lot more focus on MPNs than there probably once was. I also participate in some activities in Washington, D.C. having to do with the rare disease organizations there; there’s a few different rare disease organizations. So the MPN Research Foundation is trying to participate in activities like that to make sure there’s continued focus on MPNs there.

But you know, I think that we can never do enough, really, when it comes to a rare disease. We all have to play our part and keep it at the forefront of people’s radar because until there are better therapies out there, we can never stop.

Beth:

Wow, and that is great to know that the MPN Foundation is really getting more focus with the rare diseases and the work you’re doing in Washington. In fact now, I’d like to show a quick little video. There are a lot of people in the MPN community around the world that support MPN awareness and they’re doing great things. This short video will give you an idea of who those people are out there. So, I hope you enjoy this video for a few moments.

Beth:

Alright, so did you guys catch Nick in there? We’re hoping to hear from now we’re going to run out of slides because there are so many folks out in the community doing such great things, and that was real cool, Nick. Lindsey, I’m dying to ask you this question. myMPN Registry; we are all really super excited about this from the MPN Research Foundation. Can you talk a little bit and tell us what it is and what the goal is?

Lindsey:

Sure, I’d love to, thank you. So, as we’ve talked about on this webinar, there’s a lot of different experiences by each patient with an MPN.

Some people live with it for a long time, some people get a diagnosis that comes out of nowhere and it advances quickly. There’s lots of different paths that can be followed by an MPN patient. And one of the things that we’re most focused on, as I’ve stated previously, is to try and get some therapies that can help the patients regardless of where they are on that pathway. We said to ourselves, how can we better understand the pathway itself because each person’s experience is different.

People have different symptoms, they have… some of their symptoms are in their blood counts, some symptoms are more depression or they may have itching, they may have some other brain fogginess; different things. Everyone has different combinations.

So we wanted to understand that, and what we decided to do was put together what’s called myMPN. It’s a registry for patients to go in and share their experience. And in doing so, they can help to change the prognosis of all patients. Actually in the slides that you ran, there was a quote from Helen Keller and it talked about it’s not just one major mover or shaker; it’s actually everybody in the process along the way. That really encapsulates what is going on with myMPN.

We need patients each to go in and share their individual experience. We would love it if they would not do it just once but many times; keep coming back to the registry. So, the registry is structured so that we gather the information in a primary survey that has some history, background about an individual, their diagnosis, a little bit about their history and treatment, the drugs or therapies that they’re using.

But then there are additional surveys that we invite the patients to come back and fill out again and again, which collect information about what’s changing. So, there might be an event that has affected their health. Maybe they had some sort of a thrombosis, or a pregnancy, or it could be something related to their MPN or something unrelated. Then there’s another third survey called How Do You Feel Today, and that’s where we really want to understand the patient’s whole experience with the disease; how did they feel today versus how will they feel next week. Are they getting sleep, are they eating? Are they having a lot of fatigue, are they itching?

The idea is that for the many patients that we gather this information over a long period of time, then that will start to help us to understand the diseases better and over time, hopefully we can figure out if there are triggers to the disease advancing from one stage to another; trying to help to put together some of the pieces of the puzzle that currently aren’t available to researchers in the labs and in the hospitals.

We’re hoping to augment the research that’s already going on by helping to provide those researchers and doctors with day-to-day experiences of patients. So it’s a really great way to involve the patients directly in the direction that research is having.

Beth:

I think this is fabulous. Is this up and running now? Is it accessible?

Lindsey:

Yes. We launched actually earlier this month in connection with Blood Cancer Awareness Month. I’m humbled by the response; it’s just been fantastic to see how many people have really been involved and engaged and coming back to the registry.

Beth:

That is wonderful. How does someone get involved? How do they sign onto this?

Lindsey:

We have a dedicated website for the registry; it’s www.mympn.org. And on that web page they will see the link through to begin the registry process. The first thing that a user would do is set up their privacy settings. We liked the platform for this particular registry setup because it enables each patient to customize their privacy settings.

Some patients are very comfortable sharing the information about their health history and background, helping to contribute that information toward the scientific process. Some people just want to record it for their own future reference, and that’s perfectly fine.

