Hello Connection Community - for those that have Myelofibrosis - my particular type is primarily anemia- do you have a racing or what feels like a stronger heart beat? Also- do you feel your spleen now? I’m not on any meds so curious what is a symptom or not.
I am not of any help as I really do not know what “type” of myelofibrosis I might have. I do not have anemia or feeling of racing heart. I do not have any symptoms. I do have high platelets and my bone marrow biopsy I asked to have showed unusual megakyocytes and fibrosis 1-2 of 3. I have CALR1 on NGS. I do not feel my spleen and do not have enlarged spleen on pelvic CT scan done June2025.
It seems like of the blood disorders with Myelofibrosis there are different versions. I started out with high platelets in 2008 and a Bone Marrow Biopsy that was inconclusive. Now 17 years later anemia and a second bone marrow biopsy that diagnosed Myelofibrosis. I’ve read that one issue with anemia is it strains the heart as your body is asking for more oxygen. I see a physician this week so will let you know what I find out. Thank you for keeping the conversation going!
Thank you for posting. Great to had 17 years before getting myelofibrosis. Does that mean you had ET for 17 years since you wrote that your platelets were high in 2008. Did they determine your mutation? I do not think CALR was even known of in 2008.
Please do share what you learn in a week from your physician visit.
Thank you for posting. Great to had 17 years before getting myelofibrosis. Does that mean you had ET for 17 years since you wrote that your platelets were high in 2008. Did they determine your mutation? I do not think CALR was even known of in 2008.
Please do share what you learn in a week from your physician visit.
Thank you- I will! I am hoping to have a BMT soon. I’d rather do that than a clinical trial. The bone marrow biopsy done in 2020 was inconclusive - so not diagnosed with anything. When I saw my oncologist hematologist in 2013 my platelets were normal.
Thank you- I will! I am hoping to have a BMT soon. I’d rather do that than a clinical trial. The bone marrow biopsy done in 2020 was inconclusive - so not diagnosed with anything. When I saw my oncologist hematologist in 2013 my platelets were normal.
Hi again @ davi0937,
I must have gotten confused reading your post from what looks like one day ago. Sorry about that! Great to hear you are not diagnosed with anything! Hope you stay that way.
Hi again @ davi0937,
I must have gotten confused reading your post from what looks like one day ago. Sorry about that! Great to hear you are not diagnosed with anything! Hope you stay that way.
You have company as I was diagnosed with that also, but in February 2025. Do you know if you have primary or secondary myelofibrosis? I think you have primary myelofibrosis as no previous diagnosis which is what I am told I have. Do you have more than one mutation on your NGS testing? I have three one of which is CALR1. Did they do risk analysis of your case and what was it found to be? My O/H told me my risk analysis came back low and very low so no bone marrow transplant recommended for me now but may be in the future. So I have an appointment in August to consult with bone marrow transplant specialist. Was a bone marrow transplant recommended to you now?
You have company as I was diagnosed with that also, but in February 2025. Do you know if you have primary or secondary myelofibrosis? I think you have primary myelofibrosis as no previous diagnosis which is what I am told I have. Do you have more than one mutation on your NGS testing? I have three one of which is CALR1. Did they do risk analysis of your case and what was it found to be? My O/H told me my risk analysis came back low and very low so no bone marrow transplant recommended for me now but may be in the future. So I have an appointment in August to consult with bone marrow transplant specialist. Was a bone marrow transplant recommended to you now?
Yes primary but the MD I just saw here at Mayo said it really doesn’t make a difference in treatment. I have SFSR2 mutation which puts me at Intermediate risk unfortunately. It can mean my moving to AML quicker. I see a different MD tomorrow.
Unfortunately, I have never hear of that particular mutation but it would seem like just having one mutation would be better than more. Please share what you learn tomorrow at your different MD visit. It is nice you get appointments so fast! Is it for second opinion or something else?
First appointment went well. This was a discussion about clinical trials and my current status from my June Bone Marrow Biopsy. I had labs done and discussed them with the physician. I meet with a second physician tomorrow morning after an EKG.
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Hi @davi0937,
I am not of any help as I really do not know what “type” of myelofibrosis I might have. I do not have anemia or feeling of racing heart. I do not have any symptoms. I do have high platelets and my bone marrow biopsy I asked to have showed unusual megakyocytes and fibrosis 1-2 of 3. I have CALR1 on NGS. I do not feel my spleen and do not have enlarged spleen on pelvic CT scan done June2025.
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1 ReactionThank you @1pearl
It seems like of the blood disorders with Myelofibrosis there are different versions. I started out with high platelets in 2008 and a Bone Marrow Biopsy that was inconclusive. Now 17 years later anemia and a second bone marrow biopsy that diagnosed Myelofibrosis. I’ve read that one issue with anemia is it strains the heart as your body is asking for more oxygen. I see a physician this week so will let you know what I find out. Thank you for keeping the conversation going!
Hi davi0937,
Thank you for posting. Great to had 17 years before getting myelofibrosis. Does that mean you had ET for 17 years since you wrote that your platelets were high in 2008. Did they determine your mutation? I do not think CALR was even known of in 2008.
Please do share what you learn in a week from your physician visit.
Thank you- I will! I am hoping to have a BMT soon. I’d rather do that than a clinical trial. The bone marrow biopsy done in 2020 was inconclusive - so not diagnosed with anything. When I saw my oncologist hematologist in 2013 my platelets were normal.
Hi again @ davi0937,
I must have gotten confused reading your post from what looks like one day ago. Sorry about that! Great to hear you are not diagnosed with anything! Hope you stay that way.
You are not confused. I was diagnosed with Myelofibrosis in June 2025
Hi again @davi0937,
You have company as I was diagnosed with that also, but in February 2025. Do you know if you have primary or secondary myelofibrosis? I think you have primary myelofibrosis as no previous diagnosis which is what I am told I have. Do you have more than one mutation on your NGS testing? I have three one of which is CALR1. Did they do risk analysis of your case and what was it found to be? My O/H told me my risk analysis came back low and very low so no bone marrow transplant recommended for me now but may be in the future. So I have an appointment in August to consult with bone marrow transplant specialist. Was a bone marrow transplant recommended to you now?
Good morning @1pearl
Yes primary but the MD I just saw here at Mayo said it really doesn’t make a difference in treatment. I have SFSR2 mutation which puts me at Intermediate risk unfortunately. It can mean my moving to AML quicker. I see a different MD tomorrow.
-
Like -
Helpful -
Hug
1 ReactionHi @davi0937
Unfortunately, I have never hear of that particular mutation but it would seem like just having one mutation would be better than more. Please share what you learn tomorrow at your different MD visit. It is nice you get appointments so fast! Is it for second opinion or something else?
Good evening @1pearl
First appointment went well. This was a discussion about clinical trials and my current status from my June Bone Marrow Biopsy. I had labs done and discussed them with the physician. I meet with a second physician tomorrow morning after an EKG.