Hi,
I hope this discussion restarts! After having high platelets on a routine physical with lab work done in December 2024, I was given diagnosis of ET in January 2025. After I found out from NGS testing from my O/H that I have CALR1 mutation, I read that could be ET or myelofibrosis, so I asked her for a bone marrow biopsy. She ordered one which was done in February 2025. She changed my diagnosis to primary myelofibrosis after talking with the pathologist on the phone who told her it looked more like that. My risk analysis for myelofibrosis is low risk and very low risk on the two tests they ran. My CT pelvic scan in June 2025 showed normal spleen size and no blood clots. I am 65 and take low dose daily aspirin. I have no symptoms and underlying health issues except a very enlarged right ring finger joint that is painless but makes it difficult to write. My O/H also referred me to bone marrow transplant specialist and I have appt early August 2025. I will go as my O/H said bone marrow transplant must be done by age 70 although she said it is not time for one now.
From @1pearl,
I just came across my own post from last July, about nine months ago. I guess I have been blessed that I still have no symptoms, just high platelets and slightly high white cells at 13.9 shown on my recent did lab work with my new insurance I took 1/2026. Last year I did go see the bone marrow transplant specialist my old insurance O/H sent me to about three hours away from my house. He said it is not true that a bone marrow transplant must be done by age 70. It can be done at later age as long as person is in very good health. He said I did not need one and may never but he just did not know for sure as no one knows what will change in their future. He just told me to stay in very good health like I am and have always been. As I feel just fine like I always have, I decided to wait for my next appointment to follow up on my possible myelofibrosis situation with someone I suspect is a true MPN expert dealing with myelofibrosis patients including those with my specific mutation. She is the lead doctor at UCSD in myelofibrosis. I have an appointment with her scheduled and it is covered by my new insurance. In the meantime, I have an appointment at the end of April to see a new hand specialist regarding my initial complaint of a very enlarged right ring finger joint that is still not painful at all but makes writing neatly a challenge. I am so glad I changed my Medicare insurance to a different plan and finally I have an awesome primary care doctor who actually listens and makes appropriate referrals promptly.
Does anyone else any update in their myelofibrosis journey? Hope everyone is doing well enjoying the Spring season.
I have Myelofibrosis and I'm on Jakifi. I might have to have some surgery (waiting on a consultation appointment) my MPN specialist suggested that prior to surgery I should get a platelet infusion (my platelets are low). Is anyone familiar with this infusion before surgery and how does insurance handle it?
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I was diagnosed with MDS in 2021 and they changed it to MF in 2025. Just wait and watch.
Hollie
From @1pearl,
I just came across my own post from last July, about nine months ago. I guess I have been blessed that I still have no symptoms, just high platelets and slightly high white cells at 13.9 shown on my recent did lab work with my new insurance I took 1/2026. Last year I did go see the bone marrow transplant specialist my old insurance O/H sent me to about three hours away from my house. He said it is not true that a bone marrow transplant must be done by age 70. It can be done at later age as long as person is in very good health. He said I did not need one and may never but he just did not know for sure as no one knows what will change in their future. He just told me to stay in very good health like I am and have always been. As I feel just fine like I always have, I decided to wait for my next appointment to follow up on my possible myelofibrosis situation with someone I suspect is a true MPN expert dealing with myelofibrosis patients including those with my specific mutation. She is the lead doctor at UCSD in myelofibrosis. I have an appointment with her scheduled and it is covered by my new insurance. In the meantime, I have an appointment at the end of April to see a new hand specialist regarding my initial complaint of a very enlarged right ring finger joint that is still not painful at all but makes writing neatly a challenge. I am so glad I changed my Medicare insurance to a different plan and finally I have an awesome primary care doctor who actually listens and makes appropriate referrals promptly.
Does anyone else any update in their myelofibrosis journey? Hope everyone is doing well enjoying the Spring season.
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2 Reactions@hlmcneely that's with me also. I kind of want a little more attention though. hard to wrap my head around
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1 ReactionNo disrespect to people with the real issues but yes. Blood work in 2 weeks.
I have Myelofibrosis and I'm on Jakifi. I might have to have some surgery (waiting on a consultation appointment) my MPN specialist suggested that prior to surgery I should get a platelet infusion (my platelets are low). Is anyone familiar with this infusion before surgery and how does insurance handle it?