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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A myMPNteam Member asked a question 💭
Philadelphia Area, PA

Lately,I have been having patches of actinic keratosis (precursor to squamous cell cancer). Probably caused by the Hydrea - does anyone else have this problem and if so, how do they treat it?
Joanne

April 13, 2025
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Answer Summary

Members with polycythemia vera openly discussed the challenging link between hydroxyurea and actinic keratosis, with several confirming that... Read more

Members with polycythemia vera openly discussed the challenging link between hydroxyurea and actinic keratosis, with several confirming that their dermatologists attributed the skin lesions directly to the medication, even when hematologists were less certain. Treatment options shared included cryotherapy for individual spots and fluorouracil cream for widespread lesions, though the latter was described as a grueling process that ultimately cleared the skin effectively. A recurring theme was the delicate balancing act of managing blood counts versus skin cancer risk, with most members prioritizing PV control through hydroxyurea while addressing skin issues as they arise, and emphasizing the importance of finding a trusted doctor who can clearly explain treatment rationale.

A myMPNteam Member

I had issues with this on my face. I had to come off Hydrea after 20 years of taking due to ankle ulcer last year. Now, they have almost disappeared!

April 13, 2025
A myMPNteam Member

Hi MaryAnn, I actually have had cryotherapy for my presquamous lesions but since it seems like they are increasing, I have been a little worried about increasing my dose of hydrea. I think it is MH who has had another treatment. Thanks for your concern.

April 16, 2025
A myMPNteam Member

Joanne, has your dermatologist ever suggested cryotherapy or any surgical procedure like excision and curetting out the bases? Your peel sounds so caustic. How long do you have to leave it on? You have a lot of others here with vast experience with that unfortunate condition, especially MH whom I know suffers a lot. Hope you get some relief.

April 15, 2025
A myMPNteam Member

I was on a blood thinner for years, because of the initial clots and the genetic clotting factor, but went off them after the small, hemorrhagic stroke 7 years ago. I now take a low dose daily aspirin, basically as a nod to clot risk, and I don’t miss dealing with the blood thinner. I think it’s important to find a doctor you trust, and ask them questions. Your doctor should be able to clearly articulate why a particular medication is best for you, and if your dosage is increasing there is a reason for that. When I had the stroke, I changed to a doctor in the same system who was in my home town, from the hematologist I’d been seeing an hour away. The new hematologist did a risk factor chart for me, as to why a blood thinner was needed in 2001 but not needed in 2017. I really appreciated that, and have gotten the same kind of thorough responses whenever I had questions. I think it is important not to try to make these decisions ourselves, as we are not doctors and cannot have the breadth of knowledge that they do. If your doctor can’t or won’t explain the rationale for their decisions, leave them and find a more skilled and thoughtful physician. I trust mine, get answers to my questions but do not try to take on decision making. That said, it is also important to look at all of your test results and be sure you understand them. Every once in awhile, we catch something our providers miss.

April 14, 2025 (edited)
A myMPNteam Member

Thanks for such a complete response, MH. It is hard to make important decisions on one’s own. It is always a balancing act I guess so thanks for letting me know your thoughts. Are you also on a blood thinner? I was diagnosed five yrs ago because of an abdominal blood clot so was immediately put on Eliquis and feel quite comfortable on it with no side effects.

April 14, 2025

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