Essential Thrombocythemia (ET) in Young People: What’s the Treatment Plan?

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Topics include: Living Well , Treatment and Understanding

Although essential thrombocythemia (ET) is generally thought of as a disease that only affects the middle age and elderly population, but it has been observed in young adults too. Dr. Naveen Pemmaraju, a specialist at The University of Texas MD Anderson Cancer Center, explains what treatment options are available and how the livelihoods of youth are affected.

This town meeting was sponsored by Incyte Corporation. It was produced by Patient Power in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

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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.

Jeff Folloder:

I’ve got a question that came in from online. This is very cool, because we normally don’t think of this as a young person’s issue. My 16-year-old son has ET with consistently high platelets. Should younger patients be on a low-dose aspirin regimen? Great question. What about young people?

Dr. Pemmaraju:           

Yeah. So, Brady and I, again, we used to work together at Hopkins in our lab with Dr. Moliterno and Dr. Spivac.

And this has been a focus of our collective groups and continues now, as we both are attending physicians at our own institutions. What Brady and I have found is that, exactly right, MPNs, we used to think of them as diseases or cancers of the elderly. But that’s not the case in the real world. There is a group of patients, so-called AYA patients, or adolescent young adults who have these MPNs, CML, in the age category of teenager, 15 all the way up to 29, even up to 39. The NCCN and other entities recognize this AYA or adolescent young adult as a special, unique, vulnerable population. They’re outside of the norm. and they have special considerations.

This young patient who is just beginning his life, we’re talking about still going through puberty and taking aspirin or hydroxyurea (Hydrea). We’re talking about changes in the family dynamic where you’re on your parents’ health system until XYZ, and then, you either lose that health insurance, or you get your own job, or there’s a change.

And then, we’re talking about issues about starting a life, fertility, having kids, starting a relationship. So, the answer is yes, ET, PV, MF do happen in young patients for sure. Two, they can have special considerations such as the example I gave you earlier, blood clot in and around the time of pregnancy, the cerebral sinus thrombosis brain clot when you’re starting college freshman year, taking aspirin, having a bleed on aspirin while you’re playing high school sports. That’s what this person is going to be likely experiencing, things like that. So, the answer to this is yes, it occurs. Yes, those patients are out there.

And yes, we think of it as a lifetime disease. This patient may have this disease for 70, 80 years, 90 years. So, the answer is yes, it’s okay to take—we extrapolate, at least, from the older patient experience to the younger, low-dose aspirin, hydroxyurea, interferon if needed.

But it is a lengthy discussion about short and long-term side effects and risks, development of leukemia later on, development of side effects from these medicines, and then, thinking about clinical trial therapies and all of those things, if they’re necessary. So I would say that the young patient with MPN is a focus for both of us. And I think that this is an urgent, unmet medical need, what to do.

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 October 4, 2017