Either way, we’re just glad that people are getting engaged. The system, myMPN system, actually does have that flexibility so the patients can determine what information, if any, they’d like to share with the researchers and the research process. That’s the first step; you set up your profile for your privacy settings, and then as I said, you start to go into the survey where you talk about your history with the disease. And then we encourage you to come back and fill out the other surveys on an ongoing basis.

Beth:

Great. Well, I signed up so I’m really excited that I can be a part. Dr. Verstovsek, I wanted to ask you, you’re on the steering committee of myMPN, one of the doctor’s registry.

What kind of impact do you think this is going to have for you and the way you practice medicine and make decisions and deal with patients over the next few years?

Dr. Verstovsek:

This is a very significant step forward. Look, what we know about the current conditions, like for example polycythemia vera. Let’s talk about polycythemia vera. You have in the literature assessment of the outcome of the patients that were referred to tertiary centers in the consultations. So they would come to Mayo Clinic, or to MD Anderson, or Moffitt or any other large academic centers. And there would be possibly let’s say 500 patients with polycythemia vera that were seen over the last 20 years.

Academicians would analyze them from the time they arrived and what happened with them with therapies, and you would come up with some knowledge. But that is such a small, small part of the larger community of polycythemia vera patients. There are possibly about 100-150,000 polycythemia vera patients living with the condition here in the United States.

And what does it mean to analyze the outcome of the 500 patients that were referred to you in academic centers? It means a lot, but not too much in the larger picture. So if we have a way of having a registry where multiple, multiple people, patients from – many patients from a larger group of patients, not just those that are seen in academic centers, can participate. And we can learn how they were diagnosed in a community setting; what did the local doctor do?

What symptoms did they acquire during their lives? What therapies did they receive, and why and what happened with those therapies? Any complications with the thrombosis? Any complications through the pregnancy? Those are the issues that are mentioned already. What led them to be referred to academic centers?

We can enlarge our knowledge, better our knowledge about the disease conditions; time to diagnosis, time to progression, management in community setting and the relevant new interventions and new ways of assessing needs of the patients, and understanding life with PV, or life with ET, or life with myelofibrosis on a larger scale and see where to intervene and how in the future.

Beth:

And in some ways, this really seems to overlap personalized medicine. We’re now not looking at the one scenario for PV or myelofibrosis or ET. We are looking at hopefully a huge group of MPN patients and putting those pieces in the puzzle, as we said Lindsey.

Dr. Verstovsek:

And let me add – this is really good. This is an excellent comment. Because we these days think a lot about the genetic complexity. There are patients with myelofibrosis or any other conditions that differ based on genetics, as I mentioned earlier on. But there are patients with myelofibrosis that present with anemia only, patients that prevent with very big spleen and poor quality of life.

There are different ways of people progressing or presenting with a condition not only based on genetics. What is the experience of patients that have only low blood cell count versus those that have a very big spleen; how did they fare? It’s clinical assessment and quality of life assessment and blood cell count assessment. We don’t really need to engage in extraordinary tools to learn. Genetic is one part of it, but it is much more we can learn from our on practice on the larger scale.

Beth:

Dr. Verstovsek, is there really a difference between this and an observational study?

Dr. Verstovsek:

There is some difference in that observational studies are usually much more focused in a shorter time period in a selective group of patients, in academic centers usually, with much more scrutiny of the detail. So, if you have an observational study in polycythemia vera, since we’re talking about polycythemia vera, there is such a study; it’s called the REVEAL study. There is also observational study for patients with essential thrombocythemia and early stage myelofibrosis called the MOSS Study.

So, a limited number of patients with very dedicated focus to see patients periodically, collect all the data of what happens to them all the time, because they are followed by clinicians and the researchers and nurses; this is a full fledged clinical study. Without intervention, just to see what happens with them; what symptoms develop, what complications they may have with other medical problems, what happens when they’re hospitalized and why, what the reasons are for intervention for their disease.

What is the effect on their work, ability to communicate with the family, engagement in social encounters. So it’s much more focused, perhaps more in detail and in a short period of time. But it does very well complement the registry, which is much broader and for a much longer period of time. So, I encourage patients to participate in both efforts.

