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.
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.
Hi ideachaser1,
Thank you for sharing. My BMB says what you posted about yours. I am 65 though. So you are lucky not to get this diagnosis until 78. I do not have night sweats and never had the “feeling hot issue” common to females when they get a little older so I am not complaining. That is good to hear CALR is still the lesser of the evil genetic mutations to have also.
I did finally see my primary doctor two days ago, a new one since the first one I chose, once in Kaiser Senior Advantage Plan when I recently turned 65, canceled my appointments four times! He was a very good listener thank heavens. He ordered MRI of my enlarged right sternoclavicular joint and made sure I had an appointment with a hand specialist for my enlarged deformed right ring finger enlarged swollen proximal phangeal joint also. I am blessed to have no pain in any of my joints. He did say one can have arthritis with no pain which sounds like me. He said I do not have hypertension and just White Coat Syndrome so no need for BP meds, just take my BP at home every morning and record it which I have been doing since December 2024 when all my “medical issues” began. It was 122/68 plulse 65 this morning and similar yesterday morning although I had a busy day of work ahead yesterday when I took it. I think I have relaxed some since now having a decent primary doctor who actually sees his patients!
Now if I could just get a knowledgeable myeloid proliferative neoplasms specialist. In the meantime, I have appointment with the O/H I have seen once who insisted I have ET. I asked for the BMB which surprised her but she ordered. Then she sent me a memo that I might have Primary Myelofibrosis. We shall see if I can get a second opinion which I know would currently need to be through the Senior Advantage Plan I have. Since the change of having what we supposedly have is 4 in one million, I suspect there are not too many of these kinds of specialists. In the meantime, I remain feeling good and just keep my health lifestyle I have done for years. It is a beautiful sunny day here after lots of rain here, so I am finally getting to plant so flowers that needed to be repotted.
Hope you are having a blessed day in Florida.
Hi ideachaser1,
Thank you for sharing. My BMB says what you posted about yours. I am 65 though. So you are lucky not to get this diagnosis until 78. I do not have night sweats and never had the “feeling hot issue” common to females when they get a little older so I am not complaining. That is good to hear CALR is still the lesser of the evil genetic mutations to have also.
I did finally see my primary doctor two days ago, a new one since the first one I chose, once in Kaiser Senior Advantage Plan when I recently turned 65, canceled my appointments four times! He was a very good listener thank heavens. He ordered MRI of my enlarged right sternoclavicular joint and made sure I had an appointment with a hand specialist for my enlarged deformed right ring finger enlarged swollen proximal phangeal joint also. I am blessed to have no pain in any of my joints. He did say one can have arthritis with no pain which sounds like me. He said I do not have hypertension and just White Coat Syndrome so no need for BP meds, just take my BP at home every morning and record it which I have been doing since December 2024 when all my “medical issues” began. It was 122/68 plulse 65 this morning and similar yesterday morning although I had a busy day of work ahead yesterday when I took it. I think I have relaxed some since now having a decent primary doctor who actually sees his patients!
Now if I could just get a knowledgeable myeloid proliferative neoplasms specialist. In the meantime, I have appointment with the O/H I have seen once who insisted I have ET. I asked for the BMB which surprised her but she ordered. Then she sent me a memo that I might have Primary Myelofibrosis. We shall see if I can get a second opinion which I know would currently need to be through the Senior Advantage Plan I have. Since the change of having what we supposedly have is 4 in one million, I suspect there are not too many of these kinds of specialists. In the meantime, I remain feeling good and just keep my health lifestyle I have done for years. It is a beautiful sunny day here after lots of rain here, so I am finally getting to plant so flowers that needed to be repotted.
Hope you are having a blessed day in Florida.
I see my additional messages may not have reached you.
Go to pvreporter . com. There is a list of MPN specialists there. Also Facebook has two support groups called Myelofibrosis Support Group. Each has many people like you and I and a great source of information. Healthtree.org is also informative as is MPN advocacy.com. I attended one of their events while in Tampa and it was outstanding. I especially like online presentations by Gaby Hobbs, an MPN specialist in Boston. She explains MF the best. Hang in there. It gets a little more easy to bear with knowledge. BTW. where are you located?
I see my additional messages may not have reached you.
Go to pvreporter . com. There is a list of MPN specialists there. Also Facebook has two support groups called Myelofibrosis Support Group. Each has many people like you and I and a great source of information. Healthtree.org is also informative as is MPN advocacy.com. I attended one of their events while in Tampa and it was outstanding. I especially like online presentations by Gaby Hobbs, an MPN specialist in Boston. She explains MF the best. Hang in there. It gets a little more easy to bear with knowledge. BTW. where are you located?
Thanks as I did not seem to find your other messages. I will check out what you mentioned. I am located in Southern California, near San Diego in a much smaller town.
Thanks as I did not seem to find your other messages. I will check out what you mentioned. I am located in Southern California, near San Diego in a much smaller town.
I have had Pilycthemia Vera for almost 20 years. It’s now has changed to Myelofbrosis. Just looking for people that has this as well and how are they dealing with it.
