Samantha’s MPN Story: Dealing With a Diagnosis in Your 20s and Beyond

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Topics include: Living Well and Patient Stories

Although essential thrombocythemia (ET) is typically diagnosed later in life, there are young adults living with the disease. How do younger patients learn to cope and manage their MPN in the midst of starting a career, enjoying time with friends, or having kids? Tune in to hear Samantha share her experience and the challenges she faced after being diagnosed with ET at only 26 years of age.

Produced in partnership with The University of Texas MD Anderson Cancer Center. We thank Incyte for their support.

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

Beth Kart Probert:

Samantha, you were diagnosed at a really young age with ET. And what was that like? I cannot even imagine it.

Samantha:            

Sure. So, I was 26 at the time. And I had just had a baby. And I had symptoms that were very typical of ET, but I’d also just had a baby. So, I was tired. I had headaches. Okay. My baby didn’t sleep at night. I was up at all hours. But things kept getting worse. I had the fatigue, I had the headaches. But then, I also started having the erythromelalgia. My fingers and my toes would catch on fire and burn like I had never felt before. And then, the headaches got worse, and I had migraines and ocular migraines. And then, I would get vertigo and fall over. Or the left side of my face started sticking, and I was getting more and more concerned. 

And no longer could my primary care physician say it’s odd, you just had a baby. So, I ended up going to an internal medicine physician who did a CBC and could quickly see my counts were crazy, at that point. And, luckily, my family kept pushing me to go back to the doctor and try a different doctor and go to another doctor because left untreated, it was in a really critical point.

Once I had the right diagnosis and started taking, at that time, anagrelide (Agrylin), I felt so much better and was able to put my life back into a regular routine. 

Beth Kart Probert:           

And that’s so important. Again, emphasizing that you just had a baby, and there’s no such thing as routine or feeling well sometimes. But, ultimately, recognizing you were having some exceptional things going on. And I’m told that, again, three years later, at the young age of 29, you were diagnosed with something else. So what happened then?

Samantha:            

Well, things just keep changing. And I think you’ve got to be really aware of your own body and what’s going on. So, three years later, all of my counts started to look higher. I was flushed. I had, again, with the headaches. Anagrelide was helping with the platelets headaches but not really anything else.

And, at that point, I was going to see a different doctor. I went up to the Mayo Clinic in Rochester, and they re-evaluated what was going on, did a new panel, and was like we think this has changed. Either it was masked beforehand, or this is really a new diagnosis. But, again, I felt different, at that time. You get to really learn your own body and see what’s going on. So, at 29, I was diagnosed with polycythemia, and I started taking Hydrea instead.

Beth Kart Probert:           

And you also found Dr. V. How did that come about? How did you get referred? 

Samantha:            

I’ve seen a lot of doctors. I was at the Mayo Clinic in Rochester. And they had suggested that I continue to see my local hematologist in Houston. When I came back to see my local hematologist, he was concerned that maybe I should start looking at maybe some clinical trials or to see if there was something else open. He did not have any other young patients.

And I think, at that time, I saw Dr. Procal who is now in Utah. But he was here in Houston, at the time. And Dr. Procal referred me to Dr. Verstovsek. And I’ve been here for the last 11 years. 

Beth Kart Probert:           

Wonderful. And tell me about your treatments, your current treatments. What are you doing now?

Samantha:            

I’m not doing anything now. It’s lovely. It’s so lovely. But I have taken, in the past, anagrelide for a couple of years. I took Hydrea for about 10 years. I had a brief stint with peginterferon alfa-2a (Pegasys). We did not get along at all. That was very brief. I think I might have taken three micro doses. Then, I had a lot of problems with pruritis, which was really impacting my day-to-day life. It was horrible. And I came back in and talked with my treating team. And they suggested that I do a clinical trial on momelotinib, which was great and helped tremendously with the pruritis, and, in fact, stopped it all together.

And since then, with the momelotinib stopped, I have been really stable. And you always want to know when there’s something different in your treatment, you want to know what’s going on. Why am I now stable? Why aren’t my counts higher or lower? And, really, these are questions that you ask your treatment team. And they tell you to enjoy your life. And right now, there’s no hard or fast answer to really any of these questions. And the best thing that you can do is treat your body as kindly as you can, eat well, get some exercise, and enjoy it.

Beth Kart Probert:           

Samantha, you mentioned something, and I just want to clarify. For those of you here today or online, pruritis, can you tell those that don’t know what it is what is that because, boy, is it something?

Samantha:            

It’s horrible. It can range from—it’s a reaction to water. In my case, it was mostly warm water, and it’s worse with any water, and then, humidity, which here in Houston was terrible. So it starts some sort of reaction where your skin starts to itch a little bit like you have dry skin but then worse and worse and worse and worse until all you can think about is maybe if I fillet my own skin off, would it be better. If I don’t have skin, would this stop? And it leads you to make some—there are a number of treatments for it, none that I found were effective at all, until you just stop being around water. I stopped showering for a year. It was horrible.

And when they talk about quality of life, even though I’m young, and I’m fairly stable, pruritis had such a negative impact on my day-to-day existence. That made it worth taking the step and joining a clinical trial and starting with this drug that wasn’t that well known. But it had a dramatic effect on eliminating the pruritis. It was the best medical choice for me. I made it with my medical team. And I was pleased that I did it.

Beth Kart Probert:           

That is very encouraging. And so, how did you find out about the clinical trial?

Samantha:            

Dawn, Lindsay Lyle at the time who was here before Julie, and Dr. V. I came in, and I was coming in every couple of months and was really struggling. And we tried a couple of other I say easier options first. We tried a hydroxyzine (Vistaril, Atarax). We tried H1H2 blockers. I tried all of the advice that I could find. 

Do this or don’t do that, eat this, don’t eat that. None of that worked. And so, we tried a couple of different things until, finally, we’re like it’s time to try one of these quality-of-life drugs.  

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

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Page last updated on January 2, 2018