There is complementation between the two, and certainly encouragement from the academic and local doctors to learn from these efforts.

Beth:

Doctor, what is the criteria to participate in an observational study?

Dr. Verstovsek:

Unlike the registry where really we are trying to include everybody who has the disease at different stages to see what is happening with them, registries are usually focused on the patients like the Moss Study; I mentioned it’s for patients who have essential thrombocythemia that requires therapy; and for patients with myelofibrosis that do not require therapy. So it’s a concerted effort to understand much better in detail particular groups of the patients. So there is eligibility criteria for participation in some of these observational studies, unlike the registry where we really like to have everybody.

Beth:

Alright. And of course now this leads me to clinical trial. We hear a lot about clinical trials. Could you briefly describe for us the difference between a clinical trial and an observational study?

Dr. Verstovsek:

Absolutely. And see, while I was giving an example of an historical analysis of patients in academic centers that leads to information how to manage patients and what to do about them. But these are the patients who are referred to academic centers, usually – most of the time – because they are not doing well and there is a need for intervention. And most of the time, we talk about treating patients that need to have something corrected.

They suffer from anemia, they suffer from a blood clot and this is where we intervene, and this is where most of the work in academia is focused on. This is where we do clinical studies. Clinical studies in MPN, most of the time and in the United States in particular, are focused on correcting something that is wrong; improving quality of life, decreasing the spleen, improving the anemia in ET or PV.

We would like to treat people for what they suffer from; high platelets, high red blood cell count, big spleen, symptoms. Intervention studies in myelofibrosis for example are needed as we try to prevent another clot in patients with ET and PV. So we are moving from interventional studies to prevention studies. And to get proper assessment of those patients in need, observational studies are needed to learn about the experiences.

A registry is needed to learn about a wide spectrum of patient experiences for us to identify groups that would, for example, benefit from prevention rather than waiting for them to suffer and then prescribe something to correct it. So prevention studies will be major developments, in my view, from observational studies to see where we need to intervene once we observe.

Beth:

Very interesting. I had not even heard of that. That is fabulous.

Both Nick and Andrea, you have both participated in trials. And Andrea, I would like to go to you first. You’ve been in several clinical trials. What was your journey, and what was beneficial in participating in those?

Andrea:

Well, frankly the whole point of my participation was not only to feel better and maybe arrest the disease to an extent, but I felt since it was such a rare disease I had an obligation to try to advance research by using me as a live guinea pig. Instead of donating my body to science later; let’s try to do something now. Of course I had selfish reasons, as well. What happened with the early studies which were done nine years ago or so, several of them just were very toxic for me, and for different reasons.

But different things happened; a couple landed me in the hospital. But I knew there was something out there, working with Dr. Verstovsek, working with my local hematologist; I knew that if I didn’t try and didn’t do things, that I certainly wasn’t going to get any better. So, when we hit on CYT387, which I bugged Dr. Verstovsek about because I read about it, and I said it sounds right for me; he said yeah, I’m gonna get it, I’m gonna get it.

He finally did. It worked for five years. The company was bought out by another company. I have a similar drug; it doesn’t seemed to have worked as well but for five years I’ve been transfusion independent, which is huge.

While my anemia has not been anywhere near normal, it’s certainly functional and I’ve been great. Now we’re looking for something else. I’m a perseverant person, and the first couple of trials didn’t work but I didn’t die, and I didn’t get any worse. And the fourth and fifth trial did work, so I think I have to encourage people to not give up. We’re all different, and we talk about that in our support group. Everybody is different. We are so individualistic in this disease that we can listen to other people, but we have to really listen to our bodies and ourselves.

So now, it’s that period of kind of treading water; what do we do next? There are some things that Dr. V has mentioned, there are some things that I’ve been reading about that I’m going to quiz on him when I see him next. And so it’s a little discomforting right now because something has to happen.

 But I’m confident and positive that there will be something out there, but if I don’t try, we’ll never know and a patient behind me – we have people in our group who are 20 years old and 30 years old. They’re panic-stricken. So hopefully I can help them, maybe; if I don’t someone else does.

