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Anyone want to talk about Myelofibrosis?
Blood Cancers & Disorders | Last Active: May 21 6:00pm | Replies (185)Comment receiving replies
@1pearl Hello! I have a similar situation. Diagnosed 6/2025 by a general hematologist. Sent to Rochester Mayo in July. I had significant anemia but no issues with WBC or platelets. I do think the mutations determine the physical symptoms. I am the rare MPL with a risk mutation of SRSF2. This has a higher chance of transforming to AML. I started a clinical trial October 2025 and now my hemoglobin is normal. I have a slightly enlarged spleen but no need for treatment. I retired March 27 after a 40 year career in finance/CPA and with my husband just completed the French Way Camino De Santiago. The clinical trial is working and requires me to go monthly to Mayo. I’m meeting with the BMT provider in July to discuss next steps. I’m 66 and want to be in good health when a BMT happens. With SRSF2 there is a higher chance of relapse after 5 years but with a new high intensity chemo that is reduced. Hope to hear from others in a similar situation. I’m in such a rare blood situation that it feels very lonely.
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Hi @davi0937 ,
Great to hear your update and congratulations on your retirement and doing the Camino. The clinical trial you are in sounds like it has done wonders for your anemia. I am not sure how trials even work, but might consider one if appropriate at some point. My interesting development here is that the hand specialist I saw last week feels my right finger issue looks like an indolent infection on MRI and thought it best for me to have it biopsies through place like UCSD to check for infectious disease which was mentioned from my first one, but not the one done with the group I had last year for my first year of Medicare insurance which seems strange. I am not sure how that will fit in to my MPN diagnosis. You are right that is very lonely being CALR with a rare blood condition and 66 like you. I do hope we hear from others with something similar. Please give an update after your appointment in July.