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azureAnemone
General Discussion • March 26
M-Spike % is rising
My M-Spike % a few months back began to rise from 0 beginning at: 2.7%, then 3.5, 4, 4.2, & currently at 5.3%. I'm on Dara once per month injection only. I immediately contacted my Doctor who advised me to continue thru my 6 month therapy regimen, & then meet in April. Is 5.3% considered alarmingly high? Also, how do you go about discussing changes in therapy? I've had a Stem Cell Transplant in 2021 that didn't reduce the cancer. Any advice would be greatly appreciated. Ken
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MPNULIMBO
Myeloproliferative Neoplasm Discussion • March 18
MPN-U Triple Negative CSF3R mutation
Hi there! Is anybody else out here that has MPN-U Triple Negative with a CSF3R mutation? I am a 60 year old female and I was diagnosed with this over the last 5 years and have been on Jakafi for 3 of those years. I have a great MPN specialist and GP, which I’m very grateful for because I know how hard it can be to find the right Doctor. Just wondering if you have a similar diagnosis. Are the co-morbidities progressing and still diminishing your QOL? I have IDA W/ low storage, Fybro, Chronic Inflammation, serious weight gain w/no explanation, bone and nerve degeneration, Ramsey-Hunt and osteoarthritis just to name a few. And my immunity is low. Yikes! Just looking for my tribe, lol.
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chocolateKitten
Polycythemia Vera Discussion • March 5
Introducing Myself: PV with Jak2
Not sure if anyone actually participates in this group since I see the last post was in July so I guess this is me attempting to connect. I'm a 49 year old woman who was diagnosed with the Jak2 mutation back in 2016 when routine labs came back with barely elevated platelets. Since then I have added a few more diagnoses to my list. Wondering if anyone else has experience balancing their treatments and care for a variety of chronic illnesses. Thanks