Beth:

You know, Andrea, you’re very inspiring. Me kind of being new to the game, too, it’s very inspirational to hear about your perseverance and your attitude. I love the idea that you’re also there for the younger people in your group to show that this is the journey but it’s working, and there’s hope on the horizon. Nick, if you could tell us a few things, a few thoughts about your journey through your clinical trial and if there was a benefit?

Nick:

Yeah, sure. It’s kind of interesting for me initially when I was diagnosed, the local doctor said well, you’re so lucky; you have Moffitt right here in your backyard. So I went to Moffitt Cancer Center, and they’re very good but the hematologist said basically the same thing that the initial doctor who did the diagnosis; well, you’re a good candidate for transplant, just wait a year, watch and wait a year and then go to transplant and so be it. But you do the research, and transplant is a pretty tough deal.

When I went to Moffitt, basically that’s what the doctor said, is we’ll see you once a month or every other month and sometime next year you’ll go to transplant. I said doctor, I can’t just sit around and wait and just sit back and placidly have this ticking time bomb hanging over me without trying to do something. And like Andrea, I also felt I owed it to the other patients that maybe being part of a trial that we’ll learn something.

I was hoping – my goal was to try to postpone my transplant for several years. But I said being part of the trial, maybe they’ll learn something good or bad that will help other patients as well. And that’s where I was very fortunate to land at MD Anderson with Dr. Pemmaraju.

They set me up on azacitidine and Jakafi. Moffit’s pharmacy doesn’t even carry Jakafi. So, the No. 1 tool in the toolbox for MPN patients, they don’t even have it there. That’s where we did the trial, and I think with the trial the one thing that people need to know, you’re under a much higher level of scrutiny. Dr. Pemmaraju at Moffitt, they’re having me come in every 30 days for blood work, 60 days to visit with the doctor. Pemmaraju, he’s seeing my stuff every week; they’re looking at my numbers. I go fly out there once a month to meet with them.

And so you have an extra layer of coverage. And ultimately, it was Dr. Pemmaraju who said hey, Nick – by the way, CAL-R, JAK2 was my mutation, which also people need to know who’s doing what. But in October, Dr. Pemmaraju noticed my BLAST had spiked from 1 to 5. He said Nick, you’ve got to go for transplant because if it turns into AML, your prognosis really gets a lot worse.

And I’ll always remember the look on his face. He just looked at me and said, time to go. That’s why I think his higher level of watching me gave me that sense because there is some controversy out there as to when to go to transplant. When do you go? Do you wait? Is there a certain number you have to hit?

I felt that his advice, based on all the doctors I had met with, was very right on point and I appreciated their – there’s a great group of folks there, and I certainly think that my success – and I don’t know if Dr. V. agrees, but me being on Jakafi, actually they kept me on it through the transplant; I think that helped me because I’ve had a fairly good transition through the transplant process. And I think it was based on the work that Dr. Pemmaraju did.

Beth:

Great. Nick, you’re very encouraging. Dr. V, since Nick brought that up, how do you feel about that, that he was kept on Jakafi?

Dr. Verstovsek:

I would say that both Andrea and Nick have amazing stories to say and to tell us their experience and to learn, and really inspiring stories. I’m glad that there was a time period to enjoy some good quality of life and control of the disease for Nick. But in this tough disease, myelofibrosis, it can be controlled for a long period of time but it does change as the medications really don’t work forever. And sometimes it is necessary to go to transplant and we treat patients up to the transplant with Jakafi to maintain the benefit that might still be there.

After the transplant it’s not necessary anymore, of course. But that is one of the experiences that people need to understand that there is a potential for medications to control the disease, either through clinical studies and the first option may not work, the second may not work and there are always – and we try to have those here – multiple other options through conventional medications or through investigation medications to help patients. And if the transplant is necessary, we will do it when the time comes and it is a personal decision most of the time.

It’s not really one number; it has to be between the physician and the patient.

Beth:

Absolutely, absolutely. Lindsey, I’d like to ask you the last question, and we do have a few questions from our viewers. We’re talking so much about clinical trials and raising awareness, how do we do that, and how does raising awareness affect the clinical trials? I know like barely anything about clinical trials.

Lindsey:

Sure, that’s a great question. In fact, one of the things that we try to do at the MPN Research Foundation is to let people know about clinical trials that are going on so that to the extent that someone is looking for something better, kind of like Andrea was or has been. Maybe they haven’t been made aware by their own doctor of an ongoing clinical trial.

