Not to Worry! Your Guide to Watch and Wait

Not to Worry! Your Guide to Watch and Wait from Patient Empowerment Network on Vimeo.

 Watch and wait, or active surveillance, often feels like watch and worry to CLL patients. Dr. Brian Hill provides a comprehensive guide to the period of time before CLL treatment begins and shares approaches for managing anxiety.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert.

Related Resources

Overwhelmed By a CLL Diagnosis? Key Steps to Take

How to Learn More About Your CLL

Essential Lab Tests for CLL Patients


Transcript:

Dr. Brian Hill:

So, watch and wait is the term that’s referred to for not actively treating a patient with CLL after the diagnosis. As many people probably out there watching know, the diagnosis of CLL is often made incidentally or accidentally through routine laboratory tests that are done for some other reason.

Maybe they are going to have surgery. Or maybe they are going to have just a primary care checkup. And blood count shows too many white blood cells. And everything else is fine. The patient feels normal. There’s no symptom. But it leads to a referral usually to a hematologist who then does more testing and makes a diagnosis of chronic lymphocytic leukemia. The word leukemia is very scary because it often conjures up images of acute leukemia which is a disease that can make people very sick very quickly.

We’re taught in much of medicine and in much of cancer that early diagnosis and early treatment is very important. And it is very important for many conditions – breast cancer or we’re taught let’s get our mammograms.

And have an early detection and immediate treatment to cure the breast cancer. Similarly, colon cancer – get your colonoscopy, get your diagnosis sooner rather than later. And have surgery so you can have a higher likelihood of a cure. In the case of chronic lymphocytic leukemia, it’s never been shown despite multiple attempts over many decades, that treating someone with CLL is – earlier, is going to impact the outcomes and the big picture. But we do know that treating CLL earlier can lead to more side effects earlier.

So, in other words, if you feel fine and your blood counts are just a little abnormal, and there’s not compelling indication to treat, we can safely observe patients until an indication for treatment exists. And what I tell patients is that if we treat today, the treatment will work.

If we treat tomorrow, the treatment will work. And if we treat in five years, the treatment will work. So, there’s – we have very good evidence that delaying treatment until you need it does not compromise the likelihood of the treatment working. So, it’s a little bit of a different mindset from other types of cancer where we are taught to treat early and immediately. So, a lot of times people will call it watch and worry instead of watch and wait, and there’s a lot of anxiety about that.

Again, their diagnosis has the word leukemia in it. It can be a very scary time. And it takes a little bit of trust to be convinced that you don’t need to be treated just because you have it. And that’s often times when we do get second opinions if the first hematologist/oncologist says it’s okay to watch it and wait. We don’t need to treat. A lot of the time people then seek another opinion to confirm that’s accurate. And in most cases – I would say 90% of the time when I’ve had a second opinion for a patient who’s been recommended to watch and wait, I typically concur with that recommendation.

So, during watchful waiting or – I like to call it active surveillance because it’s not that we aren’t doing anything, we are surveilling or monitoring. And the two things that we monitor are symptoms and blood counts. So, it sort of begs the question that many people ask which is, “If you are not going to treat me now, when will you treat me? When will I need to be treated?” And the first indication – the first thing we look at is symptoms. So, if you have symptoms of significant fatigue to the point where you are really having a difficult time functioning.

Or if you have drenching night sweats that wake you up from night and make you change your nightclothes. Those type of symptoms would push us to treat. So, those are the things that are being asked of patients at their regular follow up which is usually every two or three months initially.

And sometimes can be spaced out to every four to six months if things are stable. But usually during the first year you want to be checking on folks every two to three months. Weight loss would be another symptom to look out for – sort of unintentional weight loss. The other thing we monitor is the blood counts. So, with a simple CBC or complete blood count, we can see what is happening with the white blood cell count which may and often goes up.

And a lot of folks focus on the white blood cell count and its trajectory and how that is rising. Some people’s white blood cell count can fluctuate. Others can stay relatively flat. And some people do have a continued rise on the white blood cell count. The white blood cell count in and of itself is not the final reason to recommend treatment.

But with time, as the white blood cell count goes up, we sometimes see the other numbers going down. And actually, the other numbers going down are the ones that are more important. Those numbers are – the red blood cell count measurement which is usually measured by hemoglobin concentration or hematocrit. And then the other is the platelet number. So, if either the hemoglobin or the platelet number gets below threshold, those are typically indications for treatment.

So, during this period of observation or active surveillance – watchful waiting, whatever term you choose. This can go on for years.

And it can be associated with anxiety. So, trying to do things to cope with managing anxiety is important. Other things that many people are interested in are – is diet. So, do we know of a particular food or food group that we should focus on? Or is there something we should avoid? And the short answer to that is that many – it’s a difficult topic to study. As you might imagine, diet can be so varied around people. And in a typical week the average person eats so many different types of foods that it’s difficult to focus in on one particular thing.

What we can say is that in general for health, clearly fresh fruits and vegetables are the best source of nutrition. And also, are best for your health.

Avoiding processed foods and processed meats and other foods that are high in saturated fats is probably important in general for your health. Although we can’t say specifically that it’s definitely going to make an impact in the white blood cell count or the trajectory of the CLL. In terms of supplements and natural products, many people are interested in this topic. And again, it is a difficult one to study. Some of the natural products out there are purified forms of things from plants and other ingestible herbs and so forth.

But the problem is, is that if you take any component – even if it’s natural occurring, take it in large quantities it can lead to other problems. There was a well-known study from – that studied the impact of green tea extract on the white blood cell count.

And if you took large quantities of green tea extract, it seemed as if it did sort of lower the white blood cell count a little bit. But some people also had abnormalities of their liver function as a result. So, I don’t recommend green tea extract. And I instead say, “If you like tea and you want to drink green tea, I think that’s probably fine.” But I wouldn’t do it in excess. And just maybe try to incorporate it into a balance diet otherwise.

Why You Need a CLL Specialist

Why You Need a CLL Specialist from Patient Empowerment Network on Vimeo.

Why should you seek care with a CLL specialist? Dr. Brian Hill outlines the benefits of seeing a CLL expert and advice for approaching a second opinion.

Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert

See More From The Pro-Active CLL Patient Toolkit


Related Resources

Overwhelmed By a CLL Diagnosis? Key Steps to Take

How to Learn More About Your CLL

Nervous About A Second Opinion? How to Confront Your Fears

 


Transcript:

Dr. Brian Hill:

Patients should consider seeing a CLL specialist because oncology is a very complicated field. There are many different types of cancers that oncologists treat. And particularly in smaller hospitals, maybe with general oncologists who see lung cancer, colon cancer, breast cancer and CLL as well as many other types of – patients with many other types of problems. It’s very difficult to stay 100% up to date on all those fields. All of oncology is very rapidly evolving.

And the progress that’s being made in all the diseases I mentioned is very fast paced. And so, things change. And there’s new data emerging all the time. And CLL specialists or lymphoma specialists are able to stay more up to date on these topics. And usually that can result in maybe better options for patients.

So, we often get second opinions or third opinions for patients with CLL.

And one of things patients are understandably concerned about sometimes is the impact this will have on their primary oncologist. Maybe they are from a smaller town or have a smaller hospital. They have an oncologist, hematologist, gynecologist who they like, and they trust, and they don’t want to hurt their feelings or damage the relationship because they may need their primary or local hematologist, oncologist to help them if they are sick or something goes wrong.

So, I think that most oncologists recognize that – again, the field is very complicated. And it’s common for people to seek opinions from referral centers. So, I would say the best thing is to be up front about it. And explain to their primary that it’s not that they don’t like them or don’t trust them.

