Feeling Poorly and Living With Neck Cancer…

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

The past few days haven’t been great health-wise. I’ve been feeling really flu-like and have been spending a lot of time on the couch. It seems like, each time following treatment for my neck cancer, my muscles get really weaker, the tremors get worse, I get random startling muscle/body jerks, my joints feel really achy, I can’t think, headaches get worse and more consistent, I’m usually nauseous, my skin gets more sensitive, I’m more dizzy, get long periods of relentless neck spasms, etc. I often forget what I’m saying a few words into a sentence, but now I stop talking after one word, often unable to remember what I’m going to say at all. The tremors at the point where typing is much more difficult, and I can’t seem to put my cat’s food into a bowl without twitching and spilling it. Now that I think of it, the tremors aren’t as bad right now–just worse than they normally are. I’m constantly finding myself blankly–seemingly without a thing on my mind–staring at the screen for a long time before writing anything. I guess this is something that happens normally, but I definitely don’t think it’s usually this bad.

I would love to say what caused this post treatment episode, though I don’t think I can pin it down. It did seem to begin a day after my partner stayed over for two days. During those two days, we stayed up until 4 or 5AM and went on several walks. The thing is… I don’t crash like this every time I walk and/or stay up late. It isn’t consistent, no matter how much I wish it was. The causes of these episodes are probably a complicated mix of things that will take lots of time and energy to figure out–if I do ever figure them out. At this rate, it doesn’t feel like I will. Of course, this could explain why my depression might be getting worse with the intensity of my treatments over time, though it also seems to correlate with my brain feeling blank and sluggish. Plus I spend a lot of time on the couch.

That reminds me… The recent episodes of “neck spasms” (or whatever you call involuntary muscle clenching) are a main reason I’ve been lying down so much. It gets to the point where my neck is clenched for so long that I have a very hard time holding it up. So I end up having to lie down, but doing so doesn’t seem to help with the pain too much. My neck is still tightening to some extent, leaving me feeling like I’m constantly holding my head up, even when something else is supposed to be holding it up. I’ve tried a soft neck collar in order to try sitting up for longer. Can’t say that was too helpful either. I might try to find one that provides more support for the back of my neck because it seems like that’s what my current neck collar was missing. It’s to the point where I’m considering trying my hard neck brace again, even though it might’ve triggered a bad vertigo episode.

Oh, and when I get the flu-like symptoms, my acne and other skin issues seem to get worse. Coincidence?

On the bright side, I was able to get in a decent amount of food (kind of) despite being nauseous most of the day. I still needed to take two Zofran to get to that point, though. But hey, I’m grateful that I have it! When I was sitting up, I spent time playing Rust (a multiplayer survival game) with my partner. He was even able to convince me to play with some “friends” (in quotations because I’m not sure what they think of me), even though I protested the idea quite a bit. It was a bit stressful because the OCD-like symptoms started acting up, and I felt overwhelmed about not being able to do things like I used to. I also felt regretful after every time I talked, though my mind has a habit of forgetting many of the things I’m regretful of, so I’m not too upset about it now. I honestly can’t remember what happened or what I’ve done for most of the day. Definitely better than being overwhelmed, though, so I’m at least a little grateful for that and still hopeful I can beat this cancer!

Don’t Be An Egg Head! Ten Twitter Tips for Patient Advocates

Last month Twitter announced it is now possible to filter out accounts with the default (egg) profile image, so that they don’t appear in your notifications. While this change is part of the company’s efforts to deal with abuse on the platform, it is also a timely reminder to those Twitter users who still have accounts without a personal picture to add one.   It is still surprising to me the number of new (and not-so new) Twitter users who are tweeting from an account with no clearly identifiable name, bio, or profile picture.

Twitter is a powerful tool to help raise awareness of your cause, keep current with research, amplify your advocacy activities, and build collaborative relationships. A study published by researchers from Microsoft and Carnegie Mellon University, “Tweeting Is Believing? Understanding Microblog Credibility Perceptions,”  analyzed how users assess Twitter credibility. The study found that users represented by the default Twitter icon, or a cartoon avatar, are perceived as significantly less credible than users with a personal photo.

Patient advocates who are looking to change hearts and minds should consider the image they present online. What will people’s first impression be of you? What might make them decide to follow you? What kind of content should you tweet to engage your followers?  Whether you are a Twitter newbie, or you have been on Twitter for a while, these ten tips will help you develop your professional identity on social media.

1. Perfect Your Profile

The first and most fundamental thing to understand about Twitter is that it is a conversation. Would you approach someone at an event and not introduce yourself first? Would you keep your face hidden from view while you hold a conversation? And yet this is precisely what some users do when they set up their Twitter accounts. Many Twitter users will not follow accounts without a profile picture on the assumption it is a fake account, and now with these new changes it will be easier than ever to weed out these accounts.

Let’s start with your avatar. An avatar is something used to represent you in an online environment and on Twitter it is the small thumbnail picture that appears alongside your tweets in the feed.  Since the thumbnail is so small (400 x 400 pixels), choose an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo.

You also have an opportunity to personalize your profile by uploading a custom header image, similar to a Facebook cover photo.  Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message.

2. Craft Your Bio

Trying to capture your passion and experience in Twitter’s 160 character limit for a bio is a challenge.  You won’t be able to express all you want to say, so think of this as a snapshot of who you are and what you do.  How will you describe yourself to pique people’s interest to learn more about your work?  Which of your accomplishments will you highlight? Is there a project you are currently working on? Or a campaign you are part of?  Use campaign hashtags, and link to other relevant Twitter accounts to highlight your online community.

Bonus Tip: When writing your professional bio, be brief but authentic, and make your core expertise and experience immediately clear.

3. Find People to Follow

Begin by following your organization’s Twitter account. Twitter will then auto-suggest people who also follow this account for you. Next draw up a list of organizations and groups related to your area of interest. Go to their website and click on the Twitter follow button if they have one. When reading blogs written by other patients check to see if they have included their Twitter profile.

Follow healthcare professionals, researchers and patient advocates who are tweeting about issues related to your illness. The easiest way to find conversations of interest is to click the native search facility at the top of your Twitter screen and enter your keyword or hashtag (words or phrases prefixed with a “#” sign).  You then have a further option of performing an Advanced Search. This allows you to narrow down your search using parameters such as specific keywords, language, people, location, and date range.

Bonus Tip: It’s a good idea to organize your followers into lists. You can create your own lists or subscribe to lists created by others. I use a tool called Listly to curate healthcare lists – you can view my epatient list here.

4. Engage Your Followers

The more people who follow you, the more you can amplify your content and increase your social shares.  As you attract followers to your account you will need to think about how you are going to keep them engaged over the long term.  How will you maintain trust and credibility and give people a compelling reason to keep following you? Take the time to acknowledge when a person follows you online or re-shares your content.  Keep your eyes open for those who retweet you often or share your blog.  Thank them sincerely for sharing your content. Show your followers you are interested in their tweets too by retweeting and favoriting their updates.

5. Share Interesting Content

If you want people to share your content, you need to give them something worth sharing. The New York Times did a fascinating study on the psychology of social sharing a few years ago. It showed that people want to connect to other like-minded people, they want to support issues they care about, and above all they want to share content that will be useful for those in their network. Create content that your audience will want to share because they believe it will be of value or interest to others. Don’t just add to the online chatter. Before you post something, stop and ask yourself would this pass the re-share test? Why would I want to click on this information? Would I want to share it with my friends/family?

6. Use Hashtags Wisely

A hashtag on Twitter is a very popular way of creating and monitoring a conversation around a particular topic and can be a great way to engage your followers. To create a hashtag, simply place # before a word.  Twitter’s own research into hashtags shows that there is significant advantage to using them. Individuals can see a marked increase in engagement simply by using hashtags. A word of warning though – when #you use #too #many #hashtags your #tweet looks like #spam. Don’t use more than 2 hashtags per tweet. Research shows that tweets with more than two hashtags actually see a drop in engagement.