And by using our social media and our website, etc., we can make people aware of that. I think that’s – it’s a great way for people who are patients but also I think that it’s important for patients to understand the message that Andrea delivered that I think was so eloquent. Which is unfortunately, drugs don’t come onto the market without brave patients like Andrea and Nick who are willing to put themselves out there and take something that is yet to be approved by the FDA. Because the FDA has very specific standards and they scrutinize the trials very carefully. But at the end of the day, we need patients to volunteer for these trials.

I think it’s wonderful when patients do that, and it’s even better when the results are great, obviously. But I think from an educational standpoint, we as an organization and I know others try and help people to understand what their options are, what the process of a trial is. We’ve actually in the past put together graphics to help people understand how trials progress. We actually have been involved ourselves in discussions with the FDA on how trials can be more focused on the patient experience.

So I think that things are definitely going to improve, and hopefully we’ll see more drugs that are available for patients that will provide more relief very soon.

Beth:

That’s very encouraging. I absolutely agree with both of you how people like Nick and Andrea, and could be myself as well one day in the future; we can’t move forward. We don’t want to be stuck and not be able to have those results. I’m going to shift gears a little bit. We’re ready to take a question. Dr. Verstovsek, this question I believe is geared for you, and I’m going to go ahead and read it. Dolf from Holland is watching.

How is research internationally organized? Dolf goes on to say lots of trials with MPN hematologist around the world, and we can find them on clinicaltrials.gov. But is there also some specific research in some countries that’s not registered at that site? Is that something you can address?

Dr. Verstovsek:

That’s a very good question. There is an attempt by clinicaltrials.gov, which is actually the federal site, to collect all the clinical trials that are being conducted not just in MPN, obviously, but in any other condition. And the effort is really significant with the prospect of utilizing that for patients as well to identify the sources, if not only for the physicians. It is really the professional side but the patients can search that as well. Perhaps it’s too cumbersome sometimes to find information, but underlying the attempt is very well received at least in the professional circles.

If there are any other studies in other countries that are not registered, of course it’s a possibility this is the Federal Government of the United States. I am not aware, didn’t really look into that, whether other governments in Europe – and I would say some they do, maintain something similar for their own countries like in Germany or France.

This is, after all, one of the best sources of information, clinicaltrials.gov, for clinical studies.

Beth:

Great, thank you so much. We’re going to take one more question; unfortunately we’re almost out of time. But we have another event coming up October 7, and we will definitely answer many of these questions that have come through tonight. And in fact, Dr. Verstovsek will be on that panel as well, on the upcoming one. I do have another question for you, Dr. V. It’s from Julie. Do you have any tips for patients to educate their primary care provider about MPNs? And she said more specifically, PV.

Dr. Verstovsek:

The information that is available to the patients through the MPN Educational Foundation or through the information that can be gathered from the academic websites for the patients typically is organized very well for anybody to understand it.

I have patients that are engaged with us together, as we said, in that educational effort for all participants to be at the same level. That means not just us in a referral center or patients, but also referring doctors. So the best information to a primary care doctor, and I assume that was what the question was about, the local oncologist; that is delivered by us as experts in MPN and by the patients.

By bringing that information to the attention to a local doctor is valuable. There is rarely any doctor that would not appreciate so much the involvement of the patients on the part of education, and bringing the new information to the doctor. Look, the local hematologists and oncologists, that’s a hero for me.

That doctor, a female or a male, has to take care of not just the PV; it has to take care of patients in brain cancer and kidney cancer and lung cancer; both of the perspective of life and professional commitment in front of you for that particular doctor. That is the doctor that is doing all of this at the same time, and has to catch up. So we have to also realize that it’s really difficult to follow all the updates and all new developments in the field for PV or any other MPN. So, I know that doctors appreciate when the patient is engaged and brings information to them.

Beth:

Excellent advice. Julie, when you asked about their primary care providers as well, I’m sure Dr. V. feels the same way; we can take a look at Andrew Schorr and his wife Esther who created and head up Patient Power. Esther is very vocal about being a very educated care provider.

