Myeloproliferative Neoplasms

Has anyone experienced cytokine storm after stopping Jakafi suddenly?

Anyone here ever experience a Cytokine Storm? Well, let me tell you… It is not a fun experience! I was on 15 mg of Jakafi, two times a day and after six weeks, my cell counts all bottomed out, so… my heme doc stopped my Jakafi and after 3 days, I became ill…was considered pancytopenic with even lower blood counts: hgb 8.1; plt 47; WBC 3; and RBC 3. I passed out several times, had nausea, a tight chest pain and killer headache; a-fib and pvc’s on my EKG, dizzy, and BP 80/50, HR 50; freezing cold even with 6 layers of warmed blankets. And covered in bruises. It was not fun! I will never allow a doc to stop my Jakafi cold turkey again! Now 3 days later and still feeling bad! Plus, may need to switch to something else if Jakafi is going to wipe out my counts!

What should I expect with PV and ET diagnosis while waiting for bone marrow results?

I’m new to this conversation. My doctors lab said I have PV and ET. I had a bone marrow biopsy to determine which is the predominate disorder. I also have JAK2 with letters and numbers after it. I get results Dec 3. I’m nervous about what I’ll hear. Any idea of what’s ahead of me?

What does it mean to have both Polycythemia Vera and Essential Thrombocythemia?

Doctors lab said it said I have Polycythenia Vera and Essential Thromcythemia. I had a bone marrow biopsy and get resulted 3. I have no idea what is ahead of me.

How do you stay positive and enjoy life during cancer treatment?

It is a good day to check in I suppose! I am preparing for a move from Texas to Indiana to be near family! A lot to do but today I went with my master gardeners group to help prepare beds for winter. Saved a lot of different seeds and the weather was amazing! Good to get outside and do what I love! How are you? I am genuinely interested in hearing about your diagnosis and what you do to keep enjoying life!

Has anyone experienced immediate spleen shrinkage with Jakafi for MF?

I was diagnosed in 2013 with PV but not told it was cancer… just instructed to donate blood 3-4x/yr. My spleen started enlarging and then symptoms came recently! Spleen 22cm, itching (w/any temp change from cool to hot), fatigue, headaches, dizziness, bruising, and bone pain. Now my dx is Post PV MF, JAK2, Trisomy 8, del20Q, allele burden 88%, MF 2/3, anemic and platelets dropping - started Jakafi 15 mg 2x/day, 2 weeks ago and spleen shrinking already by quite a bit! Has anyone else had the experience of an immediate spleen response to Jakafi? My MPN specialist says I could go years on Jakafi and no sct will be necessary but it seems like many have a more varied experience and I am 65 so feel a sense of urgency to find a clear path. My heme/onc doc gave me an immediate referral to transplant doc and that doc says his guess is that I’m headed toward sct about 6 -12mo. The MPN specialist disagrees and was painting a picture of butterflies and roses. I am so confused and wish I had a definite path… but this disease is just not that cooperative, it seems! Any insights anyone can share?

Living with MPN and MDS: How do you cope with both diagnoses?

MPN, now also MDS

What are the early symptoms of MPN ET JAK2 besides fatigue?

Hi everyone ( My name is Dorothy I live in S Burlington VT I was diagnosed with MPN ET JAK2 Only synth I had was so fatigued all the time. I was going in for breast cancer surgery when it was found in my blood work, or I never would have known.🙏🏻✝️

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Has Anyone Else Been Diagnosed Without Symptoms?

I was just diagnosed with this but there are no symptoms. Anyone else?