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.
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?
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.
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.
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.
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.
Hi, in this video, it is not clear what new drug or treatment this Doctor is referring to, which he says attempts to make Myelofibrosis regress, instead of just masking tge symptoms. Please say. Thanks. THURS, 13 March
Hi @bmarkable. I believe the medication Dr. Tefferi was talking about in the video is Imetelstat.
People with MF or other myeloproliferative neoplasms have an elevated telomerase activity. This drug, Imetelstat (Rytelo) is a telomerase inhibitor.
~~~~
Digging around for more info for you, I found another article that might have some merit to read through with regards to the differences between ET and MF. (Posted below)
I know you’ve gotten off to a bad start with your doctor and don’t really feel you can trust her. But it also appears you’re locked into this clinic for a while with your insurance. So until you can change clinics, I just want to pop back into this conversation because I can feel your frustration with not understanding what’s going on and why the diagnosis was changed so abruptly from ET to MF. ET can progress to MF.
In fairness to your doctor, she made the decision of ET based on your extremely high platelet count of well over 1 million. Without treatment it can be dangerous to have platelet levels that high with a risk of stroke, pulmonary embolism, DVT, etc.. So she recommended starting HU to knock that cell count down to a more normal level and keep platelet production under control.
After seeing the results of the bone marrow biopsy she was able to narrow down the diagnosis to MF. The numbers and types of cells in the marrow aid in the diagnosis, along with the examination of the marrow itself. From my understanding of MF, there are characterizations that help define a diagnosis such as evidence of bone marrow megakaryocytic proliferation (an over abundance of the large platelet producing cells in the marrow), fibrosis of the webbing in the marrow ( abnormal cell production with MF causes scar tissue to replace bone marrow) and presence of JAK2, CALR, or MPL mutation. That really did just roll off the tip of my tongue!😅 I have a friend with MF and we share a lot of info and amazed with the new vocabularies we’ve picked up after the age of 65.
The risk assessment (scoring test) results your doctor was waiting a few weeks ago that you mentioned, would help determine the type of treatment for your specific case. There are a number of factors taken into consideration such as age, symptoms, hemoglobin and wbc levels and level of blast cells found in the blood.
You may still want to opt for a 2nd opinion from another institute just to confirm. But your current H/O is giving you the facts based on the analysis of your bmbx.
Quite frequently, these types of blood cancers are discovered completely by chance…with blood work before surgery or routine bloodwork with a physical. They can start slowly with no symptoms and progress silently over time, catching the patient and doctor off guard. I went through the same thing with AML.
Here is the article I mentioned about diagnosing ET/MF and the differences/similarities.
From Patient Power:
“Essential thrombocythemia (ET) and myelofibrosis (MF) are two types of myeloproliferative neoplasms (MPNs) with similar symptoms. Understanding the differences between the two conditions allows for better disease management. ET results in the excessive production of platelets” https://www.patientpower.info/myeloproliferative-neoplasms/essential-thrombocythemia-vs-myelofibrosis
I hope at some point you come to a point of resolution and are able to trust in your doctor’s education and experience to help you start the treatment you need to remain healthy.
I would also encourage you to watch this video of Dr. Ayalew Tefferi discussing potential new drugs for treating Myelofibrosis as well:
@wellness3070, there seems to be a range of treatments offered to people with myelofibrosis besides medication: blood transfusions, radiation therapy, chemotherapy, surgery to remove the spleen (splenectomy), bone marrow transplant. Have you and your doctor discussed any one of these as a possibility?
Hi, in this video, it is not clear what new drug or treatment this Doctor is referring to, which he says attempts to make Myelofibrosis regress, instead of just masking tge symptoms. Please say. Thanks. THURS, 13 March
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.
~~~~
Digging around for more info for you, I found another article that might have some merit to read through with regards to the differences between ET and MF. (Posted below)
I know you’ve gotten off to a bad start with your doctor and don’t really feel you can trust her. But it also appears you’re locked into this clinic for a while with your insurance. So until you can change clinics, I just want to pop back into this conversation because I can feel your frustration with not understanding what’s going on and why the diagnosis was changed so abruptly from ET to MF. ET can progress to MF.
In fairness to your doctor, she made the decision of ET based on your extremely high platelet count of well over 1 million. Without treatment it can be dangerous to have platelet levels that high with a risk of stroke, pulmonary embolism, DVT, etc.. So she recommended starting HU to knock that cell count down to a more normal level and keep platelet production under control.
After seeing the results of the bone marrow biopsy she was able to narrow down the diagnosis to MF. The numbers and types of cells in the marrow aid in the diagnosis, along with the examination of the marrow itself. From my understanding of MF, there are characterizations that help define a diagnosis such as evidence of bone marrow megakaryocytic proliferation (an over abundance of the large platelet producing cells in the marrow), fibrosis of the webbing in the marrow ( abnormal cell production with MF causes scar tissue to replace bone marrow) and presence of JAK2, CALR, or MPL mutation. That really did just roll off the tip of my tongue!😅 I have a friend with MF and we share a lot of info and amazed with the new vocabularies we’ve picked up after the age of 65.