And through everything we’ve talked about today with myMPN registry or the MPN Research Foundation, or all the things that Dr. Verstovsek brought up about how he educates his patients, the primary care providers definitely should be in that conversation. Those things are all welcome.

Well, we are just about to wrap up. We’ve had a really great discussion here today, and I would like to get some final thoughts before we say goodbye. We are a little pressed for time. Nick, if you can give us a few quick, final thoughts and we’ll just go around after that.

Nick:

Well first, Beth, great job on the hosting. It was very impressive, and glad to be able to participate. And certainly want to thank all the panelists to try to keep moving folks forward. And hopefully some day the people behind us won’t have to worry about the same issues we’re dealing with today. And appreciate Dr. V. taking the time especially, and all the great work that his team is doing, too. So, wish everybody the very best, and thanks, and great job, Beth.

Beth:

Thank you, Nick, and right back at you; it’s been a pleasure having you. Andrea, some final thoughts from you?

Andrea:

Yes, thank you everyone for participating, it’s been great. It’s my first time. I would like to say that one thing I found successful was to print some pamphlets up and to distribute to my doctor and leave them out so people are aware of our meetings. And also, to really encourage people to look very seriously into clinical trials and going to an institution like MD Anderson that specializes in their disease so that they can get the best care and educate themselves the best.

Beth:

Thank you, Andrea. Those are great words of wisdom and we appreciate all of your feedback, having been in this journey for almost 20 years. Lindsey, can you give us a few final thoughts?

Lindsey:

Sure. Thank you very much for including me in this conversation; it’s been wonderful to join Dr. Verstovsek and Andrea and Nick.

I encourage anyone who has not yet visited myMPN to please visit us at www.mympn.org. If you have any concerns or questions, please don’t hesitate to reach out to me. I encourage everyone, like Andrea said, to try and get involved in your care, whether that’s through myMPN, through joining a clinical trial, and certainly just being an advocate for your own health and going to go visit those doctors armed with the information that you can.

Beth:

Thank you. Great words of wisdom. And again, we are very excited about the myMPN registry, so thank you for sharing that today. Dr. Verstovsek, we appreciate you being here. Some final words that you can give to our audience?

Dr. Verstovsek:

I really appreciate you having me on the panel; it was a wonderful experience.

And certainly what we have achieved together, I’m sure for many patients is to engage, engage and be educated, learn about what you have, learn about the abilities to help you if you are not already. Be an active participant because these conditions are there to stay with you; we don’t have a cure yet. We are working toward it. But life can be good, life can be controlled well. We have means and we are trying to do our best. So be an active participant with the local doctor, with expert. Make the most out of it and if you need a second opinion, search for it. Basically, do not give up. Be your own advocate, if you like.

Beth:

Wonderful, and I couldn’t agree with you more. It’s just very inspirational and those words will resonate with many of our viewers, I know.

Thank you, I’ve enjoyed speaking with such experts on this panel today, and thank you for the words of wisdom and best of good luck and health to all of our viewers, and Nick and Andrea. Thank you.

Living Well with Multiple Myeloma – Staying in Tip Top Shape

Exercising With Multiple Myeloma – Staying in Tip Top Shape

Living Well With Multiple Myeloma from Patient Empowerment Network on Vimeo.

How do you exercise if you have myeloma? Should myeloma patients avoid exercise all together? Melanie House, a physical therapist at the University of Iowa Hospitals and Clinics specializing in prescribing exercise, shares how and when to exercise with myeloma.  Jim Bond, aka James Bond, a 25-year, stage III myeloma survivor and Matt Goldman, a 7-year myeloma survivor, shares how they stay active trough cycling and how they challenge themselves to stay in tip-top shape.

Patients as Partners Conference

We are pleased to announce that we will be attending our parter, The Conference Forum’s, Patients as Partners US Conference this March in Philadelphia, PA. We are looking forward to hearing from leaders in the industry, meeting with colleges, and learning how to incorporate the patient perspective.