7. Live Tweet

A great way to add value for your community is to live tweet from conferences and events. Twitter is fantastic for taking the content of conferences beyond the walls of a conference venue. You can follow along on Twitter using the conference hashtag and share your insights and key highlights with your followers who cannot be there.

Curate the tweets from the event using Storify – a tool which gathers social media updates and media from across the web to build a social story. You can also notify people that their tweets have been curated in the Storify – which is a great way to publicly recognise your followers and attract new followers.

Bonus Tip: If you’re new to Storify, check out my step-by-step guide to creating your first story.

8. Develop a Regular Posting Schedule

In order to stay in front of your audience’s eyes you need to post consistently. Create a social media calendar using a simple Excel spread sheet so you can map out in advance upcoming holidays and cause awareness days to tweet about. When you have created your calendar, you can use a Twitter scheduling tool, like HootSuite, Buffer or Tweetdeck to schedule your tweets in advance. The internet is global and if you want the spread of your content to reach further than your own backyard, you need to hit multiple time zones. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Bonus Tip: Follow this link to learn more about this tip and download a social media posting calendar.

9. Join a Twitter Chat

A Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. In addition you will find past transcripts of chats on the website. This is also a useful resource to find Twitter users to follow.

Bonus Tip: It’s good Twitter etiquette to let your followers know your tweet volume is about to increase as you join the chat.

10. Have Fun!

If you’re new to Twitter you might be feeling a bit overwhelmed at all this advice. Remember you don’t have to do everything right away. Go slowly at first. Take one of these tips each week and put them into action.  Soon you’ll find you are becoming a Twitter pro, ready to teach others the tips and tricks you have perfected. Above all, have fun with Twitter. It’s a super place to network and learn, but it’s also a fun place to make new friends.

Epigenetics

Why your cancer-creating habits can affect your children (and we’re not talking about second-hand smoke).

It’s hard enough being a parent.  There are no “Parenting for Idiots” books out there.  We just bumble along, trying our best to inoculate our children from our worst selves and influence them with our best.

But like many humans, we may hit the potato chips a bit hard, make exercise the last task on our ever-lengthening “to do” list, and find ourselves doing things we know may not be good for us.

But the science of epigenetics is now telling us that we’re not only influencing our own health but those of our children – genetically.

Here’s how it works.  Epigenetics looks at the way genes express or don’t express themselves as we age.  Those gene changes are thought to be influenced directly as a result of our nutrition and behavior, as well as exposure to toxins in our environment.  In a sense, it’s a hybrid of hereditary disease and lifestyle choices.

An experimental study was done by Stanford University scientist Anne Brunet and colleagues. They noticed that nematodes (a type of worm) had varying lifespans.  Some were exceptionally long-lived and passed that trait through three generations.  Others lived much shorter lives. Yet all the worms, both the old sages and the early departers, were genetically identical.

How is this possible?

The answer lies in epigenetics.  Some of the worms had experienced a change during their lifetimes that affected certain gene expressions that regulated lifespan.  They passed that gene expression through reproduction, even though it had not been part of their initial DNA makeup.

A human version of this can be found in the cases involving the synthetic estrogen compound  diethylstilbestrol (DES).  This was given to women in the 1950’s to prevent miscarriages.  Later it was discovered that DES mothers gave birth to DES affected daughters, increasing their risks for vaginal, breast, and ovarian cancers. Ironically, it also made DES daughters more prone to miscarriage.  The mechanism for this phenomenon is now believed to be epigenetics which facilitated the altered maternal DNA to be passed down to their daughters.

It must be noted the study of epigenetics is in its infancy.  Clear-cut examples of it, like noted above, are rare.  But scientists now have a new understanding that our lifestyle choices and exposure to environmental toxins can affect sperm and egg DNA, and thereby set up new generations for cancer risk in ways that cannot be explained through traditional genetic pathways.


Sources:

https://blogs.scientificamerican.com/guest-blog/epigenetics-a-turning-point-in-our-understanding-of-heredity/

http://www.bu.edu/news/2014/09/15/epigenetic-drugs-a-hope-to-treat-cancer-resistance-and-reduce-cancer-relapse/

Moods of Oral Cancer…A Patient’s Journey

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

 

I’ve been even deeper in dissociation than usual lately. Normally, I have a habit of walking through life with a general sense of disconnection, forgetting most events, even some important ones. But lately–within the past few days I think–things have been a bit worse. I’m often feeling dizzy, having trouble translating talking into words, hearing everyday noises “echoing,” having a hard time making myself communicate with proper human body language and tone of voice, etc. I also feel even more dreamlike and can’t get my eyes to focus on anything for long. Pretty sure my depression linked to a life of living with oral cancer has something to do with it all, especially because I often feel like I lack the energy to act normally.

I think I remember feeling angry and invisible earlier today, but I can’t remember exactly why. I’m not sure if I want to remember. I can’t stand the idea of having to be reminded of recent events I should remember, but I don’t know if I could handle knowing them. It just might be too much.

I got the usual restlessness and anxiety when I got home today. It felt like I needed something to happen–and fast–though I couldn’t work up the courage to talk to my “friends.” And I don’t know why I have to put “friends” in parentheses. These people haven’t done anything wrong, and I’ve known them for years. I think I’m just so scared to get close to them and become my idea of their friend. I want to be able to run away when I start to care about what they think too much, and that’s not what people usually consider as friendship. “Friend” means commitment. “Friend” means deep caring and consideration. Those are things I can’t really handle right now, especially because of how often I slip up and how devastated I get when I do feel like I slip up. Those two things don’t mix well.

I guess I also don’t think they consider me as a “friend.” And my brain seems to think that being the only one in a relationship that considers the other person as a friend is annoying. I already feel so annoying and I blame my cancer diagnosis most for the loss of friends in my life.

I probably just overthink the meaning of friendship. After all, I’ve been told that several times. Even so, I’m still scared of intimacy and commitment and what people think, so the idea of friendship feels really overwhelming. I’m already overwhelmed enough.

Anyway, since I felt the need for something exciting/different to happen, I ended up playing a game with those people. The idea was scary, though, but I couldn’t think of another option, so I ended up taking Xanax before doing so. I think it helped a little, though the only person I had the courage to call was my partner (basically my safe person). I ended up feeling doomed about something that happened that night, though I can’t really remember what it was. Of course, the emotions I felt were expressed as anger at and avoidance of my partner, meaning he had to put up with even more drama. (He has to deal with this at least once a day…) Eventually, thanks to his help, I calmed down some. Really wish he didn’t have to be the one dealing with this every time, though.

Later that night, I think we messed around, and I was able to relax. I even felt like I was snapping out of that disassociation feeling a little – I truly don’t want to associate myself or my life with cancer, but I do. I want to be able to laugh and joke around at the end, but I’m slowly “disconnecting “more and more as time goes by, though. Xanax seems to do that sometimes. I’ll calm down some, but then I remember I have cancer and my life is not the same.  I’m pretty sure I got really emotional over at least one small thing today, though I can’t remember what it was. Cancer sucks – especially my cancer.

Living Well with MPNs – Strategies for Getting the Best Care

Managing Life with an MPN: Strategies for Getting the Best Care

In this “Living Well With MPNs” webinar, our expert panel featuring Dr. Laura Michaelis from the Medical College of Wisconsin, nurse Erin Blackwell from Levine Cancer Institute, as well as patient advocate Beth Probert, discussed managing life with a myeloproliferative neoplasm (MPN). The panel shared advice for finding a specialist, making informed decisions about treatment and monitoring progress of the disease through testing and check-ups. Tune-in now to hear tips for living well from the perspective of patients and healthcare providers.


Transcript:

Andrew:                                  

Hello and welcome to this program, “Managing Life with an MPN; Strategies for Getting the Best Care.” I’m Andrew Schorr in Carlsbad, California and living with an MPN, myelofibrosis. The Living Well series is a Patient Empowerment [Network] program produced by Patient Power, and we thank Incyte Corporation for their support for this series. We’ll be doing several programs during the year so be sure to be signed up with our alerts and you’ll always know as we continue.

