It's been a while since I posted, so I thought I'd share my recent blood work and other updates. Health-wise, things have been good overall, but I continue to have days where I feel completely drained—like a zombie has sucked all the energy out of me. The fatigue hits especially hard mid-day. Still working on solutions on this issue.
Last week, I had my annual telehealth visit with Dr. Gotlib at Stanford. My questions focused on doing everything I can to hopefully halt any progression and learning about the latest drugs and research developments.
Over the past few months, my hematocrit has been below normal at 34.7% (with no phlebotomies for two years + ), and my WBC is still low 3.4. Given these trends, Dr. Gotlib advised lowering my Besremi dose to either 150 mg every three weeks or titrating down to 100 mg every two weeks. My regular hematologist and I had discussed lowering the Besremi dose previously, but I was hesitant because I liked how much my Jak2 levels had been falling. However, given Dr. Gotlib's advice, I’m now at 100 mg every two weeks—and I hope my Jak2 continues to drop.
I asked him about the importance of lowering the JAK2 mutation and the potential advantages of doing so to hopefully stop progression, even though the research isn’t definitive. He seemed very positive about the importance of lowering JAK2 levels, explaining that Besremi works by targeting and killing the JAK2 mutation cells--a good thing.
Since started Besremi in early 2023 my JAK2 has gone from 51.89% to 13.17%
I hadn’t realized that drops in hematocrit and WBC could potentially indicate progression to myelofibrosis. I’m hopeful that these numbers will start to climb after reducing my Besremi dose.
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Elizka
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The fatigue bug is a pain.. Sometimes hard to tell what if the PV and what is the treatment. Glad to hear that your iron levels are back to the normal range.
given what you describe, I would think it very reasonable to think that you just need to lower your Besremi dose. One of the interpretations of your current status is that the Besremi is working so well that it needs to be lowered due to the long term changes it has induced. Hopefully, you will continue to see the JAK2 VAF continue to drop. I am in full agreement with you and Dr. Gotlieb that VAF is a valid biomarker for MPN disease status. We use VAF on my care team too.
While a consistent drop in HCT and WBC can have multiple interpretations, I would be inclined to think that you are moving in the right direction given the droop in VAF. Time will tell as you lower your Besremi dose.
Great progress on the Besremi. Your fatigue and low blood counts do point to Dr's advice to cut the dose. Did Dr Gotlib indicate the Jak2 reductions might be less with a lower dose?
he did not. And it’s not that not much of a dose change. But he was very pleased overall that my JAK 2 was at 13.17%. My regular hematologist has been very pleased with the drop as well, but it was very encouraging to hear from Dr. Gottlieb how it potentially is directly correlated to disease progression. normally I see him once a year, but he did offer to see me in person in six months at Stanford and I’m going to do that.. there was some other new tests that Stanford has that he could run.
My first Hem said Jak2 will go up. I showed him the then new Bes report with the familiar plot showing huge reductions, he took it to read himself. So we're going from attitude "it can't happen" to "yes it can but is it useful?" to "yes it is useful". And we now know Rux can do it too with actual trial showing the benefit.
This is the plot, it may be familiar. The numbers it's based on were published ~ 4 years ago. The most recent reports show a slight increase in the median starting after 5 years.
Thank you for this update, and your progress on bringing down the JAK2 level is so good to see. I saw my hematologist/MPN specialist yesterday, and we also decided to titrate down the dose of Besremi.
I’ve resisted every dose reduction; because, like you, I’m aggressive in wanting to go after the allele burden. Mine was at 88% in early 2022 before starting Besremi and quickly moving to 500 and then gradually coming down to 250. As of last month, it’s now at 20.2% !! But my other numbers are a bit low — platelets, WBC, and a few others. We decided yesterday to lower from 250 to 200 every two weeks. I asked the Doc if this would make it harder to go after the allele burden. He didn’t seem definite about it, but he said it’s more about the duration - being able to stay on Besremi over the long haul — than the dose.
Your post really resonated with me - because of the similar experience and because of worrying that the lower counts could mean progression. Let’s hope we both see our numbers go up a little with the lower dose!
Sounds like you are doing well. I have an appt with my MPN nurse in a month and will be asking about whether my allele burden has seen a reduction since I have been on Besremi since 7/23. My initial BMB, before Besremi, showed an allele burden of 94% and that had worried me. Hoping things are making a turn for the better. I currently take 100mcg biweekly.
Hi . I have e.t and I will say the fatigue is the most terrible thing for me also. I am only on hydrea so again I can't really offer any help with any advice. I just really found what you wrote so interesting. I really hope you keep being well. Take care xxx
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