But it’s important – it’s their health. And they really want to make sure they have another set of eyes. And I even sometimes encourage my own patients that if they have questions about what I’m talking to them, to welcome another opinion. And if there’s good communication about it, I don’t think that you should be concerned about the sort of hurt feelings aspect of it.

How to Learn More About Your CLL

How to Learn More About Your CLL from Patient Empowerment Network on Vimeo.

How can you learn more about CLL? CLL Expert Dr. Javier Pinilla-Ibarz shares credible resources and valuable tips to help you become an educated and empowered patient.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Treatment & Side Effects

The Truth About Managing CLL Treatment Side Effects

The Truth About CLL Treatment Options


Transcript:

Patricia Murphy:        

Okay, well we’ve talked about a lot of treatment and side effects and myths. As an informed patient, I may want to go out on the internet and find out all I can about CLL. What should I be looking for? What should I be careful about when it comes to online awareness and health literacy?

Dr. Javier Pinilla-Ibarz:        

Very, very important topic that I love to really discuss with my patients. I always say that some patients kind of intoxicate themselves with multiple websites and with different backgrounds.

I think we – I do recommend them to really go to the websites, to the websites who really provide a very fair and really clean and important information. I would definitely – we were discussing about the Leukemia Lymphoma Society, CLL Society, Patient Power, to really – National Cancer Institute’s website, places that they have very well filtered information that we can really give to the patient. There is no doubt there’s many others not in this list, but I think we always have to be aware that there’s other websites that may not really provide really, really a good information or may really confuse our patients. So, I like to always really go to the sources that I really trust the most.

Patricia Murphy:

Yeah, so reputable sources and always checking with your doctor, obviously, about things that you’re considering.

Dr. Javier Pinilla-Ibarz:        

Absolutely. Absolutely. I always tell to my patients, “You go there, you look at that, you read, but then after that you have a question. Come because sometimes you may have misconceptions.”

Tips for Determining the Best CLL Treatment for You

Tips for Determining the Best CLL Treatment for You from Patient Empowerment Network on Vimeo.

CLL expert Dr. Javier Pinilla-Ibarz explains how a treatment regimen is chosen, stressing the important role that patient preference plays in making a decision.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

Fact or Fiction? CLL Treatment & Side Effects

The Truth About CLL Treatment Options

CLL Treatment: What Are Your Current Options?


Transcript:

Patricia Murphy:        

What are the things that you’re thinking about when you’re considering treatment for your patients, when you’re making those decisions?

Dr. Javier Pinilla:        

Well, I think it’s important to really notice and to really understand my patient, is that we need to provide education. We need to provide education, and obviously, every – many, many patients ask me, “Doctor, what I should do?” Right?

But I think it’s very important for me to understand what is the goals of every patient, right? Age, comorbid condition, way of life, people like to travel versus staying in the same place. So, I try to really educate about the options because we are very lucky that we have multiple options. We also understand – so, what is gonna be the difficulty is to really get therapy A versus therapy B and how much control or monitoring they require, and finally also, as mentioned before, to try to customize therapies for different patients.

I always say that – we discuss in the beginning that not everyone with CLL requires therapy at the beginning. However, when people require therapy, not everyone requires therapy for the same reason. Some people may require therapy because they are anemic, okay, extreme anemia. Why? Because their bone marrow cannot really produce enough red cells or even platelets. Why? Because they is full of CLL cells.

So, those patients in my opinion, they can really do very well with strategies as BCL-2 inhibitor in combination and alone. Why? Because these drugs is able to truly and very, very efficaciously really eliminate the CLL.

So, we go into another scenario. Patient with very high, bulky lymph nodes in the neck, axillary and abdominal, for example, with enlarged spleen who may have very, very severe B-cell symptoms. We note that we cannot apply anything. There’s no doubt that introduction of Bruton’s tyrosine kinase inhibitor or even – is extremely successful in reducing the symptomatology very fast and shrinking the lymph nodes in a very short period of time. So, again, I would say that it’s black and blue or like a black and white and – different.

Patricia Murphy:        

Black and white.

Dr. Javier Pinilla:        

Black and white. Thank you. So, but the truth is different patients may require different strategies, and obviously, patients’ preference are really, really important.

Patient may come back to be in therapy for life, maybe patient maybe don’t care. Patient may really, really, really want specifically shorter therapy. So, I think we need to really understand that in the options and start to work with them, also depending on the presentation on the needs for therapy.

What You Need to Know About Developing CLL Research 

What You Need to Know About Developing CLL Research from Patient Empowerment Network on Vimeo.

Are there CLL research advances that patients should be aware of? Dr. Javier Pinilla-Ibarz outlines the latest in CLL treatment and research.

Dr. Javier Pinilla-Ibarz is the Lymphoma Section Head and Director of Immunotherapy in the malignant hematology department at Moffitt Cancer Center. More about this expert here.

See More From The Fact or Fiction? CLL Series


Related Resources

Which Molecular Tests for CLL Will You Need?

CLL Treatment: What Are Your Current Options?

Tips for Determining the Best CLL Treatment For You


Transcript:

Patricia Murphy:        

It sounds like we have made tremendous progress with CLL. What kind of clinical trials should patients be investigating? What are they – what’s out there?

Dr. Javier Pinilla:        

Well, there is no doubt that a lot of people until now were really looking for venetoclax front line clinical trials. Now it’s available in the clinical practice. However, we’re still trying to figure out combination of drugs, right? For example, in this case, I have mentioned we have a very good drug like ibrutinib in front line. We have all the BTK inhibitors that are coming up such as acalabrutinib. We have other PI3K inhibitors that are being not very successful in the front line, right to the second line, like idelalisib, duvelisib, even copanlisib.

And other drugs, like I said, ibrutinib. So, we have a plethora of drugs, really available as clinical trial outside the ones that have approved. However, one of the things that we are really starting to explore in the recent year is how we combine all these mechanisms of action. The most typical combination that we are really now under trial is the combination of two or three drugs, as happens in many other forms of cancer.

So, this combination of these three – some of, two or three of these drugs, is very, very well studied now in an integral trial, the ECOG, the alliance trial, we gonna start to see those trials, and of course, our patients in front line will have the opportunity. Besides that, we gonna see more and more trials are going to combine patients who are already in chronic therapy with ibrutinib with a second drug, with the goal to in the future be able to discontinue therapy because it’s one of the issues that ibrutinib has these days. Patient takes the drug for life.

How Can The CLL Society Help You?

How Can The CLL Society Help You? from Patient Empowerment Network on Vimeo.

Dr. Brian Koffman, co-founder of The CLL Society, explains its mission and goals. Dr. Koffman reviews programs and services that assist chronic lymphocytic leukemia (CLL) patients and their loved ones.

Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.

See More From The Pro-Active CLL Patient Toolkit


Related Resources

How Can Patients Advocate for Genetic Testing

Expert Advice for Newly Diagnosed CLL Patients

CLL Office Visit Planner

 


Transcript:

Dr. Koffman:              

Hi, I’m Dr. Brian Koffman. I’m a retired family doctor, and I’m the cofounder, chief medical officer, and executive vice president of the CLL Society. And, what, you ask, is the CLL Society? Well, the CLL Society is a 501(c)3 not-profit that focuses on the unmet needs of the CLL community in terms of supporting, educating, advocating on behalf of, and researching what needs to be done in the CLL community.

The CLL Society is very proud of the programs that we offer. So, among the programs that we offer, the backbone is a website that covers everything from the very basic kind of information – frequently asked questions – to really the latest research that’s coming out.

Also, on the website, CLLSociety.org, we have a whole toolbox, and in that toolbox, there are lists of acronyms. There are links to other CLL resources. There are links to CLL experts around the country. There are spreadsheets to help you with your lab sheet – lab results so you can follow them and mark the trans-Excel spreadsheet. We also do trial educational forums across the country with places like MD Anderson, Dana-Farber, or the National Institutes of Health.

