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.
There is a lot of information but the final comment was:
The patient’s positive CALR mutation analysis is noted.
Overall the current findings are consistent with involvement by myeloproliferative neoplasm with morphological features favoring primary Myelofibrosis.
I hope this answers your question.
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.
There is a lot of information but the final comment was:
The patient’s positive CALR mutation analysis is noted.
Overall the current findings are consistent with involvement by myeloproliferative neoplasm with morphological features favoring primary Myelofibrosis.
I hope this answers your question.
Like you, I was also diagnosed in 2024. My diagnosis, MF, was confirmed by a bone marrow biopsy, pretty much the gold standard for this disease. From there I was referred to an MPN specialist. I would advise you seek out a specialist as our disease is rare and takes someone with advanced knowledge.
I am early in the disease and currently on daily baby aspirin with no significant symptoms.
Hi ideachaser1,
Thank you for your reply. I would really like have a true myeloid proliferative neoplasms specialist, but I am locked into a Senior Advantage Plan until January 1, 2025, as I chose an Advantage Medicare Plan when I just turned 65 pretty recently. I do not feel my current O/H is a specialist in MPNs. Six days ago, she did just send me a memo that I could take baby aspirin after earlier sending me a memo not to take baby aspirin. I never took the Hydrea she prescribed for me on January 10, 2025 at my first visit with her. So I have been taking one baby aspirin daily for six days just fine and I still do not have any symptoms.
I am glad to hear you are doing well.
Like you, I was also diagnosed in 2024. My diagnosis, MF, was confirmed by a bone marrow biopsy, pretty much the gold standard for this disease. From there I was referred to an MPN specialist. I would advise you seek out a specialist as our disease is rare and takes someone with advanced knowledge.
I am early in the disease and currently on daily baby aspirin with no significant symptoms.
Hi ideachaser1,
Thank you for your reply. I would really like have a true myeloid proliferative neoplasms specialist, but I am locked into a Senior Advantage Plan until January 1, 2025, as I chose an Advantage Medicare Plan when I just turned 65 pretty recently. I do not feel my current O/H is a specialist in MPNs. Six days ago, she did just send me a memo that I could take baby aspirin after earlier sending me a memo not to take baby aspirin. I never took the Hydrea she prescribed for me on January 10, 2025 at my first visit with her. So I have been taking one baby aspirin daily for six days just fine and I still do not have any symptoms.
I am glad to hear you are doing well.
Hi,
I am not sure if I have ET or myelofibrosis as my oncologist/hematologist seems to not even be too sure. Honestly, I think I really need to change doctors and start all over on all this which just started for me from blood lab work in mid December 2024. I have no symptoms still but do have elevated platelets for which now she decided I could take baby aspirin. I do have some undetermined form of non painful arthritis for about five years now with two very enlarged non painful joints in my right ring finger and right sterno-clavicular joint which other docs have just said is arthritis and blown it off. I have no other health issues and consider myself very healthy. My chief complaint when I first went to doctor (using this new Medicare Advantage Plan I chose when I recently turned 65) December 16, 2024 was to determine a diagnosis with possible treatment plan for my strange big joints but that has not happened. Instead I am told I have rare blood cancer! My question is how others have been diagnosed and feel comfortable that they have an accurate diagnosis of these conditions. Personally, I do not feel comfortable at all but feel more needs to be checked before plugging in a diagnostic code for me. Thanks for listening and anything you feel comfortable sharing about your experience.
Like you, I was also diagnosed in 2024. My diagnosis, MF, was confirmed by a bone marrow biopsy, pretty much the gold standard for this disease. From there I was referred to an MPN specialist. I would advise you seek out a specialist as our disease is rare and takes someone with advanced knowledge.
I am early in the disease and currently on daily baby aspirin with no significant symptoms.
