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Anyone with primary myelofibrosis, low risk, asymptomatic?
Blood Cancers & Disorders | Last Active: Feb 13 12:18am | Replies (16)Comment receiving replies
@1pearl I too have been diagnosed with MF about two months ago after a marrow biopsy. Platelets had reached up to 1,000. And was told to start the chemo drug RIGHT AWAY. I decided to wait and see if any symptoms show up., and stick to baby aspirin and Lipitor (a statin) in the meantime. So, like you, I am in that kind of limbo, but fully energized at 75 years of age (which I put on account of 55 years of yoga, but who knows, it might be my good French genes!) Actually planning to ride my motorcycle across country in June. I am waiting for a new blood test and a second opinion from UCSF within the next week or two. In the meantime, my Kaiser oncologist gave me a "low risk" score given my lack of symptoms. Could you let me know how long it's been since your diagnosis?
Replies to "@1pearl I too have been diagnosed with MF about two months ago after a marrow biopsy...."
Hi @gajokos
May I ask if you were able to access UCSF as a Kaiser member? I was told by Kaiser that I would have to pay out of pocket myself to do anything with UCSD here when I had Kaiser Senior Advantage last year.
I am still learning how my new insurance works and it is a bit confusing. I am able to speak to humans and get answers though, so not too bad so far. If I need to see O/H, I prefer to see an MPN specialist and I am still trying to see if that happen as I was told the insurance I chose 1/1/2026 allows UCSD specialists and UCSD has MON specialists. I am in no rush for that appointment and really like my new primary on my plan as she is very thorough and listens! She did put referrals in for my enlarged right ring finger also and to hematology/ oncology. I could tell she was confused by everything in my chart she read for a very long time from Kaiser. She just did not seem to know exactly where I need to be seen for my plan to cover the charges. I will continue to do my lab work now that I know. I suspect I will need to verify where she sends me to O/H and dermatology too. I am not in a rush as I still feel great, have all my energy, do lots of exercise biking, doing yoga, walking, gardening, and cleaning which is not my favorite form.
Hope you are having a great weekend!
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Hi @gajokos,
It is nice to meet you. I never knew what blood cancers even were until I went to Kaiser once I turned 65 and took Medicare instead of my husband’s insurance. I was diagnosed at Kaiser with Essential Thrombocytosis in January 2025 and that same oncologist changed it to Primary Myelofibrosis February 2025. Kaiser really does not have MPN specialists, so I changed my Medicare insurance January 1, 2025. I have not seen a doctor with my new insurance yet, but have my first visit with my new primary care doctor tomorrow.
I, like you, feel just fine and have always felt fine. I still have no symptoms even one year after my ordeal of being told I have blood cancer. At this point, I do not worry about it. I am 66. I do show high platelets on blood labs at Kaiser, so I take low dose aspirin now, but nothing else . I do hope I have a better experience with my new insurance than I did with Kaiser.
Please keep in touch about what you find out from UCSF. Wishing you well!