We have some great people with us today around the country. I’m in Southern California, northern San Diego County. Now let’s go to Milwaukee, and I want to connect with our friend Dr. Laura Michaelis, who is at the Medical College of Wisconsin. Laura, thank you for being with us on Patient Power and our Patient Empowerment program today.

Dr. Michaelis:       

Absolutely, I’m pleased to be here. I wish our weather was as good as yours must be.

Andrew:     

Yeah, it is nice. And also I should mention Dr. Michaelis is dealing with a cold, so if she sounds a little stuffy, doctors get sick, too. But thank you for being with us. Now let’s skip down to Charlotte, North Carolina and the Levine Cancer Institute and that is Erin Blackwell. Erin works with Dr. Michael Grunwald who we know well there. Erin, thank you so much for being with us in Charlotte today.

Erin:   

Thank you for having me.

Andrew:                                  

Erin of course deals with Dr. Grunwald with leukemia patients and myeloproliferative condition patients all the time, and won an MPN Heroes Award this past year at the American Society of Hematology meeting for her dedication. Okay, let’s go back to California. Beth Probert is with us from Oxnard, California. Beth is a PV patient and she is just north of LA in Oxnard. Beth, thank you for joining us.

Beth:   

Thank you so much for inviting me to the panel.

Andrew:    

Beth, let’s talk about your story just for a minute. And that is you’ve been living with PV for what, about a year or so, now and you’re 55?

Beth:     

That’s right; just about a year.

Andrew:     

Okay, how did that diagnosis happen?

Beth:  

Well, it was a little crazy. It was during a very challenging time of my life.

I was dealing with my daughter’s mystery illness and sort of forgot about myself, and finally went to have a CBC with a new primary physician. Somehow, a gynecologist – I was visiting a day before I was to get the results from my physician – had those results, and he saw them and freaked out, and pretty much told me to get my affairs in order.

Andrew:        

That is scary for you. So who told you that you had this fairly rare condition, polycythemia vera; where did that come from?

Beth:                                         

Well, the gynecologist hinted at it and of course I fled his office and got my primary care physician on the phone. She called me down a little bit, told me to come in the next day and she suspected that it was that diagnoses but then arranged for me to meet with a specialist, which happened a few days later. So I had those few days of just pure panic.

Andrew:                                  

Now, you subsequently connected with Dr. Ilene Weitz at University of Southern California, the Norris Cancer Center in LA. That’s worked out for you.

Beth:                                         

It’s been fabulous. I went there; it was a fairly long drive and I was telling myself I’ll get a second opinion and a third opinion until I find the right doctor, and I was lucky to find the right doctor.

Andrew:

We’re going to come back to how you communicate with your doctor and a little bit about the treatment you receive and how it’s working. But the thing is, you’re doing well now with the right healthcare team. You’re at peace, I guess, with your diagnosis; you’re going on with your life.

Beth:                                         

That’s absolutely correct, Andrew.

Andrew:                                  

Okay, so Dr. Michaelis, that’s where we want to get everybody to is connect with the right team and doing well with modern medicine. So first of all, she mentioned about connecting with a specialist. You’re a specialist.

There are not that many doctors who see MPNs. Is seeing a specialist, at least having a consultation, knowing what you know about the field today, is that important? You’re muted, Laura. Hit the mute. There you go.

Dr. Michaelis:                      

Sorry about that. I would absolutely say yes, at some point early on seeing a specialist is important. One of the things is Beth’s story isn’t that unusual. The findings in a CBC of something that seems very off, whether or not it’s a very high platelet count, a very high hemoglobin or hematocrit can be pretty unusual for some doctors to see and know how to deal with. Sometimes they respond relatively drastically when that’s not necessary.

I think one of the best parts about a specialist is you’re seeing somebody who’s seen multiple patients with your presentation, with your symptoms, who knows when to be alarmed and when not to be alarmed. So Beth did exactly the right thing, which was make sure she then grounded herself with her primary care doctor, and I’ll say most of the patients that get referred to me are either referred to me by a primary care doctor, or sometimes by a specialist who might be a hematologist/oncologist.

But this is a rare condition even among people who see heme and oncology, so sometimes a hematologist/oncologist will want them to see me because I see this very routinely, and have seen patients at all edges of the spectrum.

Andrew:                                  

Of course then as we talk about MPN, so everybody’s straight on this and some people may be new to it; talking about ET, essential thrombocythemia, polycythemia vera, which is Beth’s situation; and myelofibrosis, which has been my diagnosis since 2011.

In this program, we’re not going to really get into treatments and genomics and all of that. We’re really going to talk about how do you live well and get the best care. And it’s not just your relationship with the doctor. So, Erin, let’s talk about that. You work hand in hand with Dr. Grunwald. You’re part of the leukemia doctors there and the doctors dealing with blood cancer. The nurse plays a key role, and that’s part of the dialogue, right? And you’re specialized.

Erin:

I think so. I think it’s a very different role than the provider, but we are healthcare providers also so we get to nurture the patients in a little bit different way. We’re not diagnosing but I think we’ve spoken about this before; patients usually have a very good relationship with their provider but they tend to open up to the nurse or the person that they get close to, which oftentimes will be in the office setting, the nurse.

So I think I’m able to glean information that the provider didn’t about symptoms that they’re having, that maybe they didn’t share with the provider; medication issues that didn’t come up.

So I think our relationship – and I’m the bridge, is sort of how I phrase it to patients. They can always go through me to get to the provider. If they’re not sure they need to contact the provider; I’m sort of the middle man.

Andrew:

Let’s start at the beginning. Beth, when you’re OB/GYN was freaking out if you will; did you see those blood test results and see how abnormal they were?

Beth:                                         

I absolutely did, and I was joking with you earlier that not only did I see some highs on there; I saw “critical” written next to several of those results. So that was extremely alarming.

Andrew:                                  

Dr. Michaelis, most of us with any of these conditions see Hs and Ls and critical that she saw; notations from the lab. What does that mean to you?

Because we start freaking out until we learn more.

Dr. Michaelis:                      

Of course it’s important to remember that when somebody comes up with what is normal, it’s done by having let’s say 1,000 people go to the hospital, have their blood drawn, and then a bell curve is written as this is what the normal hemoglobin is. What’s important is not so much if somebody is one or two points outside of the edges of that; it’s important; what it is relative to Beth. So for example, if Beth starts at a given level and then over time, her disease gets under control, she may still be slightly high or slightly low in some zones.

But relative to her, the disease is getting better. So we don’t really pay attention to the highs or lows very much; that’s against a huge, general population. What I’m really interested in is what do Beth’s labs look like compared to where they should be, or what it would mean if her disease was well controlled.

Andrew:                                  

So you deal with that, too, Erin, is people have a test and they’re alarmed. You often have to, as I say, bring people back down to earth, right?

Erin:                                           

Yes, and unfortunately when we print labs for patients, it actually will print out “high, low, critical” so patients do become frightened. We have a really neat tool on our computer system where we can graph counts over time. So I can show you from last year where you’ve started and where you’ve come to, so you can see the improvement, hopefully, and at times not improvement. That seems to calm nerves.

Andrew:                                  

That does it for me. So okay, Beth, you started seeing a specialist and then you had a certain rhythm of visits now that you’ve had over the last year. How often do you go see Dr. Weitz?

Beth:                                         

I see Dr. Weitz now about every six weeks. At the [00:20:00] onset it was every two weeks and four weeks. But because I am doing much better, it’s now six weeks.

Andrew:                                  

Right, and we should mention in your case, your one of the folks with PV who is on an interferon. The dose has been adjusted but it’s working well for you.

Beth:                                         

It’s working very well.

Andrew:                                  

Okay, so Dr. Michaelis, let’s talk about how you establish a treatment plan. So we come in, you confirm the diagnosis, we have some tests. So, how does that dialogue go about not specific treatments but how do you establish a plan?