And, we have 30-plus support groups in Canada and the USA that meet generally on a monthly basis, so there’s a peer-to-peer interaction, and we provide education to all of those. And, one of the programs that I’m most proud of is for patients who don’t have access to an expert. We provide free virtual consultations with CLL experts from the top institutions through a Zoom-type platform that’s HIPAA-compliant so patients can ask their questions to a remote expert, that expert reviews their medical records, and then to their local hematologist so they get the benefit of a consult that they wouldn’t otherwise.

Nervous About A Second Opinion? How to Confront Your Fears

Nervous About A Second Opinion? How to Confront Your Fears. from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patients may be hesitant to ask for a second opinion to help guide their care and treatment choices. Dr. Brian Koffman shares his advice for confronting fears and becoming a confident self-advocate.

Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.

See More From The Pro-Active CLL Patient Toolkit


Related Resources

How Can Patients Advocate for Genetic Testing

Expert Advice for Newly Diagnosed CLL Patients

CLL Office Visit Planner


Transcript:

Dr. Koffman:   

It’s a relatively rare cancer, and most hematologists and oncologists are busy taking care of the more common cancers, like breast, colon, prostate, or lung cancer.

So, they don’t really have a lot of experience compared to a CLL expert who only sees CLL patients, or more than half their practice is CLL patients, in terms of taking care of those patients. There are roughly 20,000 hematologist/oncologists in the USA, and there are roughly 20,000 new patients diagnosed with CLL a year, so if you do the math, you can figure out a community hematologist might be seeing one new CLL patient every year.

So, you wouldn’t see a surgeon who does one hernia repair a year, you’d see one who does many every week. So – and, it’s not just that these people have more experience. There’s research that shows that there’s a survival benefit to seeing a CLL expert, and people live roughly two years longer – based on some old research – by just having an expert as part of their team.

Above and beyond that, CLL is being revolutionized in how it’s being treated, and there’s all kinds of new therapy, and what the best treatment today will be upstaged by a better treatment next month, perhaps. So, unless you’re really focused on CLL, you’re not gonna be aware of what the latest data, what the latest research is, so it’s critically important because they’re on top of what the latest research is, they’re on top of what the latest clinical trials are, they’re on top of the best way to use the new medications that are available, and they provide you with significant survival advantage and management of some of the potential complications with CLL.

So, some people are concerned about getting a second opinion because they’re worried that it might portray to their doctor that they don’t have trust in their judgement or that they’re not happy with the care that they’re getting. Well, as a retired physician, let me assure you that most doctors are very thick-skinned, and we generally welcome people getting another opinion – a second opinion – and medicine is collaborative, and so, most doctors aren’t hesitant about you doing that, and welcome that. Bluntly, if you have a doctor who doesn’t want you to get a second opinion, that would be, for me, a real urgency to get a second opinion.

If hesitant or nervous about getting a second opinion, what I would encourage you to do is think hard about what – whose skin is in this game. Who is the person who has the disease? Who is the person that’s gonna benefit from getting that extra information? So, what is the worst that could happen? The worst that could happen is that you could see the expert, get an opinion that’s identical to your own physician’s, and that just inspires confidence in what’s going on.

The other thing that could happen is there might be an alternative that’s more attractive – less toxic, more effective – and wouldn’t you kick yourself if you hadn’t taken that chance and pursued getting that extra information? So, it’s – every medical decision should be a shared medical decision, and it’s all right as patients to ask for that second opinion and just…not to be hesitant about doing it.

Really, again, it’s rare that a doctor is gonna object to you doing that, and if your doctor objects, then I think you’ve gotta look at what that means, and especially in view of the data, there’s a survival advantage to getting a second opinion.

CLL Patient Cafe® – March 2019

Managing Side Effects and Symptoms

A group of CLL patients and a care partner discuss living with CLL and how to manage its symptoms and side effects.

For more CLL Patient Cafe® and other programs, please visit here.


Transcript:

Andrew:

Hello, and welcome to this Patient Empowerment Network program. I’m Andrew Schorr, with Patient Power, and I want to thank you for joining us for another one of our CLL patient programs, and today, we’re gonna go from the United Kingdom, England, all the way to California with a group of people as we discuss living with CLL, dealing with symptoms and side effects. Emotional issues, how we communicate with our healthcare teams. I’ve been living with CLL about 23 years now, and also joining me here in California is Esther Schorr, care partner of course. Esther, thank you for being with us.

Esther:

No problem.

Andrew:

And along the way we’re going to include, obviously, the role of someone who advocates for you, and urge you to have someone to do that. Let’s go all the way over to England. We have Adrian Warnock with us. Adrian, you’ve been living with CLL how long?

Adrian:

Well, next month or so it’ll be two years, actually.

Andrew:

Wow, okay, and you’re a physician by training, so when all this medical stuff comes up, you’re evaluating it based on your training probably as well, although I know you haven’t been a CLL specialist.

Adrian:

Yes, that makes it quite an interesting thing, because when you look at the terminology, you have clinical trials. I’ve actually helped them run a lot of clinical trials, but not in hematology, in a completely different disease area. So, there’s some things that are very sort of familiar, and other things are less so.

Andrew:

Right. And we should mention that you’ve had a number of hospitalizations. You’ve had Treatment with FCR, fludarabine, cyclophosphamide, Rituximab, or Rituxan, that many people have had. I’ve had that, too. And right now, you’re doing okay. 

Adrian:

Yeah, I hope so. I mean, it’s early days yet. My last FCR was just a couple of weeks ago. But what I would say is my lymphocyte count is less than one at the moment, so if that continues to be the case, then hopefully we’ll conclude it was a good outcome.

Andrew:

Okay, well we’ll talk more about your journey. Let’s go over to New York. There’s Jay Blatt.

Jay:

Hi, everyone.

Andrew:

And Jay, you were diagnosed when?

Jay:

January of 2016.

Andrew:

Okay, and what led to that diagnosis?

Jay:

What led to the diagnosis was seven years of my platelets diminishing consistently, and also having two bouts of a bronchitis that I couldn’t shake, and then finally, in November of 2015, while fishing on a jetty in the middle of nowhere, I bent down and a blood clot developed in my thing. And at that point, as thick as I am, I knew something was wrong.

Andrew:

Okay, and you’ve had no formal treatment, but you’ve been on a special diet that you believe has helped you.

Jay:

Yes, but not exactly. I’ve been on a macrobiotic protocol that includes diet, nurturing the food a certain way, and exercise, and I develop my own type of CLL wellness program, using macrobiotics as a foundation. And it’s a very blood-centric dynamic, where I believe all good health comes from having healthy blood.

Andrew:

Okay, well, we all want to know what we can do ourselves, and that’s gonna vary by person. I’ll talk about mine as well. And joining us from Southern California, someone who goes to the same clinic at University of California, San Diego, that I do, is Maggie Buckenmayor. Maggie, you are still in the watch and wait phase. When were you diagnosed? 

Maggie:

I was diagnosed on November first, 2018, and my diagnosis happened from just a routine annual blood check. And they noticed that my lymphocyte counts were high.

Andrew:

Okay, and when you were told, maybe even as an offhand remark, that it could be leukemia, that was a heavy blow for you, wasn’t it?

Maggie:

Oh, it was extremely tough. My husband and I were actually travelling, and I got a call from my intern, and she started to talk about my blood results, and said, “Oh, you have some strange blood results. It may just be an infection, or it may be, you may have cancer, and it may be leukemia,” just right there on the phone. And I’ve never felt better. I exercise a lot. I eat a healthy diet.

I’m just in a very, very positive place in my life, and that hit me like a ton of bricks, because I never ever imagined that I would have leukemia, and when you hear the leukemia word, it’s pretty tough. It was pretty tough for me to wrap my head around. So, I went into kind of a tailspin there for a while.