The 4th Annual Patients as Partners US is the only conference putting the patient voice on the same level as industry and government in finding solutions to engage and empower patients in the clinical trial process. It is co-produced with patients, industry, academia, government and nonprofit organizations to establish a well-rounded program that addresses the needs of all stakeholders seeking to implement and advance patient involvement across the entire clinical development continuum. Join us and  get 15% off using our discount code PEN15 >> http://theconferenceforum.org/conferences/patients-as-partners/overview/. We hope to see you there!

If you cannot attend, please follow along as we will be live tweeting this exciting event! (@power4patients) Tweet us and let us know what you are interested in hearing or learning about!

Register using our coupon code PEN15 for 15% off!

Patients as Partners Event History

When this question was asked to our Disrupting Clinical Trials (DPharm) audience seven years ago, no one raised their hand. Immediately we saw the need for a conference on service for patients in clinical trials. However, more importantly, we saw the urgent need for the patient perspective in driving a conference on collaborating in clinical research.

What Patient Research Taught Us

Patients taught us empathy not only with their disease, but with their lifestyle and struggles in finding and experiencing a clinical trial. In particular, we learned the need to:

  1. Understand and incorporate the patient’s voice in designing clinical trials and developing a clinical endpoint.
  2. Vastly improve the patient’s entire experience in a clinical trial.

If it were not for patient research, we would not have an event 100% designed for the benefit of the patient.

We look forward to seeing you at the 4th annual Patients as Partners US this March 2-3.

Register using our coupon code PEN15 for 15% off!

Patients in Clinical Trials or Patient Advocates Needing Scholarships,
Contact Us at service@tcfllc.org

Accredited by 

#Patients2017 organized by:

Please do not reply directly to this email. Contact onalee@tcfllc.org with any inquiries.

Event overview: http://theconferenceforum.org/conferences/patients-as-partners/overview/
Event press release: http://www.prweb.com/releases/2017/01/prweb14018129.htm
Event hashtag: #Patients2017
TCF Twitter handle: @ConferenceForum

 

17 Tips For Patient Engagement

To kick off 2017 and new year of patient engagement and empowerment, we are showcasing 17 tips from patients, caregivers, and leaders throughout the industry. A special thanks to our partner, The Conference Forum and their Patients as Partners US program, for helping to obtain a few of these excellent testimonials. Their tips and advice are as follows.

 

1. Jack Aiello

“Patients and their care partners need to get educated about their disease and become their own best patient advocates.  The internet can be a great resource where disease specialists create videos on topics from disease overview to treatments and side effects.  And by getting 2nd and 3rd opinions from disease specialists, you put yourself in the best possible position to make good decisions with your doctor.”


2. Randy Broad

One very important aspect of treatment, especially at the time of diagnosis, is to understand what treatment options your oncology team is recommending and why.  Many providers have ‘pathways’ which determine how a specific cancer (and stage) be treated.  Be sure to fully understand what’s behind and underneath this directive.  Many times it can be determined based upon cost, not best options currently available.”


3. Matthew Zachary

“Patients have the right to survive with dignity and quality and we deserve to be treated age-appropriately. More so, they also have the right to be made aware of the relevant support resources they are entitled to so they can get busy living. This is what it means to face cancer.”


4. Cindy Chmielewski

“Knowledge is power. Educated patients are empowered. Educate yourself. Join a support community either in-person or online; follow the #mmsm hashtag on Twitter; subscribe to disease appropriate YouTube channels, listen to webcasts/podcasts presented by patient advocacy organizations and engage in meaningful discussions with your healthcare team.

Be a partner in your care. “


5. Jennifer Ahlstrom

“Don’t be afraid to speak up. Patients who ask their doctor questions, ask for explanations and treatment rationales get better outcomes. Myeloma is a very complicated disease and there are now an incredible number of treatment options available for patients. If you don’t feel comfortable asking your doctor questions, it’s time to find another doctor, preferably a myeloma specialist who treats hundreds of myeloma patients.”


6. Marie Ennis-O’Connor

“Becoming an empowered patient means taking personal responsibility for your health. You engage with health care providers and systems in ways that are proactive, rather than reactive. You take positive steps in the direction of the care that is right for you.”


7. Scott Riccio

“Remember that YOU get to define value for your own care.  Nobody can read your mind, though, so you have to share what you value, how it impacts you, and what tradeoffs you are willing to make to get the outcomes YOU want.”