Dr. Michaelis:                      

That’s something I’ve learned as I’ve matured as a doctor, and I feel it’s something I’m getting – I hope to get better at. I start everybody by talking about what is the cause or what do we think the causes of the disease are. I think it’s helpful for people to understand the way the disease develops, what are the underlying levers and changes in the bone marrow.

And then we talk about 1) have we truly confirmed the diagnosis? Do we have all the tests we need? Once we get through step one, which is confirming the diagnosis, we then go through something called risk stratification. Risk stratification means that we look at what does the disease look like, what are the characteristics of the disease. Are there high risk characteristics or low risk characteristics?

We then look at the patient’s own medical history; their age, their other health issues, their what we call comorbidities; the other things they may be struggling with. And the combination of those two help me determine what’s the likelihood of something bad happening because of the disease, or how the disease interacts with the patient. Once we have that risk stratification, then I like to talk about goals. What are this patient’s goals? Some people want to do everything they can to eradicate a disease.

Some people, their important values are their quality of life or being at home with their families. I try and listen to their values and what’s important to them, and then with that, we think about this is the risk the disease poses. These are the goals that you have; what is our panel of options out here? What kind of arrows do we have in our quiver, and how should we choose that treatment based on what we can accomplish, what you want to accomplish, and what we ought to accomplish.

That ‘s the kind of dialogue, and I find that that conversation, not the one where you’re first diagnosed, but that conversation of the first discussion of should we start treatment, that’s one of my longest conversations. So I prep patients; this might be a conversation where you want to bring family members. This might be an appointment we’re going to make as a double length because it’s going to be a little bit longer. Sometimes we’ll have patients bring their iPhone or something so they can have other family members conference in.

But that decision about starting treatment and which treatment to go for and why is an important one. And finally, we end it all by what should we see if it’s working. So how are we going to measure that this treatment is working for you? What are the types of things we’re going to see, and when? And when will we know when it’s not working?

So I like to lay it out with saying have we gotten the diagnosis, do we have appropriate risk stratification, have we identified your goals, and what kind of treatments are out there that could accomplish your goals.

Andrew:                                  

I was living in Charlotte for awhile so I went to Erin’s clinic and to see Erin and Dr. Grunwald. We would talk at each visit based on what Dr. Michaelis was just saying: how am I doing, how’s it going; bout a frequency visit. Sometimes I’ve had doctors say to me, when do you want to come back? Then I’d say doctor, when do you think?

Well, I think you should come back in three months. Sounds good to me, or should I come back sooner? Erin, you’ve been part of those conversations about frequency of visits. How do you as a team determine that with the patient?

Erin:                                           

I think it’s really; again as Dr. Michaelis was referring to, it’s a conversation had by the physician, the provider; what they’re comfortable with versus what the patient is comfortable with. At times, it’s that the patient would like to be seen more frequently than they really need to be for their comfort and their peace of mind. And the physicians usually are okay with that.

Then there are times when they want to go six months without follow up, and obviously with a lot of our patients, unless they’re just doing very, very well, that’s not feasible or responsible. So it’s always a conversation and I’m the one to make their follow up appointments and to give that to them when they’ll leave. So I’ll be the last line if they have an issue with it; they let me know.

Andrew:                                  

Beth, how often do you go? How often do you see Dr. Weitz?

Beth:                                         

Now I’m seeing Dr. Weitz every six weeks, and I really took to heart what Dr. Michaelis and Erin just spoke about because it’s the process I went through. What makes it very comfortable for me now to go every six weeks, I know whenever I have a question I can reach out to Dr. Weitz through the portal email. And it’s amazing; she gets right back to me. So it helps bridge that time going from two weeks, then to four weeks, and now it’s six weeks. I don’t feel alone. I don’t feel like it’s too long because I know I could reach out to her and her support team, as well.

Andrew:                                  

Okay, let’s talk about phone calls and emails. Dr. Michaelis, are patients able to call you? Do you communicate either directly via email sometimes or through the portal that maybe your institution has – many have it; I have it at UCSD here – about visits or connection, if you will, or questions with you or your team when you’re not physically there; when the patient is not physically there?

Dr. Michaelis:                      

Absolutely. One of the technologies that is possible now because of these electronic medical records allows what we call asynchronous communication. So you wake up in the morning and you’re much itchier than you’re used to, or you have a rash, you email me. You don’t have to reach me at that exact moment in time, but I will see it. My nurse sometimes screens it, and if it’s something she thinks is more urgent she’ll walk it over to my office or she’ll page me.

If it’s something that can wait, there’s a given period in the day when I take a look at the messages that have come in, that I’ve set aside and I’ll respond to them. Sometimes a patient wants to talk by phone, which is great. And that, I always ask them leave me a time that’s a good time to talk to you; best for me after 4, before 6. And that’s a time when I tend to be able to communicate with patients. I think one of the key elements is to remember, these are not for something urgent.

If you have chest pain, if you have severe shortness of breath, if your leg gets suddenly swollen; don’t expect these emails through the electronic medical record to be that timely because it’s often something that’s done as a routine part of the day but not urgently. Those should be done by a page, and everybody should have a way to page your doctor or their nurse through a triage system. Or, if it’s a real emergency, of course go to the ER or call 9-1-1.

One of the other things I do is I give my patients a stack of cards. Because if they’re being seen in an emergency room or somewhere, I want them to give my card to that doctor and ay: this is my hematologist, I have a rare blood condition; please page her. That’s because sometimes folks live far away from me, and so if they’re up in the upper peninsula of Michigan or skiing somewhere and they have an emergency; their bleeding risks, their clotting risks are unique.

I want people who aren’t familiar with this kind of blood condition to be able to call me any time and I can say this person has PV, they’re on a low dose of hydroxyurea; these are the things you need to watch out for. If the person needs to go to surgery emergently, this is what needs to happen afterwards. So I always have my patients carry a stack of cards to distribute. And I say don’t assume any physician knows about this condition; please have them contact me.

Andrew:   

That’s a very cool idea. I hadn’t thought about that and they hadn’t told me that at UC San Diego where I go. So, now we’re going into travel season, Erin. So people may go far afield. Esther and I are actually going on a business trip to Europe; hopefully everything will be just peachy fine. So talk to me about travel.

People have anxiety with illness when we travel, and if we have a wonderful relationship with you or Dr. Michaelis, or Beth has with Dr Weitz in Los Angeles, when we get away from that tether it can be a little anxiety-producing. What do you say to people about travel, particularly as we’re looking at the travel summer season?

Erin:                                           

It’s usually a conversation at the appointment. If our patients are going to go out of town for any reason, there’s a risk of interrupting treatment or they need labs while they’re away; that’s something we can help them set up. We have a patient currently that travels to Florida every other week and is on treatment. So we worked with an institute in Florida to sort of split care. So it’s a conversation that needs to be have. And I think fortunately, our patients have direct access to us almost 24/7.

We have an Access Center that takes calls 24/7, and during the day will reach a nurse; at night a physician covers. They always have my email address, my direct phone number at my desk. So, we try to make ourselves very reachable, so if something does come up –

But as Dr. Michaelis was saying, if anything urgent and life threatening comes up; call us later and go to the ER first, that sort of thing. We reiterate those messages.

Andrew:

I’m going to come back to you in a second, Beth. Well, Beth, let me ask you this while I’m thinking about it. From the patient point of view, like I don’t know what your travel plans are. You’re giving yourself interferon shots. Do you worry about travel at all because of PV? How do you plan your life? Because you have your doctor visits, you’re giving yourself shots. How do you plan your life, and do you worry about disrupting that plan at all?

Beth:

You know, on the onset I absolutely did. When everything is running your mind, and at the time I was traveling more. So my doctor actually talked to me about if I do need to take it with me, that the airlines, you know, what they require. And she urged me to check the airlines that I typically travel to get the instructions; does it need to be refrigerated, what are the security risks?

