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Anyone with primary myelofibrosis, low risk, asymptomatic?

Posted by mahmoudbakry @mahmoudbakry, Apr 2, 2024

Is there anyone here suffer from PMF? Or whose doctor diagnosed him primary myelofibrosis with low risk, no symptoms, my doctor is very hesitant to give me the final stamp PMF officially, and he is worrying about whether to start treatment or not?
by the way he told me the Treatment is :Jakavi ruxolitinib

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lmkmom | @lmkmom | Jan 20 5:24pm

Hi everyone. I was diagnosed with primary Myleofibrosis , MDS in March 2025. I was also low risk. My blast counts elevated to 17% literally overnight in Nov. i was already planning a BMT, so very lucky to have had a donor about to donate. The disease can progress fast. Last BMB I had , put me in the severe catagory. As we speak im at U of M hospital and got my stem cells on dec 29.
Im grateful for a chance to cure my Cancer. I pray for anyone going through this. The symptoms are minimal. I was anemic. I felt like a million bucks the day I was admitted ( 12/23/25)
God bless you all.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 21 8:57am
In reply to @lmkmom "Hi everyone. I was diagnosed with primary Myleofibrosis , MDS in March 2025. I was also..." + (show)
Profile picture for lmkmom @lmkmom

Hi everyone. I was diagnosed with primary Myleofibrosis , MDS in March 2025. I was also low risk. My blast counts elevated to 17% literally overnight in Nov. i was already planning a BMT, so very lucky to have had a donor about to donate. The disease can progress fast. Last BMB I had , put me in the severe catagory. As we speak im at U of M hospital and got my stem cells on dec 29.
Im grateful for a chance to cure my Cancer. I pray for anyone going through this. The symptoms are minimal. I was anemic. I felt like a million bucks the day I was admitted ( 12/23/25)
God bless you all.

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Hi @lmkmom! Congratulations on your BMT. I’m so happy for you that you’ve been given this 2nd chance at life. Since you’re in the very early stages of recovery, how are you feeling? The first month to a month and an half is usually the most challenging period. Are you still in the hospital or convalescing nearby?

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1pearl | @1pearl | Jan 24 1:27pm
In reply to @gajokos "@1pearl I too have been diagnosed with MF about two months ago after a marrow biopsy...." + (show)
Profile picture for gajokos @gajokos

@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?

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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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gajokos | @gajokos | Feb 8 6:12pm
In reply to @1pearl "Hi @gajokos May I ask if you were able to access UCSF as a Kaiser member?..." + (show)
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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 @1pearl
It looks like I didn't respond to your message above, but then again I apologize if this is a repeat of a preceding response. I have stopped worrying about my forgetfulness --what Buddhists refer to as "second arrows."
Regarding your question "access UCSF as a Kaiser member?" Nope, I had to pay UCSF $900 for a second (written) opinion which would address no more than 5 questions. My case is still currently being considered (at least I hope so, and I hope to hear from them this coming week).

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1pearl | @1pearl | Feb 9 2:07am
In reply to @gajokos "Hi @1pearl It looks like I didn't respond to your message above, but then again I..." + (show)
Profile picture for gajokos @gajokos

Hi @1pearl
It looks like I didn't respond to your message above, but then again I apologize if this is a repeat of a preceding response. I have stopped worrying about my forgetfulness --what Buddhists refer to as "second arrows."
Regarding your question "access UCSF as a Kaiser member?" Nope, I had to pay UCSF $900 for a second (written) opinion which would address no more than 5 questions. My case is still currently being considered (at least I hope so, and I hope to hear from them this coming week).

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Hi @gajokos ,
No worries. I think I had forgotten to read what you wrote in a different post about having to pay out of pocket. My Kaiser O/H had told me I would have to pay out of pocket too. That just did not seem right to me as if they cannot provide proper doctor care, it would seem that they should need to find that for their patients. I was not pleased and changed that Senior Advantage Plan to one that gave me access to UCSD doctors. I have seen my new primary who is very thorough and she did get me referred to UCSD and I have an authorization to be seen there. I am not sure which doctor I would be given there though. I must check in to that. I just received the authorization a couple of days ago. I would rather just start all over with a MPN specialist.
One more question I have for you if you do not mind sharing is how you were diagnosed with myelofibrosis. Did you get a bone marrow biopsy? I know that before I asked for one, I was told I just had essential thrombocytosis. My O/H at Kaiser said one was not necessary as blood lab was enough and it determined I had ET. Everything changed when I asked for a bone marrow biopsy. But I knew CALR mutation could be ET or myelofibrosis so it seemed good to know which one. In hind sight, I think I was wrong. I do not think they really know for sure what I have. Since I have no symptoms and feel good like I always have, I am just grateful for that.
Thanks for your message. I hope you get a written second opinion from UCSF soon. Please keep me posted on what you find out.

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1pearl | @1pearl | Feb 13 12:18am
In reply to @gajokos "Hi @1pearl It looks like I didn't respond to your message above, but then again I..." + (show)
Profile picture for gajokos @gajokos

Hi @1pearl
It looks like I didn't respond to your message above, but then again I apologize if this is a repeat of a preceding response. I have stopped worrying about my forgetfulness --what Buddhists refer to as "second arrows."
Regarding your question "access UCSF as a Kaiser member?" Nope, I had to pay UCSF $900 for a second (written) opinion which would address no more than 5 questions. My case is still currently being considered (at least I hope so, and I hope to hear from them this coming week).

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❤️

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