8. Andrew Schorr

“Ask your doctor questions! How can we be sure my diagnosis is 100% accurate? How much experience do you have treating this illness? Are there other tests that can help me get the most on-target treatment for my case? What are all the approved medicines for my situation? Why would you recommend one over another? What clinical trials could be right for me, whether or not you have them at this clinic/hospital?”


9. Esther Schorr

“As a care partner, it really is a time to be hopeful as the advances in cancer treatment are moving very, very fast. As it is for the patient you love, it is key to stay educated about advances in treatment options that might be right, and be actively involved in discussions about genetic testing and clinical trials.  It’s also critical to lean on your personal community…friends, family, counselors…in order to “keep it in the road” and retain realistic optimism. As more and more survivors and care partners reach out to each other and share stories, we all gain insights and perspective – and you will hopefully feel supported along the cancer journey. We are all in it together, and we are here for each other.”


10. Amy Ohm

“Caregivers need self-care to effectively care for a loved one – always make sure to put on your oxygen mask first! It can be incredibly challenging to focus on ones health with the daily demands of care-giving. Make 2017 the year you assess your own health and strive to reduce daily stress. Connecting privately with those who relate and to share experience to learn from others can help. We want you to be health in the New Year!”


11. David Wallace

“It is imperative that you gain a solid understanding of your disease so you can become your own advocate.  Connecting with other knowledgeable patients via social media or online forums to learn what has worked or failed to work for them is a good start.  Understand the treatment options that are available to you.  See an MPN specialist who will work with your local hematologist.  If you are not being treated with care and respect, don’t hesitate to seek a 2nd opinion and change doctors until you receive the level of care you deserve.”


12. Carol Preston

“NEVER hesitate to ask questions.  In fact, write down your questions in advance, take them with you to your appointment and go through them one by one.  Be sure to write down the answers (or get your care partner to take notes) as a short pencil is far better than a long memory.  Better yet, record the QA on your smart phone so that you can listen later to the answers as you’ll retain only about 10% of what the doc tells you during your appointment.”


 13. T.J. Sharpe

“Patients and caregivers can be better engaged in 2017 by reaching out to their patient community and actively becoming involved in the support of fellow patients through person to person and group interaction.  Patients and their caregivers can raise the bar for everyone involved in healthcare so that the expectations of patients as a partner in their care is not just accepted, but standard and demanded by patients.”


14. Marilyn Metcalf

“Set our goals together in the New Year, and then work together on our plans and make them happen.”


15. Durhane Wong-Rieger

“Patients are basically a heterogeneous lot, coming with all types of experiences and talents, as well as desires and needs.  Some patients want to have a voice in high-level  policy and system decision-making; some want to extend a personal hand of support.  The more diverse the channels and opportunities for involvement, the more patients can take active and meaningful roles. Every person naturally wants to feel respected and empowered so it doesn’t take much to engage patients: provide a portal, support, information, acknowledgement and most important action.”


16. Deb Maskens

“Patients and caregivers get information from a wide variety of sources, from personal anecdote to television advertising to medical journals. Empowerment and engagement for patients and caregivers in 2017 needs to start by providing them with more information that is trusted, balanced, and objective. Information is power. Let’s give patients and caregivers the information they need as the first step for them to be empowered and engaged in treatment decisions that are right for them as individuals.”


17. Jeff Folloder

“Resource management.  I’m not talking about managing the funds to pay for treatment or care.  I’m talking about managing you.  I got great advice from a lady in a waiting room at MD Anderson.  She told me that every day we wake up with a bucket of energy that we can spend on anything we want and it’s gone at the end of the day.  We can spend that energy on quality things and be tired and fulfilled.  Or we can spend it on silly things like worry and regret and go to sleep tired and empty.  She’s right.  And I remember her words every day.”

How Can Myeloma Patients Advocate For Themselves?

How can myeloma patients advocate for themselves? This Patient Café® was hosted by Jack Aiello, Patient Power host and advocate. He was joined by four different myeloma patients. Together, they share their stories, insights, and advice to become a self-advocates. Check out the full video below to hear from these patient experts.

How Can Myeloma Patients Advocate For Themselves? from Patient Empowerment Network on Vimeo.

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