So, I sorted that out when I first went on the medication. I was doing a little traveling for business. And of course now that I’m on an every other week dose, it does make it quite easier. But I do urge PV patients to figure that out in advance, even if it’s just a slight – Maybe it might happen, maybe it might not but to be prepared in advance is something so important. So I did check that all out.

Andrew:

Laura, you were talking about eventualities that come up for patients and the communication among doctors. For instance, I have minor surgery that I’m trying to have happen. And so in my case as a myelofibrosis patient, I have lower platelets. And so I’ve got the surgeons talking to my hematologist/oncologist and they’re going to be prepared with platelets for the surgery so I can have the surgery; they feel it’s safe.

But they planned for it and they’re all talking, and that’s the kind of thing we need to ensure is happening, right?

Dr. Michaelis:

Oh my gosh, yes. I think communication between physicians is absolutely essential in this, especially when a procedure is elective. That means there’s time. Elective is a term we use when something can be done and planned in advance instead of emergently. We do know that when patients with PV, for example, go to surgery and their hemoglobin is very high, their risk of clots after the surgery or even problems within the surgery with the anesthesia can be higher.

So you want to make sure you’re going in – to the best of your ability, you’re going in with your blood counts well controlled and under optimal management. Same with platelet counts, which elevated platelet counts after surgery, can sometimes be a problem.

The other thing is that when your doctors communicate, it means that there’s a transfer of information, there’s a transfer of knowledge. And so that surgeon, when they go to see you and does his post-operation visit, it’s going to remind him: oh yeah, this patient has that rare condition; maybe I should call that doctor and just update them, for example.

So starting that communication early and that transfer o f knowledge is not only good for you, but makes sure that there’s a sort of routine – there’s a routine collaboration on a complicated patient.

Andrew:

So Erin, what do you tell your patients so that they get everybody working together? You try to do it within the hematology area, but somebody might have diabetes, somebody might have heart issues, somebody might have whatever surgery, procedures coming up. So how do you counsel people so that you know what this condition is, that we’re living with this hematologic condition is understood and proper communication happens?

Erin:

Similarly to Dr. Michaelis, Dr. Grunwald and Dr. Gerber both give out their cards to every patient that comes to the door. They hold onto it and they know if they see another provider and there are ever questions, that they can give them the card or give them their information. Something we don’t think about all the time when we’re treating these patients with either acute leukemia or myeloproliferative neoplasms in this case, they oftentimes have comorbidities or other things going on that we have to also address and make sure they’re staying – if they do have databases, we’re monitoring their A1C and their sugars are controlled.

And just because they have this diagnosis in myelofibrosis, that they’re not forgetting to take care of the other parts of their bodies. We need all parts to work, so I think it’s really important when I see patients – I look over their labs and their vital signs and make sure we’re addressing the things that sometimes we accidentally tuck away, like if a patient’s blood pressure has been continually high and we’re not addressing, or if their sugars have been high and we haven’t checked an A1C.

I think the best thing we can do is educate patients to know those sorts of things and to know what to look for so they can be advocates for themselves. But I think it’s also important that we all are mindful of the different parts of the patient because most of our patients are pretty complicated. There’s not just one thing going on.

Andrew:

Right. I have a question for you, Dr. Michaelis. So frequency visits, just to go back to that, if you want to see me more often does that mean things are not going well and I should start – my blood pressure should go up and – you know?

Dr. Michaelis:

Not always. Certainly if I get worried about a patient, my solution to that is to pay more attention. So sometimes if I’m worried that somebody’s disease is progressing, I will see them more frequently. But more often, when I see somebody more frequently it’s because we’ve had a turn in the road.

It might be a change from hydrea to interferon. We might have changed the dose of interferon a little bit. I might be worried about –. Maybe it’s the time of year, for example flu season. A lot of patients in the fall, we have a lot more hospitalizations with all leukemia patients and also some MPN patients. So sometimes it’s just that – I usually, like Beth’s experience and Erin’s experience, the frequency of visits is often a conversation. I’m not somebody who can go to long without seeing my patients. I want to keep them close so that I monitor them.

But if somebody is getting labs, they live in the upper peninsula of Michigan, they’re getting labs every six weeks and seeing me every 12; that’s fine and just keep up with that.

Andrew:

Right. I want to mention to our audience, so we have time for your questions so send them to MPN@PatientPower.info. We’ll get to the ones we can today, and we’ll be doing a whole series of these programs and so we’ll just keep making sure that we cover what’s important to you. I want to mention in my case as a myelofibrosis patient, that Dr. Jamieson down here in San Diego, she has me go to one of their clinics within the UCSD system and get monthly labs. And then if there’s something she’s concerned about, they let me know. But otherwise, I’m on a three- or four-month schedule, whatever it may be.

Okay, let’s move on to some other things. We talked about the treatment plan, Dr. Michaelis; you talked about that. One of the things that can come up in treatment planning now today is hopefully we have a situation that continues to involve in MPNs, is clinical trials.

So you’re a researcher as well as an in the clinic clinician. So where does that fit in in the discussion, in your opinion, related to what clinical trials are happening, what might be coming, what should we put on the table for our ongoing discussion?

Dr. Michaelis:

Great question. I think there’s this false idea that clinical trials are something that are used as a last resort, and it turns out that that’s really not the case, not in MPNs and not in other conditions as well. So, clinical trials are where there’s a hope to either improve or change the standard of care. When a patient is newly diagnosed, there is oftentimes opportunities to be in a trial that might be providing the standard of care with something else, or might be testing some new agent against the standard of care.

In myeloprolifative neoplasms are one of the most novel agents; there’s a medicine called ruxolitinib which is the brand name Jakafi, and that was only approved because people participated in clinical trials and found that it was effective at the goals that were set out in the treatment of high risk or intermediate to risk myelofibrosis.

So when I talk to patients about clinical trials, I frame it again in terms of the risk stratification, what are our goals, what can we reasonably hope to change, and when should we try and do that; and I put that in the panel of options. So option No. 1 might be standard of care, option No. 2 might be a wait/watching approach; let’s just observe for awhile.

Option No. 3 might be participating in a clinical trial. Clinical trials become more important, I think, when the standard of care options haven’t worked, So in a patient that may have progressed through several lines of therapy. so in a patient that may have progressed through several lines of therapy.

Then looking even farther afield for clinical trials, newer agents, agents that are brand-new out of the lab are often tested only in a handful of spots around the country. And for people with the desire and the wherewithal to look for those novel agents, again far afield; if that’s something logistically possible. And if it’s part of your value system to be involved in something very experimental where there’s no guarantee of success, then looking into clinical trials might be helpful.

Some people don’t want to be in an experimental situation, but some people find value in being part of the process to discover new drugs. And that’s something that’s an important thing to explore with your doctor.

Andrew:

I’m just going to make my pitch. I also have another blood-related condition, chronic lymphocytic leukemia. I was in a phase II trial for that.

I got the combination therapy ten years before it was approved by the FDA as a combination. So I think that helped with my longevity. I’m on ruxolitinib, the drug you mentioned. I was not in the trial but I got it early after it was approved, and I’m very grateful, very grateful. I met even who I think was patient No. 1, Mike down at MD Anderson, and I’m very grateful; I’ve given him a big hug, you know? And so I think it’s something to consider.

Your interferon is working for you, Beth, but there are other interferons in trials and other medicines in trials should you need it. What’s your take on trials? Because I know you’ve been going, looking at all our programs and learning about it. What’s your thought about it now?

Beth:

Let me preface this by saying when I was first diagnosed, I knew I had to remain open-minded. There’s no black or white; there’s a lot of grey.

So I gave myself the commitment that I would listen to everything that’s out there that’s pertinent to me. And somewhat what Dr. Michaelis had said a few moments ago is let me identify your value system. So taking all that information in, I would absolutely consider being part of a clinical trial if it was going to benefit me or have the opportunity. And I agree again with Dr. Michaelis that it probably would depend upon where am I at. It might be working well for me today, but maybe six months, a year, two years –

The other thing I realized right away is that in as much as we all do have very rare diseases we’re speaking about today, things change. The ongoing research, what might be happening today, six months from now might be very, very different.

