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Primary Myelofibrosis. Anyone in Washington state?
was diagnosed with primary myofibrosis in February 2026. Started Jakifi in March 2026 with a platelet count of 1.2 million. Started with 20 mg twice daily brought platelets down to 100 within four weeks. Then went to 10 mg twice daily that stabilized them around 500 shrink spleen to 11.5. Hematologist wanted to see what 15 mg twice daily would do. I seem to be experiencing more fatigue and weakness and have been dealing with occipital neuralgia since the start of all of this. Hematologist is trying an experiment with reducing justify to 15 mg once daily to see if that helps with the fatigue and to bring up hemoglobin which was at 9.8 symptom burden seems to have come back within a week, slight night sweats, fatigue, worsening, occipital, neuralgia, and tenderness on left side possible spleen. has anyone done this experiment and what were their findings? I’m thinking we’re probably going to adjust my dose back up to 10 twice daily since my platelet numbers really weren’t much different when we went up to the 15 twice daily I’ll see a specialist at fred hutchinson cancer center in October and hoping to get some more clarity on this disease. I see a hematologist that he is not an MPN specialist. I do take gabapentin for the nerve pain I’m just hoping that this isn’t going to be a long-term thing with the nerve pain. Please let me know what others are experiencing in their journey and again if anybody lives in Washington state that is confident in their MPN specialist
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I live in Woodinville, WA. Started doing telehealth appts with Fred Hutch in June. Didn't do in-person because my insurance won't cover it. I'll be searching for new insurance during open enrollment this fall. My hematology oncologist at Fred Hutch is Cristina Ghiuzeli. She has a great team of a PA, RN, and MA that she works with. I met with them all in person last week. Will be biting the bullet on the cost of that! I am 72 year old female. Diagnosed with ET JAK2 positive in February 2026. Put on Hydroxyurea in mid-March, 500mg twice daily. That brought my platelets down from 1007 to 340 in 6 months. My spleen is in great shape, as well as my other abdominal organs, per an ultrasound in March. My hematology oncologist at Virginia Mason referred me to Fred Hutch in April. I'm now transitioning to Besremi, self-injected every 2 weeks. Just had my first dose this past Tuesday. So far I've tolerated these meds well. We've backed off on the hydroxyurea to once daily for now. The bone marrow biopsy done by Virginia Mason wasn't quite up to Fred Hutch's standards, so once my insurance gets sorted out, I'll be getting another one done at Fred Hutch. But VM's showed 30% of my bone marrow is grade 2 fibrosis, and 70% grade 1. Scale is 0-3, 0 is no fibrosis, 3 is bad news. My diagnosis changed from ET to primary myelofibrosis in June when I first started working with Fred Hutch. Turns out VM had the opportunity to diagnose this nearly 3 years ago and ignored the data. Over 40 years of trusting that organization with my health. No more.
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3 ReactionsHi @kc7adk54 ,
I have a somewhat similar story except I have CALR1, no JAK2 mutation. I had and still have no symptoms, but went for a routine physical when I first took Medicare when i turned 65 and that showed I have high platelets. I have always been and still am very healthy, fit, active, and have lots of energy. I take no meds. I was send to an oncologist/hematologist then who told me I had ET in 1/2025. Then that oncologist/hematologist changed it to primary myelofibrosis in 2/2025 after I asked for a bone marrow biopsy (because I wrongly thought it could help doctors figure out why I have only one very deformed right ring finger proximal interphanangeal joint with no pain and never had an injury and I have seen numerous doctors about it) which she did not think was necessary saying “what else could it be?” That showed I have fibrosis 1-2 out of 3. My MIPS and DIPS are the lowest best ones on the scale for those tests.
I never took the Hydrea she prescribed which was two pills per day and still have never taken any Hydrea although a bone marrow transplant specialist said maybe one pill every two days and that I did not need a bone marrow transplant now and may never need one but the things to watch for which I still do not have of what he listed thank heavens. I have never taken any Hydrea and will not ever partly because I already had four basal cell carcinomas removed. I will not take any of the other meds either as I do not like their side effects either. I do take low dose aspirin. I changed my insurance so I could see a MPN specialist and that was actually worse. She did not read my chart before seeing me 8/2026 and assumed I had JAK2 and since I told her I had CALR1 she wrote I had both! But I do not and had extensive testing by my first insurance including NGS testing. She had not read any of it and then “poo pooed” the data from my old insurance!
I hope you have a better experience with the new insurance you find for yourself and that you actually get an MPN specialist you trust.
Stay positive and do what you think is best for yourself is my opinion.
What a bad experience for you! I haven't had any side effects from Hydroxyurea. I like the team I've met at Fred Hutch. My issue is with my primary at Virginia Mason Franciscan Health in Seattle. I guess my age was the biggest factor on the scores. I hope you're able to continue the course you've taken.
I recently was put in touch with another woman in the Seattle area that is the friend of the mother-in-law of one of my daughter-in-law's friends. That's a mouthful to follow! We tried to get together, but both seem to have busy schedules. Guess I'll reach out to her again. She was diagnosed in June of this year. What area do you live in?
Hi @kc7adk54 ,
I hope you meet someone in your area with a similar situation. I have not where I live. I forgot to mention that I live in Southern CA.
@tmth - whereabouts in Washington do you live? I'm fortunate to live "near" Fred Hutch. Still have to allow an hour to get there for the 20 mile drive.