The risk assessment (scoring test) results your doctor was waiting a few weeks ago that you mentioned, would help determine the type of treatment for your specific case. There are a number of factors taken into consideration such as age, symptoms, hemoglobin and wbc levels and level of blast cells found in the blood.
You may still want to opt for a 2nd opinion from another institute just to confirm. But your current H/O is giving you the facts based on the analysis of your bmbx.
Quite frequently, these types of blood cancers are discovered completely by chance…with blood work before surgery or routine bloodwork with a physical. They can start slowly with no symptoms and progress silently over time, catching the patient and doctor off guard. I went through the same thing with AML.
Here is the article I mentioned about diagnosing ET/MF and the differences/similarities.
From Patient Power:
“Essential thrombocythemia (ET) and myelofibrosis (MF) are two types of myeloproliferative neoplasms (MPNs) with similar symptoms. Understanding the differences between the two conditions allows for better disease management. ET results in the excessive production of platelets” https://www.patientpower.info/myeloproliferative-neoplasms/essential-thrombocythemia-vs-myelofibrosis
I hope at some point you come to a point of resolution and are able to trust in your doctor’s education and experience to help you start the treatment you need to remain healthy.
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Hi 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.
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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Hug
2 ReactionsHi 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.
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.
Make that HealthTree Foundation. Typo
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.
Hi @bmarkable. I believe the medication Dr. Tefferi was talking about in the video is Imetelstat.
People with MF or other myeloproliferative neoplasms have an elevated telomerase activity. This drug, Imetelstat (Rytelo) is a telomerase inhibitor.
Two articles for you to read if you’re interested.
From Pub Med:
https://pubmed.ncbi.nlm.nih.gov/35510486/
From BloodCancersToday.com:
https://www.bloodcancerstoday.com/post/impactmf-ongoing-assessment-of-telomerase-inhibitor-for-relapsed-or-refractory-myelofibrosis
What treatments are you currently receiving for your MF?
Hi Lori,
Thanks for your detailed response. My hemoglobin is 12.7 so fine in that.
Hi, in this video, it is not clear what new drug or treatment this Doctor is referring to, which he says attempts to make Myelofibrosis regress, instead of just masking tge symptoms. Please say. Thanks. THURS, 13 March
@1pearl, I found another member diagnosed with MF with the CALR mutation and have put the link to her reply below:
@sharonm2023 https://connect.mayoclinic.org/comment/1209703/
~It’s in the discussion:
What are treatments for myelofibrosis: https://connect.mayoclinic.org/discussion/mylofibrosis-1/
~~~~
Digging around for more info for you, I found another article that might have some merit to read through with regards to the differences between ET and MF. (Posted below)
I know you’ve gotten off to a bad start with your doctor and don’t really feel you can trust her. But it also appears you’re locked into this clinic for a while with your insurance. So until you can change clinics, I just want to pop back into this conversation because I can feel your frustration with not understanding what’s going on and why the diagnosis was changed so abruptly from ET to MF. ET can progress to MF.
In fairness to your doctor, she made the decision of ET based on your extremely high platelet count of well over 1 million. Without treatment it can be dangerous to have platelet levels that high with a risk of stroke, pulmonary embolism, DVT, etc.. So she recommended starting HU to knock that cell count down to a more normal level and keep platelet production under control.
After seeing the results of the bone marrow biopsy she was able to narrow down the diagnosis to MF. The numbers and types of cells in the marrow aid in the diagnosis, along with the examination of the marrow itself. From my understanding of MF, there are characterizations that help define a diagnosis such as evidence of bone marrow megakaryocytic proliferation (an over abundance of the large platelet producing cells in the marrow), fibrosis of the webbing in the marrow ( abnormal cell production with MF causes scar tissue to replace bone marrow) and presence of JAK2, CALR, or MPL mutation. That really did just roll off the tip of my tongue!😅 I have a friend with MF and we share a lot of info and amazed with the new vocabularies we’ve picked up after the age of 65.
The risk assessment (scoring test) results your doctor was waiting a few weeks ago that you mentioned, would help determine the type of treatment for your specific case. There are a number of factors taken into consideration such as age, symptoms, hemoglobin and wbc levels and level of blast cells found in the blood.
You may still want to opt for a 2nd opinion from another institute just to confirm. But your current H/O is giving you the facts based on the analysis of your bmbx.
Quite frequently, these types of blood cancers are discovered completely by chance…with blood work before surgery or routine bloodwork with a physical. They can start slowly with no symptoms and progress silently over time, catching the patient and doctor off guard. I went through the same thing with AML.
Here is the article I mentioned about diagnosing ET/MF and the differences/similarities.
From Patient Power:
“Essential thrombocythemia (ET) and myelofibrosis (MF) are two types of myeloproliferative neoplasms (MPNs) with similar symptoms. Understanding the differences between the two conditions allows for better disease management. ET results in the excessive production of platelets”
https://www.patientpower.info/myeloproliferative-neoplasms/essential-thrombocythemia-vs-myelofibrosis
I hope at some point you come to a point of resolution and are able to trust in your doctor’s education and experience to help you start the treatment you need to remain healthy.
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