So taking all of that into consideration, and I do have a very strong goal for patient advocacy and hoping that my journey through this medical challenge is meaningful and could provide hope and care for others in the future.

Having said all of that, I would definitely remain open and just take the situation as it comes along.

Andrew:

Right. What a great attitude. So Erin, that comes up in your discussion. You have Drs. Grunwald and Gerber who specialize in this. I would just make a comment, so your doctors there, Dr. Michaelis in Wisconsin, other doctors we’ve mentioned along the way; these are specialists in these conditions. If you think about companies that are sponsoring trials, they’re going to go to these doctors and say would you be interested in doing this trial. So if you want to particularly have access to trials in MPNs, you want to be connected with the specialists in our conditions, right, Erin?

Because you have research going on there, right?

Erin:

We do. We have several clinical trials open at the moment that are pertinent to this particular set of patients. We don’t have every trial that’s open, but they’re also familiar with what institutions do. So, if we have to make a referral outside because of patients interested in a trial that we don’t offer, and that’s something that we routinely do.

And I just want to point out; you mentioned travel and being prepared. Because of an experience that happened recently, make sure if you travel that you take your Jakafi with you if you happen to be on it, because suddenly stopping Jakafi is not a good thing, as we educate our patients.

Andrew:

And don’t put it in your checked luggage

Erin:

Right, right.

Andrew:

Keep it right with you. I keep it so close to my heart, Erin, I understand. Jakafi, I know, it’s not something you want to stop.

Erin:

Yes, especially suddenly. It should be tapered if it’s going to be stopped or else there are withdrawals.

Andrew:

No, I’m very careful about that. Okay. So Beth, you’re living with this diagnoses that you’ve had for a year or so. So, how have you gotten your head on straight about it to go on with your life?

Beth:

Well, I knew right away that if I looked at my diagnosis as somewhat of a gift, and I mean that by I was running around, I had so many other priorities, I had no clue that anything was really wrong with me. And I shudder to think what might have happened had I not gone for that CBC. You know, I really had a very serious medical condition at the time.

And so I took the attitude that I need to be gracious I was diagnosed, because looking at the alternative, it could have had terrible consequences. And I realized – you know, it took me a couple of months to get my feet back on the ground, so to speak, to just be calmer.

And I really had to start doing some things that people had always said. Oh, you have to have balance in your life. Or you should exercise more; you need to take time out for yourself, or you need to meditate. And I just realized that I need to really be more balanced, mind, body and soul if I was going to go through this medical journey.

So I started doing some different things that worked for me. I wasn’t so good sitting there meditating, but I learned to meditate and walk. I started embarking on yoga. I really embraced myself in a plant-based diet for various reasons. It was working well for my daughter for her autoimmune and I thought there was a lot of merit for helping me. And with that came learning how to cook again; with cooking came more peace and time to think.

I know that’s sort of a long-winded answer but I had to do things differently to be able to understand that I want to live life to the fullest. And if I’m running around always worried, freaking out about this new diagnosis and my medical challenge, I wasn’t going to make it. I really had to be balanced mind, body and soul.

Andrew:

Well said; I think that’s true. So Dr. Michaelis, you have people come in. Whether you make the diagnosis or confirm a diagnosis, they’ve come from somewhere else and they’re pretty alarmed. The family members are alarmed as well. Yet, all of us want to take back control. We feel out of control; this disease we have never heard of. How do you help people? How do you counsel them so they can go on with their lives?

Dr. Michaelis:

One of the things I do is tell people that I’m paid to worry; you’re not.

My job is the worrying job; your job is the living job and so let me do the worrying. You know, I’m used to worrying about these things; I know what to worry about and that’s my job. So my job isn’t cure; I try and heal but I’m not a curer. I try to heal the best I can. If something is curable, I’ll do that. But I am good at worrying. So, that’s what I tell people to leave in the office.

The second thing is that most people have gone through episodes of their lives before where they’ve felt out of control, and things get you through that. Either your family, or the people you love that are around you, sometimes exercise or meditation. Sometimes it’s venturing back into positive habits like good eating like Beth was talking about, or being outside in nature. Some people are grounded in faith. Something that makes you feel bigger than yourself; those same strategies are helpful when you face the grief of a diagnosis like this.

And it is a grief. You’re leaving behind a perception of your body that’s not true anymore because you’ve been diagnosed with some crazy disease that you’ve never heard of. So it is a process. I would say Beth, three months is a great time to be able to have gotten grounded again, and I think the strategies that you used in sort of learning from your daughter is incredibly positive.

But you’re right; this is a new chapter for people. Like, you thought you were traveling along in one country and then the road took a turn and you’re in a different country. So you just have to sort of say well, I want to drive safely but I also have to enjoy the landscape here. So, that just means you have to adjust.

Andrew:

I’m just going to make a comment as someone now living with myelofibrosis four and a half years. So, it was terrifying and my spleen is somewhat enlarged so it’s a reminder that it’s there.

I have my medicine right next to my toothbrush morning and night so I’m reminded then. But the rest of the time, I just go about my business. And I think, and Beth you can probably relate to this, and I’ve said this a number of time. In our lives we have people say can you go on a hike with us, or can you come over for dinner, or can you take ten minutes and let’s get coffee? And often the answer is no because you’re so busy.

I’ve routinely tried to make my answer yes. And Beth, I don’t know if you, too, maybe you could say stop and smell the roses but it’s take time out to enjoy.

Beth:

I could not agree with you more, Andrew. I realized that I was just going a mile a minute all the time, and putting things off and people off.

And you do, you really do reflect on who that inner circle is that you want around you, and making time for them and enjoying that time. So yes, I absolutely agree with what you just said.

Andrew:

Erin, I’m sure you’ve had patients who’ve seen Dr. Grunwald or Dr. Gerber maybe for the initial diagnosis. They’re really troubled. And then over time, how have you counseled people to help them really just go about their lives, enjoy their families, enjoy their work, travel, whatever is important to them?

Erin:

I think that’s the key is finding out what is important to them, and then you can really help them understand that although this is a diagnosis that affects how they live the rest of their lives, and in no way should we minimize that. But we also want them to be able to do what you do, where you take your medication and you go about your day the way that you would like to. I think a large part of the reason our patients don’t always do that is how they feel.

A lot of times they suffer from fatigue, either from anemia or secondarily or just from the disease itself.

It’s hard for them to feel up to doing those sorts of things so I think it’s really important to find to what kind of lifestyle they lead, how we could maybe improve upon that, and then involve any members of the interdisciplinary team that we need to. Sometimes patients need social support, sometimes they need – we have a social worker on campus that’s able to help patients especially with that first visit it they’re having trouble coping.

We have resources available that can help these patients. But I think the key to it is understanding what life looks like to them, what they enjoy about it, what’s important to them, and how we can get them back to doing those things.

Andrew:

Amen. So Dr. Michaelis, let’s talk about communication, not just the emails and the web portals and phone calls, but sort of transparency in communication, if you will. So, that’s on a number of levels. You mentioned fatigue, Erin, and fatigue, I’m fortunate I think I really haven’t been affected by it in any big way.

Beth, I’m not sure about you but there are things sometimes that we don’t confront, or don’t make positive adjustments to. How do you help people first of all communicate about what’s really going on? You mentioned a phone call about itching awhile ago. But whatever the symptom may be and where you all put your heads together to say how can we help you live well, deal with this, improve it if we can, and if we can, what adjustments can we make? Let’s talk about that open communication.

Beth:

Absolutely. One of the things is Erin is absolutely right; this cluster of diseases has a lot of symptoms. And it used to be that policies looked at the blood numbers and said ah, they’re not that bad; you’re fine.