Hi @dunewalker. Welcome to Connect. Your @name brings images of walking along some of my favorite beaches…which I’m missing right now while looking at the several new inches of out my window! 😅
Having lymphoma and myelofibrosis is a double whammy impacting your immune system’s ability to fight off infections. The HU, will also lower some of your blood numbers, including those all important lymphocytes which fight cancer, foreign viruses and bacteria. So extra precautions can be helpful when trying to stay healthy
You’re enjoying an active and happy lifestyle and that’s really a key to staying positive. Avoiding exposure to infections is a big part of staying healthy when our immune systems are compromised. Not always that easy when we want to be out and about with friends, staying involved.
I mask when out in crowded public places such as grocery stores, meetings, elevators…and intimate settings with family, especially with children around. Opting for less busy times at restaurants is helpful and also avoiding buffet type settings where masses of people have touched the serving spoons or a risk of the food not being kept at an optimal temperature.
I frequently wash my hands and carry a small bottle of hand sanitizer when I can’t. I’m not OCD about it, but if I’m touching door knobs, shopping cart handles, raw food packages, that type of thing, I’ll do a little squirt. Also avoid touching your face is another trick to avoid getting sick.
For UTIs, those things are pesky. I’m sure you already know to drink plenty of water daily. I find that I can drink room temperature water in much greater volumes than if it’s iced. It’s processed easier by the body too. I have a friend plagued by UTIs and at her doctor’s recommendation she’s now taking supplements from https://uqora.com/
Knock on wood, this seems to be helping her. So you might want to look into those products.
And of course, a healthy diet of fresh veggies & fruits high in antioxidants along with lean proteins and avoiding excess sugar helps our body stay in fighting mode. Gut health is also a huge factor in our overall well-being. Try adding a cup of fat free, culture rich, Greek yogurt daily. Avoid the fruit added type because of the large amount of sugar. You can add your own fruit or a small dab of fig jam, blueberry preserves, etc., to make it more palatable.
And lastly, spend time walking those glorious dunes in the fresh air and sunshine! Are you near the ocean?
Thank you, Lori, for your response and suggestions. It’s so gratifying and comforting to now be part of a group that understands the ins and outs of myelofibrosis.
I’ve been dealing with the UTIs for years, taking methenamine twice a day; until this year it has kept the UTIs at bay but I guess with the cancer it’s not quite enough. I will try to follow your precautions more closely and switch to tepid water instead of ice water. And I’ll enjoy the dunes as often as possible - wish you could join me!
Thanks for being a new friend through this.
I’m a 83-year-old female, diagnosed with lymphoma and myelofibrosis (JAK2 mutation) in June of 2024. I’ve been taking hydroxyurea (oral chemo) and continue to live an active and happy life.
I do tire easily and have had two infections already in 2025 (UTI and sinus) so doctor added Vitamin D to my other meds.
Should I be doing more to prevent further infections?
Hi @dunewalker. Welcome to Connect. Your @name brings images of walking along some of my favorite beaches…which I’m missing right now while looking at the several new inches of out my window! 😅
Having lymphoma and myelofibrosis is a double whammy impacting your immune system’s ability to fight off infections. The HU, will also lower some of your blood numbers, including those all important lymphocytes which fight cancer, foreign viruses and bacteria. So extra precautions can be helpful when trying to stay healthy
You’re enjoying an active and happy lifestyle and that’s really a key to staying positive. Avoiding exposure to infections is a big part of staying healthy when our immune systems are compromised. Not always that easy when we want to be out and about with friends, staying involved.
I mask when out in crowded public places such as grocery stores, meetings, elevators…and intimate settings with family, especially with children around. Opting for less busy times at restaurants is helpful and also avoiding buffet type settings where masses of people have touched the serving spoons or a risk of the food not being kept at an optimal temperature.
I frequently wash my hands and carry a small bottle of hand sanitizer when I can’t. I’m not OCD about it, but if I’m touching door knobs, shopping cart handles, raw food packages, that type of thing, I’ll do a little squirt. Also avoid touching your face is another trick to avoid getting sick.
