This past week, I received the results of a bone marrow biopsy after being on Besremi for 12 months to treat PV (diagnosed 16 years prior to interferon treatment). I was very anxious about the results, because the bone marrow biopsy I got 2.5 months before starting Besremi showed more than minimal fibrosis, a quite high allele burden (well over 50%), and an abnormal karyotype (2 of out 10).
After that BMB in April 2022, the doctor said, "We need to get you on an interferon." We started the Besremi in June 2022, and I steadily moved the dose up to the max of 500 mcg every two weeks. Fortunately, I've tolerated it well, despite going through a phase of moodiness and irritability, a slight bit of nausea (which could be in my head), and some mild rashes.
The follow-up BMB was in June 2023. In addition to having my blood counts now under control, the fibrosity level is the same, the allele burden went down 9% (still over 50, but on the right track), and the abnormal karyotype is completely gone. (The doctor was most excited about the karyotype, because that's apparently correlated with disease progression and severity.) My spleen is also a little smaller, and the post-shower itchiness has gone away almost completely. The other change (and this may not mean anything or be connected to the drug) is that the LDH is in the normal range. It has steadily decreased over the past year.
It took a while for the hematocrit to be under control, and I had about three phlebotomies during that 12 month period. A few things are out of whack, including WBCs and platelets being a bit low; but the counts are more normal than they've been in a very long time.
I kept reporting to the doctor that I felt really good over the past 4-5 months, but I was still super anxious about whether the disease had progressed given my less than stellar numbers. I know the future holds no guarantees, but I feel like the Besremi is starting to do its job. I've been working to put my fears about progression in the back of my head instead of always in the front -- regardless of what happens in the future.
I've learned so much from this community. I think of you all often and hope you're doing well on this MPN journey.
Started Besremi