It’s the work of Dr. Mesa who really brought this idea of symptom management and identifying and quantifying the symptoms that patients have, that has led us to be able to say the people with myelofibrosis and myeloproliferative neoplasms are more tired, they have more difficulty; we’ve heard about the itching and the bone pain. There’s also more difficulty sleeping, more chances to depressions, sometimes difficulty fulfilling work obligations. So, truly there are some symptoms.

Now, some of those get much better. They get better sometimes with medications, for example. They can get better if the anemia is well controlled. We do think that probably exercise is helpful, although there are still clinical trials going on with that. But your doctor is never going to know if you don’t tell them. And if the doctor doesn’t ask on a routine basis, and have you really used some metrics to quantify it?

So some of us use surveys. Every time a patient comes in, they might do a certain survey that says: in the last week, how often have you been in pain? For the last week, have you noticed depression? Or for the last month, have you found more difficulty sleeping?

Those kind of things, and we can compare just like you charted your CBC over time; you can also look at your symptoms over time and it’s something quantifiable. It also gives you a hard number to measure; is my treatment working? Look, you say you don’t feel differently but look what you were saying your pain was before, and look what it is over the last three visits. So that helps to really bring people back to the fact that while things aren’t perfect, maybe we’ve made some improvements.

But I absolutely think that not only keeping a diary of your symptoms at home, so if you just keep a little three-ring binder or something that says I notice that my migraines are happening at once a week versus twice a week as before; making sure you arrive at that doctor’s office with data in hand can be really helpful at grounding them back to the fact that this is a symptom-based disease, a lot. And if you don’t treat the symptoms, you’re missing a key part of helping that patient thrive.

Andrew:

Erin, you’re nodding your head. And I know when you walk into the Levine Cancer Institute, you give us a clipboard.

There’s stuff to answer, and they do that in San Diego. Maybe you have that, Beth, at USC in Los Angeles, as well. So that, really being honest, the patient, and maybe the family member saying – if they’re with you – hey, you really haven’t been sleeping well. You really have been avoiding taking a shower because you said you’re having itching. That’s important, right?

Erin:

Yes, sir. And it’s sort of funny. These are constitutional symptoms that the patients feel. We give them an assessment every time they come to see us; one on their initial consultation that’s slightly different, and then subsequent follow up they’ll fill one out that is the square of 100, based on their symptoms. The max score, if they had every symptom at its worst would be 100; and if they had no symptoms, it would be a zero.

So we are able to track the progress. But it always tickles me that a lot of times the caregiver will fill it out on the patient’s behalf. Sometimes we might get more accurate information that way because the patients don’t want to complain, per se.

So the caregiver knows they’ve complained to them, whereas they don’t want to complain to us so it is interesting to see.

Andrew:

Okay, let’s go on and take some questions. And if you have a question, send it to MPN@PatientPower.info. Laura, this one’s for you. This is from Sandra. Sandra writes in: 2012 through a number of blood tests, I was diagnosed with an unclassified MPN. I see a hematologist once per year for blood work. My chart currently says MPN disease stable, and I’ve never been on any medication. Is it possible to be unclassified or are my doctors just waiting for the disease to progress?

Dr. Michaelis:

There is definitely a condition called MPN-NOS. That tends to be something called – it often is an MDS/MPN overlap.

I will tell you the World Health Organization recently redid their numeric – the way they sub-classify these. So one thing you might want to ask the next time you see your physician is, is my disease still classified as MPN-NOS? Or does the new WHO diagnosis, the new WHO classification give me a more precise definition? I will tell you also that sometimes repeated bone marrow biopsies, or at least a second bone marrow biopsy might be necessary to see what’s happening at this time.

Diseases evolve over time, so if it’s been five years since your last bone marrow biopsy, and if somebody is considering treating you, then I would certainly get a repeat bone marrow biopsy to get an accurate picture of your diagnosis.

Andrew:

Okay, here’s another question probably for you as the provider, here. I believe the name is Maria; could be Maria but I think it’s Maria. Or, we’ll call her Mari.

Does a B2 vitamin supplement, 1 milligram tablet a day orally, do any harm for a patient with PV? And then she also asks about other supplements such as valerian root or melatonin.

Dr. Michaelis:

About the B vitamins, I don’t know that it would do any harm. We do tend to avoid too many vitamin supplements in the early phases of these diseases because these diseases are where the bone marrow is growing on its own. It’s kind of like it stopped listening to the body’s controlling signals and the stem cells, which are the interior parts of the bone marrow, are growing without control and that’s why people’s hemoglobin or platelets are high.

So you don’t want to feed that. I don’t think it’s dangerous to take the B2 vitamin, but I also don’t know what help it would have.

With regard to a supplement like valerian root, that’s not really – I don’t know anything about that. What we have here, for example, is a specialist – is somebody who deals with alternative – she’s a pharmacist. She knows a lot about alternative medicines. And what I ask people who are interested in taking a lot of supplements is to have an appointment with her and verify that nothing is going to get in the way of the therapies that I provide. Because I’m responsible for the toxicities of any therapy that I administer. And so what I really want to make sure is that no supplements are going to hurt in that way.

Melatonin is a relatively common supplement. It’s excellent for sleeplessness that happens to be about circadian rhythm so your light exposure. I think it’s especially helpful in the northern part of U.S. I’m here in Wisconsin, and I’ll tell you it’s hard to readjust your sleep when you’re going from a 14-hour night to a 4-hour night based on where you live. It can be helpful and I don’t think that there’s much danger that’s been reported to melatonin when used as directed.

Andrew:

Erin, I know you have a pharmacist – I’ve met him – there at the Levine Cancer Institute. So checking in with the pharmacist about prescription medicines and supplements; that’s not a bad idea, is it?

Erin:

We actually have four dedicated pharmacists to our clinic, but it’s not just us; it’s lymphoma, myeloma and leukemia clinic. But yes, we use them frequently. They’ll consult with patients and at routine visits, they’ll check in. they actually have the ability to make patients – they’re essentially really nice medication lists that tell them when to take their medications at the scheduled time. It’s a printout for them that helps them organize when to take their medications.

So the pharmacists are very involved, and if I ever have a question about a cold medication; will it interfere with the medication they’re on, or supplements, then I will start with the pharmacist and go from there.

Andrew:

Okay, let’s go on.

Here’s a question we got from Judy. Judy asks: I’m finding it difficult to coordinate care among my doctors. Do you have tips on accomplishing that? She say: not all of my doctors are interested in being part of these communications. So Dr. Michaelis, you passed out the cards but how do we make it happen when we, the patient, and maybe you helping us with a serious condition, know it’s really important?

Dr. Michaelis:

It’s hard to change other people’s behavior. I think you offer. I think another thing to do is when you go to your hematologist, ask if a copy of the note, the consultation note, can be also sent to you so you can keep at least copies of some of the written communication that’s happening.

You can’t fix bedside manner. You can find doctors who have good bedside manner, and don’t be afraid to shop around. Nobody gets offended; you’re not offending anybody.

If you find a doctor that doesn’t want to listen to the other people taking care of you, then that’s a concern. People should be collegial. You’re the only person in the room that matters so treat it like that.

Andrew:

Amen. Actually, we have an email from Charlyn that’s related to that. She has this question: What if your hem/onc doctor does not want to give you a referral, such as to a subspecialist like you? She’s saying we’re close enough to be seen by a specialist at Stanford, so in northern California, but need the referral to have it covered by our insurance. So the more general oncology maybe doesn’t want to let go, and you have to go based on insurance. Any thoughts about that?

Dr. Michaelis:

It’s not something that I encounter that much because I’m on the receiving end of that. I guess I would, like every human interaction, I would explore about why.

Why do you not think I should go up and see? If it’s about – I just want at least one consultation to make sure I’m keeping up with things – I’m not sure. It may be that the physician doesn’t think that your disease is serious enough to be seen by – that you need to be seen at an advanced or a tertiary care center. And then maybe there’s a limitation in the number of referrals you get and they want to wait until you actually need to be seen for something where things are going in the wrong direction.

