My Young Adult Daughter Is Not Treating Her ET: What Should She Be Cautious About?

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Topics include: Treatment and Understanding

During this Ask the Expert segment, Patient Power community member Kimberly writes in, “My 22-year-old daughter has essential thrombocythemia (ET) and no longer wants to take Hydroxyurea, what should she be aware of?” Myeloproliferative neoplasm (MPN) expert Dr. Naveen Pemmaraju, from The University of Texas MD Anderson Cancer Center, responds with potential complications, fertility and family planning, and other treatment options suitable for young people. Dr. Pemmaraju also discusses the likelihood for a person to be diagnosed with an MPN in their 20s, 30s and 40s, and tips for finding support groups.

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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.

Andrew Schorr:

Here’s a question we got in from Kimberly. She says, “My daughter is 22, she was diagnosed in 2013 with ET, and she’s been on hydroxyurea (Hydrea), but is decided she no longer wants to take the med. What should she be aware of, or cautious about, given that she’s no longer taking it?”

Dr. Pemmaraju:           

Ugh. Well, this is an area that’s very dear to me and very important to my research. With our group here, with Dr.Srdan Verstovsek and my colleagues, we just published a paper on our experience with adolescents and young adults with MPN, or AYA. As its own separate field, AYA cancer has become a very important understanding that really didn’t exist, in my opinion, 20 years ago. But our patients are not always older patients. So, young patients can get MPN, too. Yes, patients in their teens and 20s can get them just like this questioner. 

So, this is a type of patient that I’m seeing quite commonly in the clinic. Couple of points to say. One is, who can blame her? Who wants to take a life-long, indefinite oral chemotherapy that may or may not have short-term and long-term side effects? In our study what we found is, approximately 10 percent of our patients met this definition. The NCCN gives it, I think, age 16 to 39. So, younger than 40. And out of those patients, I was surprised to see that a good seven percent had a thrombotic event. That means a blood clot, either at the time of diagnosis just prior to, or just after. Well, that’s a pretty good clip, and that would be more than the general population than what you would expect. 

The problem with the young patient with MPN has several issues. One is, what about at the time of fertility and pregnancy? Two, what about at the time of surgical procedures? I’m talking about routine things, such as dental and other care. And then three, as they start to transition into their older adult years. So, in this patient’s case, this is a very difficult thing. We don’t have many drugs. We have hydroxyurea, we have interferon, which possibly might be better for a younger patient. If someone has myelofibrosis, there’s no age requirements. So, if you qualify, then the JAK inhibitor, as a class. 

But this is just one of those in-between, vulnerable populations, and we really don’t have great treatments for in general, an AYA cancer, and specifically here. And so, the main thing that we would say to this person is, really, really close follow-up early on with an MPN expert, as you always advocate. Two, is at the time of fertility planning, pregnancy in our family planning is to have high-risk maternal-fetal experts involved early on. I think, this is something important. And three, really cautious planning in and around surgical procedures, looking for bleeding and blood clots. I think those are some basic guidelines for anyone to follow. 

Andrew Schorr:          

Well, great advice for mom and daughter. I wanted to post this, just a quick question from Caroline who lives in the United Kingdom is diagnosed with primary myelofibrosis four years ago at age 49. And she said, “I’ve tried to find others with myelofibrosis of a similar age, but so far no luck.” So, is being diagnosed at her age, age 49 with myelofibrosis, unusual? 

Dr. Pemmaraju:           

There you go. That’s perfect. So, that also goes along with our “Young people get MPNs as well.” This was a disease—first of all a disease, now we recognize it as a cancer that was thought to be 60, 70, 80, 90 and older. And now we realize that there’s a significant subset of our populations diagnosed in their teens, 20s, 30s and 40s. So, we definitely want our question—our viewer to know, no, you’re not alone at all. Please, see our paper that we just put out there and several other of my colleagues, including Brady Stein and others. 

Two is, my goodness. Not only you’re not alone, but I actually believe—and I know you know this too—that a lot of rare cancers are sometimes are under diagnosed and underappreciated. It does require expert bone marrow, expertise, someone to identify it, someone to do a bone marrow. And lastly, for this patient looking for other patients, I would refer them to sources, such as this one. Patient Power, support groups on Facebook, we have a Twitter feed, as you know, a grassroots Twitter, that’s investigators initiative called #mpnsm (myeloproliferative neoplasm on social media). 

So, there are lots of different ways for this person to connect with not only younger patients with the disease, but also as a support group, virtually. And I think platforms, such as Patient Power, have frankly revolutionized the way people have obtained information, have communicated with each other, and specifically for a patient like this in the UK, who is not able to connect with me. And when there are people all over the world waiting to talk to her. 

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 December 11, 2018