Answer Summary
Members shared personal experiences comparing hydroxyurea and interferon treatments for ET and PV, offering thoughtful perspectives on side... Read more
Bert & Mel, good morning. I will further add to this conversation. I have recently read unfortunate cases where progression to MF have occurred. In those cases the common denominator was the treatment with HU. Not to say that HU is the catalyst but with certainty it does not target mutation.
Advocacy and knowledge are essential to our well being. My hematologist had never prescribed interferon, she was strict to the HU protocol of cost, simplicity and achieving clinical numbers. I denied this treatment and relied on Phlebotomies for 17 months.
Through strong advocacy I became her first patient to take Besremi. My success thus far has been inspirational for her. Interferon is now her preferred treatment option.
We have cancer, it sucks but a normal life can be achieved with patient specific treatment. My goals were QofL and longevity, Besremi has addressed both. I am so grateful to my doctor for listening, screening and preparing my case for approval. Having witnessed my mother suffer from progressive MPN I strongly suggest that the 'progression' variable be considered when choosing treatment.
Wishing us all many smiles.
Bert, if I understand, your doctor didn't want to treat your condition because they didn't know much about the drug? If I read your statement correctly, you must find a hematologist specializing in MPN and who knows about all the possible therapies and all new therapies in clinical trials.
I've been on both medications. Both have side effects. You may or may not experience common listed side effects. You may have a side effects not listed. Since interferons can have long term results...some (in my opinion a small percentage) are able to reduce the treatment dose or frequency or even stop for a period of time because their numbers are "good". An incredible result. There are conditions that preclude treatment with interferon...one is thyroid disease. When making a decision between the two treatments, it's best to look at all the conditions that preclude treatment with interferon not just the list of side effects (which is very long). Anxiety? Doctors used to think I had anxiety but that was based on the fact that when I would be at an appointment it would be obvious I knew more about MPN than they or that basically they did not understand or "believe" what medications were doing to my body...that and other stuff. I'm being vague. 🤷🏼♀️ I didn't have anxiety or any induced depression with interferon. (some disappointment, fear) I saw a specialist after 15 years diagnosis and treatment and he was the only one who accepted what was going on with my body. All of this being said,if there are no conditions that preclude treating with interferon, I think a person should try the treatment. Anxiety can be watched. You know your body.
Excellent comments above. I can feel Renee's anxiety. Anxiety isn't good for platelet level, at least in my case (maybe due to inflammation). Taking walks and doing relaxation exercises help me to reduce stress. I also want to reassure Renee that some people on this site have taken HU for years w/o problems. Hopefully Renee will be in that group. Finally, decades before ET entered my life, I've had occasional superficial skin cancer, discovered by a dermatologist at regular body checks, and easily removed. Adding visits to a dermatologist may be a good idea for Renee and for others here. This also could help with anxiety about skin cancer, especially for those of us who have gotten too much sunshine over the years.
i was on interferon and dr wanted me to start jakafi and told me he did not have patients with interferon so took hu where he had , perhaps yours is the same not known good enough with those meds