For UTIs, those things are pesky. I’m sure you already know to drink plenty of water daily. I find that I can drink room temperature water in much greater volumes than if it’s iced. It’s processed easier by the body too. I have a friend plagued by UTIs and at her doctor’s recommendation she’s now taking supplements from https://uqora.com/
Knock on wood, this seems to be helping her. So you might want to look into those products.
And of course, a healthy diet of fresh veggies & fruits high in antioxidants along with lean proteins and avoiding excess sugar helps our body stay in fighting mode. Gut health is also a huge factor in our overall well-being. Try adding a cup of fat free, culture rich, Greek yogurt daily. Avoid the fruit added type because of the large amount of sugar. You can add your own fruit or a small dab of fig jam, blueberry preserves, etc., to make it more palatable.
And lastly, spend time walking those glorious dunes in the fresh air and sunshine! Are you near the ocean?
Hi,
I am not sure if I have ET or myelofibrosis as my oncologist/hematologist seems to not even be too sure. Honestly, I think I really need to change doctors and start all over on all this which just started for me from blood lab work in mid December 2024. I have no symptoms still but do have elevated platelets for which now she decided I could take baby aspirin. I do have some undetermined form of non painful arthritis for about five years now with two very enlarged non painful joints in my right ring finger and right sterno-clavicular joint which other docs have just said is arthritis and blown it off. I have no other health issues and consider myself very healthy. My chief complaint when I first went to doctor (using this new Medicare Advantage Plan I chose when I recently turned 65) December 16, 2024 was to determine a diagnosis with possible treatment plan for my strange big joints but that has not happened. Instead I am told I have rare blood cancer! My question is how others have been diagnosed and feel comfortable that they have an accurate diagnosis of these conditions. Personally, I do not feel comfortable at all but feel more needs to be checked before plugging in a diagnostic code for me. Thanks for listening and anything you feel comfortable sharing about your experience.
1pearl, Having faith in your healthcare provider is a great comfort when navigating conditions. I was diagnosed with Polycythemia Vera (PV) in 2018 after a routine blood test. PV is a nasty family relative of ET. I was referred to a cancer care center for more testing. I dreaded walking into a place called the "Cancer Treatment Center." I had the most detailed blood test of my life. I am now on Hydroxyurea 500 mg once a day with baby aspirin every day. I am blessed to have excellent care in my treatment plans and doctors. I turned 65 last year and chose not to enroll in a Medicare Advantage Plan. My hospital, Baptist Health in Elizabethtown, Ky, had a great battle with Medicare Advantage Plans, which resulted in many doctors being marooned on the "out of network" island. My suggestion is to search for doctors that you feel are knowledgeable. Having a feeling of confidence in my treatment has made all the difference. I wish you all the best from the heartland of America, Kentucky.
Connect
Connect
Like
Helpful
Hug
@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.
-
Like -
Helpful -
Hug
2 ReactionsHi 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.
There is a lot of information but the final comment was:
The patient’s positive CALR mutation analysis is noted.
Overall the current findings are consistent with involvement by myeloproliferative neoplasm with morphological features favoring primary Myelofibrosis.
I hope this answers your question.
-
Like -
Helpful -
Hug
1 ReactionHi again ideachaser1,
If you do not mind sharing, what did your bone marrow biopsy specifically say about your diagnosis of MF?
Thanks
Check page 77 of the 2025 Medicare & You. See “When’s the best time to buy a Medigap policy?
-
Like -
Helpful -
Hug
1 ReactionHi ideachaser1,
Thank you for your reply. I would really like have a true myeloid proliferative neoplasms specialist, but I am locked into a Senior Advantage Plan until January 1, 2025, as I chose an Advantage Medicare Plan when I just turned 65 pretty recently. I do not feel my current O/H is a specialist in MPNs. Six days ago, she did just send me a memo that I could take baby aspirin after earlier sending me a memo not to take baby aspirin. I never took the Hydrea she prescribed for me on January 10, 2025 at my first visit with her. So I have been taking one baby aspirin daily for six days just fine and I still do not have any symptoms.
