Published on August 19, 2019
What steps should myeloproliferative neoplasm (MPN) patients take if they recognize a change in their condition or worsening symptoms? Expert Dr. Robyn Scherber, from the Mays Cancer Center at UT Health San Antonio MD Anderson, gives recommendations on reporting, tracking and treating MPN symptoms, and shares an online tool for self-reporting. Patient advocate Andi Malitz also describes the difference an MPN specialist made when she presented with symptoms and how she’s embracing a new perspective on quality of life. Watch now to learn her advice about reporting changes in MPN symptoms.
Visit https://www.voicesofmpn.com/pdf/mpn-symptoms-form.pdf to learn more about the Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF).
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Transcript | When Should Patients Report Symptoms to an MPN Specialist?
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.
So, if with ET, PV, MF, we notice some change, do we go to our MPN doctor first, or do we call our primary? How do we…? Because we don’t know what’s connected, you know?
Yeah, well, that’s a good question. Well, first off, I think always using common sense on the symptom. If you all of a sudden start having sudden chest pain that radiates down your arm and you feel kinda nauseous with it, I would recommend going straight to the emergency department.
Yeah. But if it’s something, especially that you’ve talked about with your MPN physician, and you know that it’s been going on for a while but maybe it suddenly got worse, I do think it’s worth letting them know right away. If it’s something you’ve been dealing with for a long time, it might be worth talking to your primary care about and kind of doing a first pass to see if there’s kind of an obvious answer.
Some MPN physicians have been a while out of their general practice training. So, it always, I think, is worthwhile to really have a good collaboration between your MPN doc and your primary care doc. But overall, I think it is important to let your MPN physician know. And I think they can help you to kind of understand what might be due to the MPN or what might not.
Any of us with an MPN, the goal is so we can go live our life. But what about communication then? So, when people are dealing with this, we really need to speak up, right, if we have a concern?
Right. I think that that’s the number one thing that you can try to do. I mean, if you just ignore the symptom, often, if it is due to the MPN, it doesn’t just go away. And making your physician aware so they can do something about it, especially your MPN physician, if it is due to your MPN, might have some strategies to try to help with the symptom.
Right. So, remember, folks, that Dr. Scherber and other MPN specialists, this is what they do. So, they have the wisdom of their experience with what people have presented with, all these different situations, and what – sometimes, through trial and error. Sometimes, through boom that works the first time, help with that. So, communication is critical. Andi, you’ve done that a lot as you sought out an MPN specialist, and that made a difference for you.
It was huge. For the first—I think it was 11 years, I was seeing a hematologist that had been recommended to me by my former primary care. And I think because I presented so well, so healthy, that I was just kinda one of those people that was, like, almost a pleasant interlude for him in his otherwise difficult day of being an oncologist. And his philosophy—which I learned is not necessarily the right philosophy; although I’m sure he’s a wonderful doctor, I don’t see him anymore—was, it’s a race to lower your platelets.
Now, in my case, I run very high. And even on—he had me up to 2,500 milligrams a day. And that’s when I started presenting with the mouth sores. And he didn’t know how to handle that problem. Basically, shrugged his shoulders. And that was my wakeup moment. That was in 2015.
And quite ironically, was how I met a lot of folks including you, Andrew, with Patient Power was I had started doing my own advocacy, which I had not done before, and started seeking out information and attended one of your Chicago town halls four years ago. And that’s where I saw Dr. Stein speaking and immediately changed. Within two weeks, went to go see him.
We weren’t able to lower me much below 2,000. My platelets are running—I won’t even say how high. And we’re definitely sure that that is the inflammation that Robyn spoke of, is definitely gotta be the problem because my platelets are running over 700 to 900, even on 2,000 milligrams a day of hydroxyurea (Hydrea). So, I am obviously living in a state of inflammation. But I’m trying to do it little by little and try to see what works and what doesn’t. But I was so grateful for the quality of life perspective that was taught to me, and now that I have embraced as much as I can.
I always do encourage my patients to do is, number one, do keep track of your symptoms. And just expect they are gonna change some with time. But keep notes of that. And it does help to even—there are different tools where you can use the MPN10, even online.
And if you can track it over time, knowing even quantitative differences can help inform your physicians or your care providers, even your loved ones, kind of how you’re doing. And expect that symptoms are gonna change also with therapy or with medical events that’ll happen. But the hope is that if you’re open about it and you keep these discussions going, we can do everything we can to try to improve those symptoms.