Hi ideachaser1,
Thanks for sharing. I guess what I am asking is do you have megakaryocyte changes and any fibrosis? My BMB says says “consistent with primary myelofibrosis” so my diagnosis got changed to that. My O/H first said I had ET and I asked how she knew that. She said “there is really nothing else it can be” which was obviously wrong with this diagnosis now. How does one get a myeloid proliferative neoplasms specialist as I do not think I currently have one?
Did or do you have any symptoms? Did you ever have prior diagnosis like ET or PV? Are you similarly aged as I recently turned 65? You are the first person I have encountered with CALR mutation and diagnosis of myelofibrosis, so thank you for sharing.
I just returned from my first 6 month check up at Moffitt Cancer Center near where I live. We are so lucky our mutation is CALR. It is the mutation with the best prognosis with slowest progression.
Go to pvreporter.com. Lots of good info including a list of MPN specialists. You really do need a specialist for this very rare disease.
I still have only light night sweats and sometimes brain fog as symptoms. So minimal my specialist still doesn’t want to start treatment beyond daily aspirin. My diagnosis is Primary MF meaning I did not progress from PV or ET. I’m 78 and live in Orlando, FL. , Moffitt is in Tampa. My Orlando oncologist shares my care with my MPN specialist.
Two other sites I recommend are HealthTre Foundation and a Facebook support group called Myelofibrosis Support Group. The support group is full of people like you and me.
I hope I answered all your questions, reach out any time.
I just returned from my first 6 month check up at Moffitt Cancer Center near where I live. We are so lucky our mutation is CALR. It is the mutation with the best prognosis with slowest progression.
Go to pvreporter.com. Lots of good info including a list of MPN specialists. You really do need a specialist for this very rare disease.
I still have only light night sweats and sometimes brain fog as symptoms. So minimal my specialist still doesn’t want to start treatment beyond daily aspirin. My diagnosis is Primary MF meaning I did not progress from PV or ET. I’m 78 and live in Orlando, FL. , Moffitt is in Tampa. My Orlando oncologist shares my care with my MPN specialist.
Two other sites I recommend are HealthTre Foundation and a Facebook support group called Myelofibrosis Support Group. The support group is full of people like you and me.
I hope I answered all your questions, reach out any time.
Sorry, I missed a few of your questions. Yes, my biopsy said I have atypical megakaryocytic hyperplasia and no morphological evidence of increased blasts. CD34+ meyloblasts are not increased. No monoclonal B-cells or immunophenotypically abnormal T-cells are detected.
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I just returned from my first 6 month check up at Moffitt Cancer Center near where I live. We are so lucky our mutation is CALR. It is the mutation with the best prognosis with slowest progression.
Go to pvreporter.com. Lots of good info including a list of MPN specialists. You really do need a specialist for this very rare disease.
I still have only light night sweats and sometimes brain fog as symptoms. So minimal my specialist still doesn’t want to start treatment beyond daily aspirin. My diagnosis is Primary MF meaning I did not progress from PV or ET. I’m 78 and live in Orlando, FL. , Moffitt is in Tampa. My Orlando oncologist shares my care with my MPN specialist.
Two other sites I recommend are HealthTre Foundation and a Facebook support group called Myelofibrosis Support Group. The support group is full of people like you and me.
I hope I answered all your questions, reach out any time.
Make that HealthTree Foundation. Typo
Sorry, I missed a few of your questions. Yes, my biopsy said I have atypical megakaryocytic hyperplasia and no morphological evidence of increased blasts. CD34+ meyloblasts are not increased. No monoclonal B-cells or immunophenotypically abnormal T-cells are detected.