But I would just treat your doctor like a human and ask them why not; let me know. And sometimes you even have to set up an appointment just for a conversation. Just say I’d like to set up an appointment to come in, have a 20 minute conversation where you just say this is what I want to explore with you; that kind of thing. When in doubt, just ask why.

Andrew:

Right. I think be a consumer, Beth, right? You’ve got to advocate for yourself.

Beth:

That’s absolutely true. And you know, it’s important to educate yourself and as Dr. Michaelis said earlier, we’ve lost control when we are affected by these types of diseases. Sometimes that might be within the conversation, too, with your oncology/hematologist to say I believe I would have more control if I also explored having a consultation or working with an additional specialist. And it’s reminding your physician that it is about you gaining control and empowering yourself to be educated. And part of that educating might be expanding your team of care.

Andrew:

Okay, I’m going to do one more question and then remember, we have a whole series of these programs.

This came in from Ina: Dr. Michaelis, my mom was recently diagnosed with ET this week; she had a bone marrow biopsy. Maybe you’ve had one, Beth; I’ve had a bunch of them. And please advise why the bone marrow biopsy is needed and what we should expect to take place when we meet with the hem/onc next week to review the results.

Dr. Michaelis:

That’s an excellent question. Essential thrombocythemia can often be – you can suspect it on the basis of the peripheral blood, but you cannot confirm it and clearly know whether or not the condition is essential thrombocythemia or myelofibrosis without examining the bone marrow. So the recommendations, and your doctors followed the standard of care in diagnosis, is to perform a bone marrow biopsy at diagnosis for everyone suspected of having a myeloproliferative neoplasm. It used to be you didn’t need it for PV, but now that’s a part of the recommendations as well.

So, I think they did the right thing by doing the bone marrow biopsy. When you get together with your doctor, you should expect first off for them to clarify exactly what the diagnosis is, and what data has led them to that. The second thing you should ask them is what risks does this pose to my mom; what are the things we need to worry about? Does this make it more likely for her to have bleeding or blood clotting? Is there anything we need to do about that? Is there a reason why she needs to start treatment? And that treatment should be chosen or based on that risk stratification.

So I would say that your conversation should be about what data led to the diagnosis, how sure we are of that diagnosis, and whether or not her risk status require that she be considered for treatment.

Andrew:

Wow, great answer. That really gave me a lot of information. You mentioned Dr. Ruben Mesa, who we all know along the way. He’s going to be with us on a program we’re going to do in August.

So for all of our viewers today, be sure to be signed up with Patient Power so you get our email alerts, and you’ll be kept informed. There are a lot of programs coming up. There’s even an event that’s going to happen I think June 24th in Chicago. So we’re all plugged in. Dr. Michaelis has been with us a number of times; Erin has been with us before.

So we have this sort of community in the MPNs now. I think virtually now, more than ever before; you are not alone. Beth, you saw Esther and I on Facebook Live, you were telling me. We’re all connected, now and Beth is on a program. Beth, I want to wish you well with your PV, and we’ll have you on another program sometime. Thank you for joining us from Oxnard, north of LA today.

Dr. Michaelis:

Good luck, Beth. Thank you.

Beth:

Thank you both. Thank you.

Andrew:

And Erin, thank you for joining us from Levine Cancer Institute. Please tell Dr. Grunwald hi; give him a hug from me.

Erin:

I will be happy to.

Andrew:

Thank you for being with us once again, the MPN Hero.

Erin:

I was in good company.

Andrew:

Oh, thanks. Laura Michaelis from the Medical College of Wisconsin up there where you have either a lot of daylight or not much daylight in Wisconsin, thanks for being with us. And I know you have a cold; feel better, okay?

Dr. Michaelis:

Thank you very much. Thank you.

Andrew:

Okay. Well, we’ve had a great program. Remember, keep informed about our series. The Living Well series is really designed to keep plugging away at the different issues that we face as MPN patients and family members. I want to thank the Patient Empowerment network; this is really their program, produced by Patient Power. We also want to thank the Insight Corporation for their ongoing support.

In Carlsbad California where it’s sunny today, I hope it’s nice weather where you are. I’m Andrew Schorr, and as I like to say: remember, knowledge can be the best medicine of all.

Darla Brown

Board Member

After a cancer diagnosis in 2010, Darla Brown shifted her career focus from entertainment and media startups to digital health entrepreneurship. In 2014, Darla co-founded Intake.me, a SaaS platform that allowed patients to manage all their health history across providers. Intake.me’s outreach programs included the Empowered Patient Chat series, which was acquired by Patient Empowerment Network, ePatient101.com, an online health academy focused on health literacy and patient empowerment, and Conseils Patients, which is a French version of ePatient101.com created in partnership with the Patient Empowerment Foundation in Lausanne, Switzerland.  As co-founder of the Healthcare Rights Coalition in November 2016, she is an advocate for affordable, equitable access to healthcare. Darla has over two decades experience in product and engineering leadership roles at web startups and software development companies such as Glossi, ThisNext.com, Comedy.com, The Jim Henson Company, The Discovery Channel, E*TRADE, ABC/Disney, and the Digital Entertainment Network. Today she is a product and technology consultant for digital healthcare and wellness companies.

World Health Day 2017: Depression – Let’s talk

World Health Day is celebrated on April 7th every year to mark the anniversary of the founding of WHO (World Health Organization). This day provides us with a unique opportunity to mobilize action around a specific health topic of concern to people all over the world.

About WHO

The World Health Organization is a specialized agency of the United Nations that is concerned with international public health. It was established on 7 April 1948, headquartered in Geneva, Switzerland. According to WHO’s website:

“Our goal is to build a better, healthier future for people all over the world. Working through offices in more than 150 countries, WHO staff work side by side with governments and other partners to ensure the highest attainable level of health for all people.

Together we strive to combat diseases – infectious diseases like influenza and HIV and noncommunicable ones like cancer and heart disease. We help mothers and children survive and thrive so they can look forward to a healthy old age. We ensure the safety of the air people breathe, the food they eat, the water they drink – and the medicines and vaccines they need.”

Theme

The theme of 2017 World Health Day campaign is depression. You can check out the campaign toolkit here.

Depression affects people of all ages, from all walks of life, in all countries. It causes mental anguish and impacts on people’s ability to carry out even the simplest everyday tasks, with sometimes devastating consequences for relationships with family and friends and the ability to earn a living. At worst, depression can lead to suicide, now the second leading cause of death among 15-29-year olds.

Yet, depression can be prevented and treated. A better understanding of what depression is, and how it can be prevented and treated, will help reduce the stigma associated with the condition, and lead to more people seeking help.

About Depression

Depression is a common mental disorder that presents with depressed mood, loss of interest or pleasure, decreased energy, feelings of guilt or low self-worth, disturbed sleep or appetite, and poor concentration (WHO 2012). Globally more than 300 million people suffer from it. Women are affected by depression twice than men. Depression can lead to suicide. Depression can produce huge economical and social burden also. The WHO characterizes depression as:

  • By persistent sadness and a loss of interest in activities that you normally enjoy, accompanied by an inability to carry out daily activities, for at least two weeks.
  • Loss of energy; a change in appetite; sleeping more or less; anxiety; reduced concentration; indecisiveness; restlessness; feelings of worthlessness, guilt, or hopelessness; and thoughts of self-harm or suicide.
  • Something that can happen to anybody.
  • Not a sign of weakness.
  • Treatable, with talking therapies or antidepressant medication or a combination of these.

What You Can Do

The WHO organizes international, regional and local events on the Day related to a particular theme. World Health Day is acknowledged by various governments and non-governmental organizations with interests in public health issues, who also organize activities and highlight their support in media reports. Examples of events include conferences for health worksers, briefings for local politicians, and informational displays for children and young people. Public marches and demonstrations, as well as free or easy access to medical tests, can also take place on the day. Check out how you can get involved here.