I previous wrote to the community a few months ago. I explained that I am 57 year old male in excellent condition taking no medications except for 81 mg aspirin daily and going for phlebotomy every 3 to 4 months for PV JAK2 Axon 12. I am asymptomatic and feel great. Had genetic blood work almost 3 years ago that came back with a VAF of 5% . I had been seeing an MPN specialist who had discussed Interferon but said we did not have to start on Besremi.
Based on comments from the community. I went to Silver Center at Cornell in NYC and had a BMB. Results were that I had PV and no early Myelofibrosis. They repeated my genetic blood work. The results were the following. My VAF went down to 3.8% and I tested positive for CALR with VAF of 5.3%. I am considering going on a low dose of Besremi and staying there to limit any side effects. Any one have any thoughts on:
1.. The Besremi,
2. That my VAF went down after 3 years
3. Testing positive for CALR with JAK2 Axon 12.
Written by
FlTodd
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While it is very uncommon, it is possible to have double driver mutations. it does make your case more complex. One could make the case that more aggressive early treatment would be warranted in this situation; however, that is something to discuss with your MPN care team. There is a bit in the literature on this issue.
It is not surprising that there is a difference in your peripheral blood and bone marrow aspirate JAK2 allele burden. I doubt there is any particular significance to the difference but would discuss with your MPN care team.
It seems very reasonable to consider imitating earlier intervention with a low dose of Besremi. This is not, however, a clear-cut decision. It hinges on a decision about your treatment goals and risk tolerance. The primary advantages to Besremi are that you could avoid potential adverse effects from the phlebotomy-induced iron deficiency and hopefully reduce your risk of progression. This potential benefit needs to be weighed against the inherent risks related to Besremi.
The providers at the SIlver Center have a great deal of experience with managing patients on interferon. They should be able to guide you through everything you need to consider to make a good decision.
My experience with Besremi has been very positive. It is much easier to tolerate than the long-term consequences of iatrogenic iron deficiency. My quality of life improved when I shifted from phlebotomy-only to the interferons. Note that we are all different in how we respond to these interventions.
I am not going to comment necessarily on what you should do as that is up to you and your doctor. But I want to point out that new studies/articles have shown treating low risk PV early is beneficial to prevent progression. As of July 2023 Besremi was the first drug (to my knowledge) approved/recommended to treat low risk PV. Hope this may just help in your decision making! Happy Holidays!!!
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