I am glad to hear you are doing well.
Like you, I was also diagnosed in 2024. My diagnosis, MF, was confirmed by a bone marrow biopsy, pretty much the gold standard for this disease. From there I was referred to an MPN specialist. I would advise you seek out a specialist as our disease is rare and takes someone with advanced knowledge.
I am early in the disease and currently on daily baby aspirin with no significant symptoms.
-
Like -
Helpful -
Hug
1 ReactionThank you, Lori, for your response and suggestions. It’s so gratifying and comforting to now be part of a group that understands the ins and outs of myelofibrosis.
I’ve been dealing with the UTIs for years, taking methenamine twice a day; until this year it has kept the UTIs at bay but I guess with the cancer it’s not quite enough. I will try to follow your precautions more closely and switch to tepid water instead of ice water. And I’ll enjoy the dunes as often as possible - wish you could join me!
Thanks for being a new friend through this.
-
Like -
Helpful -
Hug
1 ReactionHi @dunewalker. Welcome to Connect. Your @name brings images of walking along some of my favorite beaches…which I’m missing right now while looking at the several new inches of out my window! 😅
Having lymphoma and myelofibrosis is a double whammy impacting your immune system’s ability to fight off infections. The HU, will also lower some of your blood numbers, including those all important lymphocytes which fight cancer, foreign viruses and bacteria. So extra precautions can be helpful when trying to stay healthy
You’re enjoying an active and happy lifestyle and that’s really a key to staying positive. Avoiding exposure to infections is a big part of staying healthy when our immune systems are compromised. Not always that easy when we want to be out and about with friends, staying involved.
I mask when out in crowded public places such as grocery stores, meetings, elevators…and intimate settings with family, especially with children around. Opting for less busy times at restaurants is helpful and also avoiding buffet type settings where masses of people have touched the serving spoons or a risk of the food not being kept at an optimal temperature.
I frequently wash my hands and carry a small bottle of hand sanitizer when I can’t. I’m not OCD about it, but if I’m touching door knobs, shopping cart handles, raw food packages, that type of thing, I’ll do a little squirt. Also avoid touching your face is another trick to avoid getting sick.
For UTIs, those things are pesky. I’m sure you already know to drink plenty of water daily. I find that I can drink room temperature water in much greater volumes than if it’s iced. It’s processed easier by the body too. I have a friend plagued by UTIs and at her doctor’s recommendation she’s now taking supplements from https://uqora.com/
Knock on wood, this seems to be helping her. So you might want to look into those products.
And of course, a healthy diet of fresh veggies & fruits high in antioxidants along with lean proteins and avoiding excess sugar helps our body stay in fighting mode. Gut health is also a huge factor in our overall well-being. Try adding a cup of fat free, culture rich, Greek yogurt daily. Avoid the fruit added type because of the large amount of sugar. You can add your own fruit or a small dab of fig jam, blueberry preserves, etc., to make it more palatable.
And lastly, spend time walking those glorious dunes in the fresh air and sunshine! Are you near the ocean?
-
Like -
Helpful -
Hug
2 Reactions1pearl, Having faith in your healthcare provider is a great comfort when navigating conditions. I was diagnosed with Polycythemia Vera (PV) in 2018 after a routine blood test. PV is a nasty family relative of ET. I was referred to a cancer care center for more testing. I dreaded walking into a place called the "Cancer Treatment Center." I had the most detailed blood test of my life. I am now on Hydroxyurea 500 mg once a day with baby aspirin every day. I am blessed to have excellent care in my treatment plans and doctors. I turned 65 last year and chose not to enroll in a Medicare Advantage Plan. My hospital, Baptist Health in Elizabethtown, Ky, had a great battle with Medicare Advantage Plans, which resulted in many doctors being marooned on the "out of network" island. My suggestion is to search for doctors that you feel are knowledgeable. Having a feeling of confidence in my treatment has made all the difference. I wish you all the best from the heartland of America, Kentucky.
-
Like -
Helpful -
Hug
2 Reactions