I have now seen my MPN specialist twice. I was back to see him in Nashville on November 29. My diagnosis has changed from ET to PV which is what I kept thinking (since April)! My HCT was at 47.5, so I had my first phlebotomy of 500MLs. Yahoo! I had been begging my previous Dr to do this and he literally yelled at me in all caps that I didn't need it and HU would handle it. HU never did lower it. My new doc is shooting for a goal of 42 for my HCT, particularly since I had the cardiac blockage and stent placement a few weeks ago. I feel so validated! My previous dr said the cardiac issues were entirely unrelated to the MPN! I was floored.
I have found that i have become a really hard stick for drawing blood. I know that being dehydrated can cause that but I have been making sure that I drink plenty of water prior to phlebotomies. Ugh!
Next, I just had a squamous cell carcinoma removed from my right hand. I went to the dermatologist for my birthday! LOL! Sure enough i had skin cancer. I am just one year on HU, now. This makes me really nervous about developing more being on HU. My specialist did mention Besremi but my new local hem/onc dr just burst my bubble about it and said she would suggest Jakafi. I felt like getting up and walking out but I restrained myself. I feel like I could deal with the flu like side effects as long as they are short-lived. Besides, Jakafi also can cause skin cancers as I understand it. For now, I am on 1000 mg of HU, 2 81 mg aspirin and the phlebotomies and in a wait and see pattern.
Family is coming in from 3 different states for Christmas. We are taking precautions- adults are all vax' d and booster'd and we will all take a home covid test. The 5 and 9 year olds will have had their first vax and will also test. Hoping our precautions are enough and we all are healthy throughout their stay.
Take Care and Happy Holidays to you! I wouldn't make it through this odyssey without you! The pic is my cat checking the star on top of the tree!
:o)
Written by
Wewo01
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I just had the same conversation with my MPN specialist of Rux vs Bes. He actually worked on Rux research. I am tempted but the trade off on immunity these days is a big negative for me. If you want top vax protection my opinion is Rux is a trade off there. I posted on that recently.
Unlike your Dr, mine will do what I prefer; he says Bes is also good medicine. He is working on getting me started on Bes even as I've had complete response to HU. ( I want the allele reduction and hope for lower symptoms) It's possible all the INF plots and vax questions etc you've seen here from me (I showed him all of it) may have helped.
There are many positives in your update. So glad you have found yourself an MPN Specialist, it was so needed in your case. I am surprised however that your local haematologist refuses to be guided by the ‘Expert’ with regards to treatment. I urge you to discuss this further, especially with your concerns on the link with Jakafi and skin cancers.
I’m sure you’re going to have a great Xmas with all your family, great to hear your taking all necessary precautions too!
I really am glad that you are finally receiving proper MPN care. It is a good thing that you fired the old doc. You should have fired him twice. You might consider writing something in some of the on-line doctor rating sites so other patients will be warned.
Sorry to hear about the skin cancer. Unfortunately that is an intrinsic risk with HU. I would certainly regard HU as contraindicated for you given that occurrence. I agree that you should be very cautious about RUX as well. Particularly since we do have other potentially more effective treatment options like Pegasys and Besremi. Your local doc does not need to be a barrier to accessing the PEG options as the MPN Specialist can certainly prescribe PEG. It really is your choice,
A note on Besremi. As a new very expensive ($180,000/year) medication it may be difficult to get your insurance to approve. It is not on the Medicare formulary. My MPN Specialist just tried to get it approved for me. It was denied. I will be posting more on the saga as it unfolds. Fortunately I will be able to continue on Pegasys until it is approved.
Wishing you a very Merry Christmas and a Happy New Year.
I am going to follow up with the specialist on switching to PEG. I have noticed that in the last year that I have had a lot of actinic keratoses growths come up, I have had a couple of them for a few years but more and more were popping up. And then this one morphed into cancer. I definitely believe that HU is the culprit. My local doctors office just called to schedule an appointment with me to “discuss Hydrea”. We will see how that goes. She did not want to go down the road of PEG or Besremi, at all, at my last visit.
Most docs are unfamiliar with the PEG-IFNs and how they differ from regular IFNs in tolerability. They are also not familiar with the newer research on the greater efficacy of Besremi (and Pegasys). It is often up to us to educate our providers about MPNs and their treatment.
Do please let us know what your local doc has to say. All the best my friend.
Glad you found a doctor that is a better fit. I drive nearly an hour to go to Vanderbilt also and feel it's worth it because they have more of an understanding of this disorder than most local hematologists.
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