Andrew:

My understanding is you met up with your twin sister, and you were wondering whether you were gonna tell anybody, and then it just came out.

Maggie:

Yeah, and actually, it was during that trip, and I told my husband, “I’m not gonna tell anyone. This is just between you and me. Let’s do more tests, find out exactly what’s going on.” Because at that point, they didn’t know if it was leukemia or lymphoma or what was happening. And I saw my twin sister, who I’m extremely close to, and just one look at her, I burst out crying and I went running up to her and I said, I get upset still, but I said, “I’ve got blood cancer.”

 And she just gave me the biggest hug and, luckily, she’s a therapist, and she was great. And I can’t thank enough my family and my support system. And today I’ve learned a lot more about the disease. I’m, like you said, at UCSD Moores Cancer Center. I have a fabulous doctor there. And a lot of that has been my anxiety and tension has really calmed down, and I feel like I’m on a great path. I feel healthy, I feel great, and when it comes to time that I need treatment, I’ve got a really good, positive headset now. But that first month was awfully really bad.

Andrew:

I understand. Now Adrian, you had not just issues with being told you had cancer, but you had hospitalizations that came with this, too.

Adrian:

Yeah, so what happened with me, actually, when I got phoned up as well, I mean, that’s interesting that you should have a phone call. I don’t think anyone should hear news like this over the phone. But I got a phone call, I was actually lying in a hospital bed, with pneumonia, basically unable to walk, unable to breathe, and my head wasn’t working properly, I couldn’t really think straight. And it was the doctor from the first hospital that I had gone to in A&E a couple of days before, saying, “Hey, I’ve looked at your blood under the microscope, and,” like with you, she said, “I’m pretty sure you’ve got leukemia. I need to see you urgently.”

And I said, “Well, I’m in hospital, actually.” So yeah, I was dealing a sort of quite nasty pneumonia that took weeks to get on top of, whilst dealing with a three-quarters diagnosis. And honestly, I don’t know if doctors ever watch these, but really, they should learn a lot better than to tell people over the phone. It’s not very fun.

Andrew:

Right, and you’ve had a number of hospitalizations, but you’re doing well now.

Adrian:

Yeah, that’s right. Unusually, I had surgery. I had two operations on my tonsils, which can happen with people with CLL, but perhaps it’s a bit atypical. Mine was trying to choke me to death. I was losing my airways at one point.

But since I’ve had the FCR, my lymphocyte count is way down now. It’s well below one. Obviously, it was only a couple of weeks ago that I had the last one. But I’m back in watch and wait and worry, really. I’m very aware that particularly that first three months after the FCR will probably help to indicate whether it’s taken or not.

Andrew:

And Jay, so you’ve managed your CLL with your diet and it’s worked for you. So, when you say macrobiotic diet, what does that mean?

Jay:

Okay, well it means, just like doctors have a different philosophy and they’re still doctors, doing the same type of thing. Macrobiotics can mean a lot of different things, but my point of view is about lowering the impact of your CLL, because I’m doing this because of CLL, and being able to live as healthy a life as you can.

But macrobiotics is basically a way of eating, a way of preparing food. It’s a healthy diet. It’s an anti-inflammatory, plant-based diet, and some fish. And you can’t just do macrobiotics half way. You have to go for making it a lifestyle, and that’s what I do. So, I don’t eat meat, which I’m fine with other people eating meat, but for me, it’s my choice not to. I don’t eat poultry. I don’t eat dairy, and I try not to eat a lot of wheat. But the bottom line, blood cells have to be made somehow, and they’re made as a result of the way you eat and the way you exercise. Believe it or not, that impacts blood cells.

So, unless someone’s ready to study me personally, I’m just going on faith here, but 38 months into it, all my blood counts have also improved, and my white blood cells have remained not only stable, but they’ve actually gone down, so I’m very pleased.

Andrew:

Okay, so I wanna give credit to Esther Schorr, my wife of how many years now, Esther? 30?

Esther:

It’s going on 34.

Andrew:

34 years. Esther and I have always exercised together, ran last night. Been living with CLL 23 years now, been treated twice: FCR, and then later with Obinutuzumab and high-dose steroid about a year, year and a half ago, and I feel really good. And our diet, again, Jay, we don’t know if that’s the thing, but now we’re really not eating red meat. We’re eating fish, chicken, not even a lot of that, fruit and vegetables.

Esther:

As organic as possible.

Andrew:

Point is, nobody’s studied us, but we do feel good. And I think all of us want to say, what can we do for ourselves. I wanna ask Esther, though, what we do ourselves is part of it. But what about the role of a care partner, whether it’s a wife or best friend or adult children? What would you say to care partners?

Esther:

Well, I just wanna back up for just a second and acknowledge what I just heard from all of you, and especially you, Maggie, because of the very high emotional impact. I just wanna acknowledge that for care partners with a loved one who’s diagnosed with something that feels and may well be very serious, the emotional impact can be as severe for your loved ones as it is for a patient in a different way.

Like, you feel helpless. I know that when Andrew was diagnosed, my feelings of, “Oh, my God, what can I do to help with this situation, because it’s purely a medical thing. I’m not a medical person. What’s the role of me as, I call myself a care partner.” And so, what I would say is over the years, what I’ve felt was the best way for me to support Andrew through a lot of ups and downs, it to be an advocate. Be a researcher and find ways for me to keep my head straight, when he happens to be a very practical kind of guy. But if he were somebody who was also very emotional, I think the role would be to be the voice of reason, the voice of practicality, looking at what dietary options there might be, what treatment options there might be.

Be actively involved in the discussions with the healthcare team, so that there are two sets of ears that are hearing the same thing. I’ve just felt like I’ve been the partner advocate for Andrew, and a pair of listening ears that’s digesting what’s being said, processing it, and giving him back, hopefully, an educated opinion about direction to go.

So, I don’t know if that answers your question, Andrew, but I think it’s a lot of advocacy, and being the person that’s gonna look at what are the more holistic supplementary things that can be done to support somebody who’s made a treatment decision. Let’s put it that way, because ultimately a patient has to decide. My body, my decision, with my doctor. But being a care partner is also about lending some sort of an educated perspective, and saying, “Here are some other things that we might consider doing together, or how I may be able to help you.

Andrew:

Maggie, do you draw on the family? You ended up telling them all. Do you draw on them for support?

Maggie:

I really do. My husband has been amazing. He’s kind of like my steady rock, and he goes to every doctor’s appointment with me. He transcribes everything that’s said in the doctor’s appointments. He researches with me on the internet, so that’s an amazing – My twin sister and her husband are both therapists and have helped walk me through that.

My children are very understanding. They were very frightened when I first told them, and I try to give them more and more information. I’ve given them the ling to your website. That’s helped them immensely. So, and then I’ve told a close group of friends, too, and they’re very supportive. Not many of them really understand the disease, but they’re very supportive. So, for me, it’s critical I have that support system. 

Esther:

Andrew, I was just going to add one other thing, that there isn’t always a family member that’s available. I just want to acknowledge that sometimes, somebody doesn’t have a partner, or a sister, or a father, or an adult child, but as a care partner, I would encourage anybody that’s dealing with this kind of thing, find somebody in your life, even if it’s a nurse, or it’s a counselor, or somebody that is going to take on that role for you, because it’s really important.

Andrew:

So true. Now, Adrian, you have five kids, right?

Adrian:

Yes, that’s right. The youngest is 12 and the oldest is 22, so that’s quite a range.

