Ongoing recovery from the brain surgery, resection of tumor in June 2019, is going well. The MRI on 12/15 looks really good. There is no sign of tumor recurrence. The visual symptoms post-surgery (acephalgic visual migraines/palinopsia) have been subsiding in frequency and intensity. Discussed with the neurologist the implications of having both the NF1 and JAK2 mutation as it relates to risk of recurrence/new tumors. The bottom line is that both mutations increase risk of tumorigenesis and interfere with apoptosis. The interaction between the two mutations is not well understood, but they do involve some of the same mechanisms. In short, there is an on-going risk of recurrence/new tumors. It may or may not occur. We will continue to monitor. There is hope that the surgery was truly curative and the actual risk is for a new tumor rather than recurrence.
I also saw the MPN Specialist at Johns Hopkins, Dr. Braunstein. We are both very pleased with my response to the Pegasys. I am at this point considered to be in complete hematologic remission. HCT and PLT are now well controlled. All of the indicators for iron levels are gradually restoring themselves to normal and my energy levels are returning. At 45mcg/week, I have experienced no adverse effects. I did notice a few mild transient rashes lately, but not clear if they are related to the PEG. They are very mild red patches that do not itch. I am not concerned about them at all. One of my MPN pals referred to me as "the Interferon Poster Child." That is a title I will gladly accept.
Dr. Braunstein did submit a script for Besremi now that it is approved in the USA. My Medicare Part D plan managed by Cigna denied the request. Cigna also denied the immediate peer-to-peer review. The issue appears to be with Medicare rather than with Cigna. Medicare is simply not covering Besremi. Besremi is at this point a Medicare excluded medication. I will, of course, be researching this and filing a higher level appeal. I am going to post separately about his saga.
For now I am going to continue on Pegasys as I am responding so well to it. We plan to recheck my JAK2 mutant allele burden 3 years out from when I started the PEG, which will be May 2024. I am hopeful that since I responded so well to such a low dose that I will also see a significant reduction in MAB. Time will tell whether I also achieve molecular remission.
Wishing you all a very Merry Christmas and a Happy New Year. I hope and pray 2022 will be a year where we finally move beyond the COVID crisis and all of us with MPNs are able to access the treatment of our choice.
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hunter5582
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Great news for you Hunter! So pleased to read that all is going well MPN and tumour-wise. Wishing you all the very best for Christmas and a healthy and more normal 2022! Kind regards Fran xx
Good news, you are such an encouragement for all of us, and I know I speak for many when I say, when I see you have put a post up I avidly read it because you are a font of reassuring information and positivity. 🤗
Oh my dear you have been in the wars my thoughts and prayers are with you. Hunter your messages continue to inspire and inform everyone on this site your messages have served to boost my personal journey and l continue to thank you from the bottom of my heart.Love and light to you and yours and to all of us this holiday season.
So pleased health is getting better for you. Thank you for being a mine of information for this forum. Merry Christmas and a better 2022 for all! Aime xx😻😻
Hang in there Hunter, I am on 90 mcg of Pegasys for 18 weeks now with no side effects except very light rash on legs. I am scheduled for a new genetic blood test in 6 weeks. My jak2 burden was 88% last March also Tet2 burden at 25%. My Hct, etc are all in control and I am hoping for reduction in the mutations with my new genetic test. You ARE the Pegasys poster child for me, hoping the best for you.
Hunter - great news all around! You seem to be doing very well on a low dose of Peg so hopefully they will get their act together on the insurance fronts and approve Besremi but until then continuing on Peg seems like. a winner! Have the Happiest of Holidays!
Great news, keep up whatever it is that you are doing so well. Good luck going forward and don't give up on Besremi. A letter to the Senators might help. I plan to write Manchin and Capito. Best always.
Great news, Hunter -- congratulations. I also always look forward to your posts and read them avidly; the information you share is always useful and your attitude always inspires me to keep going and keep advocating for myself. I'm very pleased to hear how well Pegasys is working for you -- I'm having success with it as well, although at a very slow pace.
The problems with medicare approval of Besremi are, hopefully, a result bureaucratic lag-time. I had some problems getting genetic blood testing covered but kept appealing and it did come through, so good luck with that. In the meantime, have a Merry Christmas and happy, happy New Year. Best to you! Kim
Thanks for update, always well written and interesting. I have a question. Do you find time in your life to "live beyond" your medical conditions? Or are they all encompassing? Curious.
I have a very active life outside of managing the various health conditions. I still work part-time as a consultant, train in Gung Fu and Qigong, enjoy various hobbies, am active in my faith community, and spend time with family and friends. It would be very detrimental to only focus on the medical issues. I do give them the attention needed, but not to the exclusion of engaging in a high quality life.
Merry Christmas, Hunter, so pleased to read your update, may 2022 bring you even more good news. Thank you so much for being here for us, warmly, Jacqui.
I am in hematologic remission because of the PEG. If I stop it at this point then I would return to the erythrocytosis and thrombocytosis. It may be that I will eventually achieve molecular remission (no JAK2 mutation detectable). The research is underway to determine whether people will stay in remission if they discontinue the PEG. It would most likely take about 3 years to see a significant level of reduction in the mutant allele burden. I am hopeful that given how quickly I responded to PEG, I may be one of the people who does achieve molecular remission. time will tell.
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Any Experience with Pegasys and Wound Healing? UPDATED BELOW