Like you, I was initially diagnosed with PV about 6 years ago. My Doctor, at the time, prescribed Hydroxyurea but I was not able to tolerate the drug. Another bone marrow aspiration was ordered and the diagnosis was changed from PV to Myelofibrosis. I changed doctors and for three years I took no drugs; the doctor just monitored my blood counts. However, platelets started to rise and two years ago I started Jakafi ... I just turned 74. The drug worked for me but my HBC is low, causing fatigue. My doctor wants me to consider changing from Jakafi to Ojjaara. Ojjaara has helped some patients improve hemoglobin levels.
We shall see, best of luck to you.
The local clinic (Sarah Cannon) is closing so I am changing doctors again. Will discuss the suggested change in drug treatment with new doc. I have good and bad days ... sunshine and mild weather helps.
Hi @wellness3070. I'd also like to introduce you to other members who have myelofibrosis or are caring for a family member who does. @rcand10s@gael and @bjsdancer will you join us in welcoming our newest member?
Wellness, I echo Teresa's question. When were you diagnosed? Are you in treatment?
I was diagnosed with myelofibrosis a year ago, along with B-cell lymphoma. I’m taking Hydroxyurea with no side effects, feeling remarkably good, have labs done every two months. I’m 83, active and thankful for this platform with which to raise awareness and questions.
Try to continue your usual activities and enjoy life. This diagnosis does not define you; it’s just a bump in the road. Stay positive and thankful and you can handle whatever comes. Of all the kinds of cancers out there, myelofibrosis is not a bad one to have.
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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.
Hi ideachaser1,
Thank you for sharing. My BMB says what you posted about yours. I am 65 though. So you are lucky not to get this diagnosis until 78. I do not have night sweats and never had the “feeling hot issue” common to females when they get a little older so I am not complaining. That is good to hear CALR is still the lesser of the evil genetic mutations to have also.
I did finally see my primary doctor two days ago, a new one since the first one I chose, once in Kaiser Senior Advantage Plan when I recently turned 65, canceled my appointments four times! He was a very good listener thank heavens. He ordered MRI of my enlarged right sternoclavicular joint and made sure I had an appointment with a hand specialist for my enlarged deformed right ring finger enlarged swollen proximal phangeal joint also. I am blessed to have no pain in any of my joints. He did say one can have arthritis with no pain which sounds like me. He said I do not have hypertension and just White Coat Syndrome so no need for BP meds, just take my BP at home every morning and record it which I have been doing since December 2024 when all my “medical issues” began. It was 122/68 plulse 65 this morning and similar yesterday morning although I had a busy day of work ahead yesterday when I took it. I think I have relaxed some since now having a decent primary doctor who actually sees his patients!
Now if I could just get a knowledgeable myeloid proliferative neoplasms specialist. In the meantime, I have appointment with the O/H I have seen once who insisted I have ET. I asked for the BMB which surprised her but she ordered. Then she sent me a memo that I might have Primary Myelofibrosis. We shall see if I can get a second opinion which I know would currently need to be through the Senior Advantage Plan I have. Since the change of having what we supposedly have is 4 in one million, I suspect there are not too many of these kinds of specialists. In the meantime, I remain feeling good and just keep my health lifestyle I have done for years. It is a beautiful sunny day here after lots of rain here, so I am finally getting to plant so flowers that needed to be repotted.
Hope you are having a blessed day in Florida.
I see my additional messages may not have reached you.
Go to pvreporter . com. There is a list of MPN specialists there. Also Facebook has two support groups called Myelofibrosis Support Group. Each has many people like you and I and a great source of information. Healthtree.org is also informative as is MPN advocacy.com. I attended one of their events while in Tampa and it was outstanding. I especially like online presentations by Gaby Hobbs, an MPN specialist in Boston. She explains MF the best. Hang in there. It gets a little more easy to bear with knowledge. BTW. where are you located?
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2 ReactionsHi ideachaser1,
Thanks as I did not seem to find your other messages. I will check out what you mentioned. I am located in Southern California, near San Diego in a much smaller town.
no need, I repeated the info in my prior message.
Like you, I was initially diagnosed with PV about 6 years ago. My Doctor, at the time, prescribed Hydroxyurea but I was not able to tolerate the drug. Another bone marrow aspiration was ordered and the diagnosis was changed from PV to Myelofibrosis. I changed doctors and for three years I took no drugs; the doctor just monitored my blood counts. However, platelets started to rise and two years ago I started Jakafi ... I just turned 74. The drug worked for me but my HBC is low, causing fatigue. My doctor wants me to consider changing from Jakafi to Ojjaara. Ojjaara has helped some patients improve hemoglobin levels.
We shall see, best of luck to you.
The local clinic (Sarah Cannon) is closing so I am changing doctors again. Will discuss the suggested change in drug treatment with new doc. I have good and bad days ... sunshine and mild weather helps.
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Like -
Helpful -
Hug
1 ReactionI was recently diagnosed. I am 55 and starting Jakafi. I'm feeling ok just blindsided by this diagnosis.
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1 ReactionI was diagnosed with myelofibrosis a year ago, along with B-cell lymphoma. I’m taking Hydroxyurea with no side effects, feeling remarkably good, have labs done every two months. I’m 83, active and thankful for this platform with which to raise awareness and questions.
Try to continue your usual activities and enjoy life. This diagnosis does not define you; it’s just a bump in the road. Stay positive and thankful and you can handle whatever comes. Of all the kinds of cancers out there, myelofibrosis is not a bad one to have.
-
Like -
Helpful -
Hug
5 Reactions