Andrew:

How have you gone through this? I mean, you probably have an active family life. You’ve had hospitalizations, you’re going through FCR. So, talk about treatment, family life, support –

Adrian:

It’s funny, our family life becomes a little bit different. I had to have a word with my 12-year-old, to make sure he understood that words like cancer and hospital are not so normal. But a lot of other families, and a lot of other kids, and so he could really freak out his friends, perhaps, by talking about, “Oh yeah, my dad’s got cancer and he’s in the hospital again.”

It becomes almost a bit of a matter of fact when you go into hospital so many times in a short period of time. Sometimes I have to say to my children, “I’m going off to get an infusion,” and they’re like, “Oh are you staying in hospital tonight?” I said, “No, no. The plan is for me to come home.” So yeah, it becomes part of family life, to a certain extent. Obviously very difficult at the beginning, and I think sometimes very difficult as it goes on and on.

Actually, in many ways, watch and wait was almost harder than when I was being treated, because at least they see that there’s a problem, and that the doctors are doing something about it. It can be quite hard, I think, for family life to continue when one member is really struggling to keep up. Like on the holidays, for example, I sit in the car while they’re all climbing a hill, and all of those kinds of things. It is tough, but I think people are resilient, and I would certainly say that the support from my family and friends has been amazing really. 

But I would also say, I think for me personally, it’s been really important to get some support from outside the family as well, and actually professional support. So, for me, I certainly struggled a lot with adapting to the diagnosis, particularly during watch and wait, where you feel like you’re in a form of purgatory. Too sick to work, too sick to enjoy life, but not sick enough to need treatment. And so, that was hard to deal with, and I think my poor wife. You know, it’s important that I had another outlet to talk to about that.

Andrew:

Yeah, Esther and I did that as well. Jay, I want to ask you, so you, right now, are doing well, but you have – You live on Long Island, but you have a world-famous specialist in New York City that you check with. How do you think about the future, knowing that CLL can change or evolve? And so, diet exercise is working for you, but it may not always. No one knows. 

Jay:

I feel this way, we have to do some of the heavy lifting for our doctors, because they’re so well intentioned, and they can give us miracle drugs, but if we don’t do our part, the disease will just progress, I think, that much quicker. And if I ever needed, god forbid, to be treated, I would do it. And I think it has to be an integrated approach, using the best that modern medicine can offer, and I think we have to do our part. And I think too many people just kinda give up at the beginning. They say, “Uh-oh, this is cancer,” and they get paralyzed, like they’re caught in the headlights. So, I think CLL is a bully, and I do my best to bully it back, and I’ll keep doing it as long as I can.

I hope that I can get – I was hoping to get ten years of watch and wait, and so far it’s been a little bit less than four, and if I can do this forever, great, and if I can’t at least ill make my body so strong that, hopefully, when it comes time for treatment, Andrew, I’ll have enough strength to wind up surviving.

Andrew:

And Maggie, what about you? What if it gets to the point where your physician here in San Diego says, “You know, has changed, your white blood count is changing, you’re developing various symptoms. We can get lymph nodes and night sweats and things like that. And it’ll be time for treatment. Are you prepared for that?

Maggie:

I think mentally and emotionally, I’m fairly prepared for that. I’ve also tried to be as involved as I can in other – Leukemia Lymphoma Society, and the CLL Society, and listened to a lot of podcasts from CLL experts. 

And I have such faith and hope in what’s happening in trials and current treatments, that I know that at some time – my prognostic factors are probably five years, and I’m doing everything I can, similar to Jay, and trying to stay healthy and eat a healthy diet. But when it comes to that point in time, I’ll raise my hand for a trial or go on the most current medication.

Andrew:

Now Adrian, you mentioned that you had severely inflamed tonsils, where you almost couldn’t breathe, and you said that’s kind of an atypical result of CLL. And you’re a physician, so I’d love your perspective on this. CLL can affect different people in different ways. What do you do as far as communication with your healthcare team, trying to sort out what’s related to the CLL and what isn’t? What’s related to the medication you’ve had and what isn’t?

Adrian:

It’s tough, isn’t it? Actually, in that instance, I was unable to sleep because every time I started to sleep, my tonsils did completely block and choke me, so I had a fair few days of not being able to sleep. But when I was admitted to hospital, losing my airway essentially, there was quite a bit of debate, because the EMT doctors looked at me, and they said, “Those tonsils don’t really look that inflamed. They don’t look that angry. We think this is not a sort of tonsillitis-type picture. This is not something typical. This must be more of a hematological problem. The guy’s got cancer, give him some chemo.”

The hematologist came and they looked at me and they said, “Well, the thing is, it’s only really the tonsils growing. The other lymph nodes, I don’t think we could even feel at that point, although they did grow later on, and his lymphocyte count is really low. Actually, they did say, “Could this be a transformation? It could be high-grade. So, there was a whole lot of debate between even those in that situation, about whether to operate

And obviously they did try some steroids for a few days, and c they didn’t shrink, they had no choice but to go in and operate, so that I could swallow again, and breathe again more easily. But that kind of thing has happened on other occasions, and when you get an infection, would you have got it anyway? Perhaps not, with my pneumonia. I mean, that clearly seemed to be related to my CLL in the first place. And I guess for me, personally, I just got to the point of going, “Well, we don’t always know whether it’s directly related or not.

I’ve got back pain. I’ve got some benign tumors in my back. We thought maybe that was causing it. Or is it the CLL growing it the bones cause it, or is it something completely unrelated, just ligament damage, or discomfort from the fact that I’ve been lying around for two years really, not mobilizing enough, not doing exercises despite my physio’s best efforts to get me going. You know, I don’t know, and I guess at the end of the day, we just have to look at the symptoms, really. It becomes symptom management and investigation.

I think it’s very important not to ignore new symptoms, because you never know what’s going to happen. I’ve heard of people having infections in bones and all sorts of things. Whenever I get a new symptom, I have to go to my GP, or I go to my hematologist, and we go from there, really. We investigate and we figure out what’s going on, or try to, at least.

Andrew:

Well, I wanted to talk about that very good point. And Esther goes with me to the doctor, and she knows, I say, “Well, I’ve got these little dots on my skin. Is that related to the CLL, or whatever?” Some things they know, because I call if I have a chronic cough or certainly feel like I have a chest infection, but other things, I don’t always know, but I always bring it up. What about you, Jay? You apparently, were not feeling well for years.

Jay:

Yeah, well, the funny thing was, I thought I was doing great. I was 193 pounds of muscle. I studied the martial arts for 20 years. I felt great, but I was 50 pounds overweight, so you just don’t know.

I thought I felt fine. I thought that occasionally getting fatigue was part of getting older, but when it got to that point where I couldn’t walk around the block without gasping for air, sooner or later you figure something is wrong. And then you take action. But the truth is, we’d all be better off, I think, if we understood the cues our body is giving us, but I didn’t at the time.

Andrew:

Right, and often the indication for treatment, Maggie, you’ve had various blood tests, but from what the doctors are telling us now in our programs, is are you having night sweats? Is your spleen enlarged? Do you have lymph nodes? Maybe do you have these kinds of things that Adrian

[00:27:59]. Certainly, do you have pneumonia, or recurring pneumonia?

All these things could be indications of treatment, not just the number of your lymphocytes. So, it requires communication. So, do you have really good communication with your doctor now, Maggie, and you feel you have a trust relationship, and that gives you confidence?

Maggie:

I did when I first met with my CLL specialist, I thought, “Oh, it’ll be a 15-minute meeting.” He spent almost two hours with me and talked about everything that was going on for me. If I thought it was a symptom, we discussed it. For me, probably a month before I was diagnosed, I started to get really bad sinus headaches. And I talk to my intern about this. I said, “Could it be the CLL?” And she said, “No, no, that’s ridiculous.” And I talked to Doctor Choy and he said, “Very likely, since this is an inflammatory disease, and this can affect your sinuses and it can affect your respiratory system. Any place that you can carry inflammation in your body.

And I felt like he really listened, because he said, “Here, try these different over-the-counter remedies,” and it’s really, really helped me a lot. But I do prescribe talking to your doctor, telling him anything. And I’m at that age of a female where menopause happens and you get hot flashes, but mine have continued. I’m over 64 now, and I talked to my CLL specialist. He said, “These are probably CLL-related.” So, even though I would like them to be menopausal hot flashes, I do believe they’re CLL hot flashes. I don’t have the drenching night sweats, but I feel like there’s a furnace inside me that just kind of turns on, and it wakes me up at night.

So, I’m trying to deal with that. I keep my room, my poor husband, at around 60 degrees at night. I’ve got two fans pointed right at me, and it helps me get through the night. So, these symptoms are –

Andrew:

But you have that [inaudible – crosstalk] [00:31:18] with your doctor to try to figure out what could be related to the CLL, and at some point, maybe, part of the indication for treatment.

Maggie:

Exactly, and if these get too bad, I’ll say I’m ready.

Andrew:

Well, I’ve been living with CLL for a long time. I have a chronic cough sometimes, there you go. One of the things, though, that we were worried about, and Esther was part of these discussions, is sinus infections. And we were talking about sinuses a minute ago. And so, Dr. Kipps, who’s another doctor at UC San Diego, he said, first of all, you can be prone to infections with CLL, and in your sinuses, the bacteria can have what he called a pool party. 

So, what do you do about it? Do you just – antibiotics all the time? He said, “You should try a nasal wash, every day.”

Esther:

A netty pot.

Andrew:

A netty pot, or there’s some other ways. You can get a little squeeze ball.

Adrian:

Yeah, but this is a little bit more, sorry this is not supposed to be product placement, but this is a bit more pleasant than a netty pot. I just spray this. It’s a sort of A-line spray. I find that really, really good.

Andrew:

Right, and I have something similar, so I went to the local pharmacy. There’s a little bottle you can get, and you put little saline packets in it, and warm water, and it has a filter, and every morning, I do a nasal wash and guess what, no infections. Now, I’m doing other things, as well like I get immunoglobulin once a month, which my doctor thinks is important for me. But the point is, it’s what I can do, and it’s like what you can do Adrian. This is something we can do. We may be prone to nasal infections that could be respiratory infections, could be pneumonia, which is bad news for us with CLL. And you’ve had pneumonia, right, Adrian?

Adrian:

Yeah, that’s right, and throat infections, yes.

Andrew:

I’ve had it, too. So, this is serious business for us. So, these are things, whether it’s diet, whether it’s exercise, whether it’s communication about hot flashes, all of these things. And Esther, when I speak up about something, you normally say, “Call the clinic,” Right?

Esther:

Yes. And the calling the clinic is two-fold. One is, I agree completely with everything everybody said, the kind of thing that you’re doing, Jay, makes perfect sense. You’ve studied it. You’re taking an approach.

The only caution that I would give Andrew, and especially since I made a mistake early on of doing something we shouldn’t have done, is don’t take on some kind of a supplementary or what you think is a complementary remedy, because you’ve read about it, because five people said it works for the, That if you’re gonna take something on, at least discuss it with your doctor. So, I’ll just tell this quick story, when Andrew was first diagnosed, one of the things we did, besides finding a specialist, we went to a naturopath. Remember this, Andrew? And he said, “Oh, you need to take mega doses of,” I don’t know what it was, Vitamin A or D, it was one of the vitamins.

And then when he finally got to see the specialist at MD Anderson, he said, “So, what supplements are you taking?” and he said, “Well the one thing I am doing is, we’re juicing,” which was okay, “But I’m taking this mega dose of whatever.” And he said, “You know, I think you should probably stop that, because there’s studies that have recently come out that say that it could cause the proliferation of CLL cells. It was like “Eh.”

So, I just tell the story, because the kind of thing you’re doing, Jay, sounds like you’re done a lot of research. I’m assuming your physician knows about it. Those kinds of things are good, to compliment whatever else is going on, but to make sure that he’s on the same page about whether there’s some potential downside to it.

Jay:

Absolutely. I’ve gotten some – somehow, I’ve gotten some kind of notoriety, you know, and that’s not good or bad. But I’ve had an average of two emails or phone calls a week, people literally asking me, “What can I do?” So, I’m a year away from becoming a counselor, a macrobiotic counselor. So, I’ve been studying this for four years. So, I tell him, from a patient’s perspective, and some of the things they’re doing are just crazy.

And I literally say, “Look.” Always preface it with, “Discuss this with your CLL specialist. And if you are doing something, chart your results, and see, on a quarterly basis, how your liver function is doing. When I was first diagnosed, my liver was, my ALT was 92, which is 50 points too high. Within six months, it went down to 30, which was normal. I had diverticulosis. I had acid reflux disease. That’s all gone now. But it didn’t happen over night, and you do things gradually. And every step you take, you check with your doctor.

And candidly, I have a wonderful doctor. I don’t want to mention his name, because I don’t wanna – But he is the tops in my opinion. And he does not necessarily believe that what I’m doing is going to affect my CLL that much, but what he does like is the results. He likes seeing me healthy. He likes seeing my blood counts so good and stable, and I don’t expect a medical doctor to believe in the dogma that I believe in. I’m using that medical doctor for his knowledge, and it should be a collaborative-type thing.

Maggie:

That was my point, exactly. Thank you, Jay.

Andrew:

Well said, really well said. Okay, so, we have a medical doctor with us, who’s also – So, Adrian, this whole person thing. What can we do that makes sense for us, that’s not harmful, and how do we partner with our doctors? How do you view it?

Adrian:

Well, for me, personally, when I was diagnosed, I was pretty fat. And I think, as a middle-aged guy, I think quite a few of us have a spare tire. And I resolved, straight away, I was gonna lose that. And I did, and that wasn’t because of the CLL. We do have to be watchful about that. We don’t want to be losing weight excessively fast. 

So, I did change my diet, not as radically as Jay, but for me, I decided to cut down significantly on carbohydrates, and just to maybe do a little bit of intermittent fasting. And I managed, over a number of months, to lose the weight gradually. But what I would also do, was every now and then, I’d have a cheat week, just to make sure that if I lifted the foot off the accelerator of my diet, that I would actually regain the weight, because I didn’t want it to be misconstrued that it was my illness. But if you look at my weight chart over those 60 months of watch and wait, it was gradually going down in a nice, smooth, controlled way. But unfortunately, that didn’t seem to help, for me, personally. It does for some people, but it didn’t for me.

The other thing I tried to do was physio. I’ve been seeing a physio now, most weeks, sometimes twice a week, since November of 2018, because I had this awful sense of the decline in my mobility. I was using sticks as a 46, 47-year-old, and I still do. 

But the physio, I do think, helped a bit, and I think exercise definitely helps, but unfortunately, it’s kinda like there’s a weight pulling you down, and sometimes exercise isn’t enough. But I tell you what, when I was stuck in my hospital bed, unable to get out, this was in November, after my first FCR, unable to get out safely, it was my physio that taught me some bed-based exercises that I think helped me to get out. One of my doctors was saying, “You’re gonna end up in a nursing home, Adrian, if we’re not careful here,” because I was just so weak.

And I just did some very simple things, lifting my legs out of the bed, pushing my bottom off the bed, things like that. Things that my physio had taught me. And then, over a few weeks, I gradually started to regain my strength. And that’s where I am at the moment. My physio says to me now, I’m very badly deconditioned, from the last nearly two years now, of being ill. And I’ve got to gradually build myself up, not overdo it, not boom and bust, not do too much, so that I don’t do anything, but gradually try and regain my strength.

And that’s after treatment, but I think sometimes in watch and wait, if you can get as thin as you can, if you can get to an optimal weight, and if you are allergic to foods, certain foods seems to provoke your inflammation, then definitely cutting those out. All of those things, to me, seem to make perfect sense, again, provided you’re talking to your doctors about it.

Andrew:

Right. Boy, this is such great advice. So, Maggie, how are you staying in as good of shape as you could be, knowing that you may have treatment, but you’re trying to do what you can do? What are things you do?

Maggie:

Right, yeah, so I think, and I do believe it’s the CLL, I do get tired in the afternoons. There’s an exhaustion level that I kinda never felt before. I’ve always been extremely fit and extremely active, so I made sure that I try to exercise every day, but I do it first thing in the morning. I’m a master swimmer and I play golf a lot. I do a lot of walking.

And when I was first diagnosed, I did notice that my times were dropping, as a master swimmer. And so, no I’m just not pushing myself as hard. But I’m still in the pool, I’m still working out. I’m still saying, “Hey, you’ve gotta push yourself a little bit, but don’t overdo it. Don’t way overdo it.” So, I stay active and that’s really important in my life.

Andrew:

I’ll just say, pass on one thing. A British doctor, Adrian, who you may know, John Gribben, is one of the top CLL specialists. He said to me years ago, before I had FCR, and Esther and I would run every day, and I probably couldn’t run as far as fast. He said, “After you have treatment, you’re probably gonna feel a weight is lifted from you.” So, that’s what I did. I mean, I did many of the things you’re talking about, Jay, as far as diet, exercise, but in my case, when it came time for treatment, which was a high white count, swollen lymph nodes and enlarging spleen. 

When we knocked the CLL back, Maggie, I did feel I had more energy. And just a couple of other things I’d mention, we were talking, and you were great about it, Jay, saying what’s working for you, and what you’re studying. But everybody’s saying check with your doctor. Esther, do you remember when you read something online, not just about the juicing, but distilled water and we had distilled water, and we lived in Seattle, where Starbucks come from, and you said, “Stop drinking coffee.” And I stopped drinking coffee.

Esther:

Well, that speaks to what happens to a care partner. I have to be honest, mia culpa, I felt no control over what was happening to you. So, I started to read everything I could find, and at the time, there was a book called spontaneous healing. The gentleman who wrote it was very well known national and internationally. 

Seemed to make sense. None of it was super extreme but living in Seattle and not drinking coffee was pretty extreme. So, I had to learn along with you, Andrew, that you have to – there’s a balance. You can’t stop living. You can take an approach like Jay, which, for him, a disciplined, very disciplined approach to eating is working for him. For you and I, what seems to have been working is good, healthy diet, exercise, laughing a lot, travelling, doing those things. That’s working, seems to be, knock on wood, working for you. And as a result, I feel like we’re working together on this. Yeah, it’s like, there’s a point where you don’t want to stop living over it.

Andrew:

Right, right. One other point, I mentioned that I’ve had CLL treatment twice, although separated by 17 years. And Adrian, post-FCR, I hope you have a long, long remission.

But we’re blessed with some very modern treatments now, and that’ll probably be discussed with you, Maggie, and should you need it, you, too, Jay. Lots of new thinking and lots of research, and several of us go to doctors who are in the lab as well as in the clinic.

And so, I feel really confident that if we do what we can: diet, exercise, emotional well-being that you were referring to, specifically, Adrian. If we get our head on straight, and take back control, with our partner, Esther, or whoever it may be for you, that we’ll be in the strongest possible position to live a long, long life. Maggie, do you feel that way when you think about it now? You’ve watched all these podcasts and videos. Do you and your family feel you’re gonna be around for a long time?

Maggie:

Yeah, and I’ve always said that CLL [00:45:10] under the ground. So, I’m gonna be out there on the, you know, the fullest life, the happiest life, and just stay as active and engaged and involved, and like you said, laughter is really important through all of this. When I laugh, I totally forget that I have this CLL, and it works for me. So, that’s my path.

Andrew:

Okay, so for final comment, Jay, you’ve been living with this, doing what you can. What would you say to people, whether they’re newly diagnosed or wherever they are, what advice, knowing that people are different, and you’re gonna be a counselor too? So, tell us what words of wisdom you have.

Jay:

Words of wisdom is this: I said it earlier, you have to do, you have to take some responsibility for your general health. And I think it’s just really irrefutable, that if you do things like watch what you eat, you try not to be too stressed, you make an occasion to walk a few times a week, you’re just going to feel enabled. You’re going to feel healthy. And you can’t give up.

You have your CLL life, and you have your general health, and they can’t be separated. You can’t have one without – You can’t have good CLL health, I believe, unless your body is very strong. So, do the best you can and take it slowly, but every day, set a goal to do something that might make you feel healthier, might make you feel less depressed. Live life, enjoy life, but don’t equate taking personal action and responsibility for not enjoying your life. To the contrary, you’re helping yourself live a longer and healthier life. That’s what I would say. 

Andrew:

I’m just gonna tell you one quick story. Esther and I went jogging at the end of the day, and a woman probably in her 20s ran past us, and I started speeding up. We didn’t catch her, but I was running faster, and Esther said, “You’re running so fast today,” and at the end I said, it was affirming for me that I could do it. That I could chug along a little faster was affirming. It was something I could do in one day that helped me.

Jay:

Andrew, you look great, so I have to ask you, seriously, I haven’t made you crazy and put you on a special diet, but what do you do besides running?

Andrew:

Just running, and this afternoon is going to be going on a bike ride. And I’m gonna try to go up the hill over here. And then maybe get some coffee, Esther –

Adrian:

But hopefully, not a latte, Andre. No lattes, yeah? No lattes.

Esther:

We get them with soy. We get it with soy milk.

Adrian:

It’s the sugar. You don’t want the sugar in the latte syrup, you know?

Esther:

Right, right.

Andrew:

So, I do that, but I think it’s a matter of, after 23 years of CLL diagnosis, just live your life. You said it Jay. And Maggie, for you, you’re playing golf, you’re laughing. You picked yourself off the floor after the diagnosis. You have everybody try to understand as best they can, and you go be yourself. And Adrian, you too. You’re trying little by little, to get back to equilibrium, right?

Adrian:

No, that’s right, and it’s about looking at the positive things. I mean, I think we have to accept sometimes it’s gonna be negative stuff, but there’s also positive things. So I’d gotten to the point where every night I slept outside of a hospital was a real gift, at one point. And just, the ability to, I don’t know, cook a meal for the family was a huge step for me. Things like that. And being grateful for things, and, as you say, moving along that journey and hopefully, heading in the right direction rather than the wrong one is always, always positive.

Esther:

I think a lot of this, I’m listening to this, a lot of it is attitude. Jay, you asked Andrew what is he doing, and I watch him every day. And he’s just two steps ahead of everybody. He’s just positive attitude, and whatever’s gonna happen, he’s gonna take as much control as he can, he’s gonna rely on his support system and his doctors, and he just keeps moving ahead. And I think that makes a big difference.

Jay:

Yeah, and I think the fact that you two, Esther and Andrew, do so much to try to help people, I think all of us would agree that if we’re trying to help people, it’s a wonderful thing, and we feel blessed and empowered. So, as bad as CLL is, and I hate having this disease, I think it’s a real bully, in my opinion, I’ve become maybe a more understanding person. So, it’s not all negative, you know. It’s mostly negative, but there are some bright things about it.

Andrew:

There really are, and so I appreciate every day. Maggie, you’re at a beautiful golf resort, La Quinta, so you’re just gonna go swing away now, right?

Maggie:

Right, in about 15 minutes, I’m leaving for the tee box, so it’ll be fun.

Andrew:

Well, I wanna let – Just, thank you for being part of this CLL patient café. I wanna thank our supporters, ABVI and Pharmacyclics, who have had no control over anything we’ve said. This is very free-wheeling, but we hope it helps everybody. Maggie Buckenmayor, I want to wish you all the best with your golf game, and wherever your CLL journey takes you. And don’t freeze your husband out, with the fans and the cool temperature.

Adrian, all the best as you continue the FCR and just hopefully –

Adrian:

No, I’m done with CFR. I’ve had my six. That’s over, mate. No more for me. I’ve had my six. Never again. The UK will pay for the newer drugs for me the second time around, so if I need anything else, it will be one of the newer drugs.

Andrew:

All right. And so, may you go on and get your walking. You’re gonna be jogging with me and jay before long, okay?

Adrian:

I’ll do my best.

Jay Blatt:

You’re gonna be carrying us, he means.

Adrian:

I don’t know about that.

Andrew:

Jay, thank you so much and all the best with you, and I’m gonna read up more about what you were discussing. And Esther, thank you for being my partner all these years, and all the partners out there, wherever you are watching, thank you. You’re a blessing for all of us, and we really appreciate it.

Jay:

Thank you, Andrew and Esther and everybody else. 

Maggie:

Thank you guys.

Adrian:

Thank you guys.

Andrew:

I’m Andrew Schorr, from Patient Power. Thanks to the Patient Empowerment Network, for putting all this together, and thank to our sponsors for helping us, so we can do this. As I like to say, remember, knowledge can be the best medicine of all.

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.

A Yoga Technique to Increase Relaxation and Reduce Anxiety

Living Well with Lung Cancer – Mind-Body Medicine

During our Living Well with Lung Cancer webinar, certified Yoga Therapist Raquel Jex Forsgren walked us through a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.

You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.


Transcript:

Raquel Forsgren:

So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that.  And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.

Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels.  Just feel the body itself.  Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way.  Don’t analyze it.  Don’t go into any thinking other than just noticing.

Begin to expand your muscles in your ribs as you take your next inhale.  Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales.  And I want you to bring to mind one thing you’re really grateful for today.  One thing.  The next before we move on, bring to mind a goal, an intention.  It could be how you want to feel for the rest of the day, emotionally or physically.  How do you want to feel or what do you need?  Beautiful.

Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together.  We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.

So as you inhale just open your arms like an (? cast) or goal post.  And you’ll need to adjust this.  If you have had surgery along the central plate, take it nice and easy, just open, inhaling.  As you exhale bring your arms together, touching your palms together, elbows and forearms.  Inhale, open the arms again.  Exhale, closing the arms together.  Just take two more only moving with your own breath.  And closing.  One more time just like that, beautifully opening and relaxing.  And releasing the palms back down on your hands.

Close your eyes one more time.  I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted.  I just want you to notice.  And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done.  It’s published in the literature.

It’s called alternate nostril breathing.  You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off.  So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time.  And I want you to breathe normally and naturally, okay.  So this isn’t anything forced.

Close off the right nostril first, and just delicately push it.  You don’t have to push it clear into your nose.  Just delicately push it.  Exhale all the way out the left side of the nostril.  Then inhale through the left nostril, exhale out the right nostril.  Inhale through the right nostril, exhale out the right nostril.  We’re going to do three more of these.  Inhale through the left, exhale out the right.  Inhale through the right and exhale a little longer out the left.  One last time.  Inhale through the left and exhale longer out the right side.

Bring your hands back down to your lap and close your eyes again.  Take a nice normal, natural breath.  And I want you to notice what’s different in your breathing, if anything.  Just notice it.  Notice your heart beating.  Come back to that intention or that goal you set for yourself.  And softly blink open your eyes with a smile.  I’m expecting all of you watching to be smiling even though I can’t see you.  And Namaste.

Living Well With CLL

Interview with Patient Advocate, Jennifer Abraham

After her third cancer diagnosis of Chronic Lymphocytic Leukemia (CLL), Jennifer decided she and her family were going to make the most of everything. She says her life is better than it has ever been and has learn to just be and live. Jennifer considers her cancer diagnoses almost a blessing because it pushed her to do things she maybe wouldn’t have done. Check out the full video below to hear more from Jennifer.

 

Living Well WIth CLL from Patient Empowerment Network on Vimeo.

Coping With Anxiety and Depression

Patient advocate, Andrew Schorr, leads a panel discussion about different methods to cope with anxiety and depression through all the phases of a cancer journey. Jane Williams, MSN, RN, FNP, says one of the best ways is to communicate openly with your healthcare team and loved ones. Letting them know how you feel and what you need can lead to you feeling better. Remember that you’re not alone in your journey, and sharing your emotions can help you figure out what works best for you, whether that be running, meditating, etc. Watch the full video below for all the panel’s advice on coping with anxiety and depression.

Coping With Anxiety and Depression from Patient Empowerment Network on Vimeo.

Social Media in Hematology

Interview With Dr. Laura C. Michaelis (@lauracmichaelis), MD Clinician and Clinical Researcher at the Medical College of Wisconsin

In an interview with Dr. Laura Michaelis, she discusses how social media can be great tool to connect with other patients with the same disease.  Dr. Michaelis says social media has really revolutionized the way patients to patients, patients to doctors, and doctors to patients are communicating. Watch the full video below to hear the multitude of ways social media can benefit patients and doctors.

Social Media in Hematology from Patient Empowerment Network on Vimeo.

[accordion]
[toggle title=”Full Transcript Here” state=”closed”]

Andrew Schorr:

I just want to get a show of hands of something for a second. How many of you go on the internet to find information for your MPN? Most everybody. Okay. And one other one. How many of you have connected with other patients, like in social media where you’re somehow part of a discussion? Okay. I just want to talk about it and I know that actually Dr. Michaelis, you actually encourage people. This whole connection, Patient to Patient, you’re a big fan of.

Dr. Michaelis:  

Oh yes, absolutely. I actually think social media has really revolutionized the way that patient to patient communication happens, patient to doctor communication happens.

And doctor to patient communication happens. There’s actually a nice paper published out of MD Anderson recently that looked at hematologists and social media Twitter accounts and how people communicate that way. There’s going to be a talk at our national meeting, the American Society of Hematologists, teaching doctors how to use Twitter and use social media not only to talk to one another, but also to talk to patients and also move policy change; policy in certain conditions.

I know a lot of patients who have Facebook groups where they communicate with one another. That can be an invaluable source not only of information but also comradery to take the loneliness out of having a very rare disease where you don’t feel like anybody else knows what you’re going through. We’ve had little town meetings via Twitter where people share information or get communication that way.

I think the sky’s the limit the way that technology is going and how we really branch out from being in our own institutions and just talking to one another within that institution about caring for patients or moving the disease forward. And now we’re looking at a whole different level of communication.

Andrew:   

I’ll mention just a couple of resources for you. So first of all, if you happen to be in the PRM-151 trial, this is the queen of a Facebook group for that. And what’s been happening now is on Facebook, if you’re familiar with it, some people are forming pages and groups around the trial they’re in. it’s not the drug company; it’s not even the clinic. It’s the patients actually in the trial. It’s kind of cool, isn’t it? Yeah, it really is. And then a couple of other resources.

There’s one that started in England and is proliferating around the world called HealthUnlocked.com. The folks from England with MPNs, which was started by a peer of theirs, Dr. Claire Harrison in London, she helped working with patients start a group called MPN Voice.

Dr. Michaelis:   

Yes, one other thing. I would also recommend there is a national resource called ClinicalTrials.gov. This is available online. This is a completely updated list of clinical trials and you can search it by location or by center.

So if you’re getting your care in Akron, you can look at what clinical trials are available in Ohio, or what clinical trials are available 250 miles from me. And then you can search down by myelofibrosis or PV, etc. So I think that and the clinicaltrials.gov and the NCI also have good information on that.

[/toggle]
[/accordion]