I have CALR mutation only and feel just fine to this day, but I do have high platelets, so I take baby aspirin now once my O/H cleared me to take it. I am 65. After a routine blood test on my physical in December 2025, my O/H insisted I had ET on 1/10/25 and then insisted it changed to MF on 2/10/25 after I actually asked HER for a bone marrow biopsy which came back very low risk and low risk on their “best current” risk assessments. I have no pain but two enlarged swollen joints that perplexes my rheumatologist that I was sent to see. I have no risk factors, so it really does not matter if doctors considers what I have as ET of MF in my opinion. My O/H admitted there is no drug to work on just on high platelets alone as all their meds lower ALL cell counts meaning Hydrea could lead to leukemia progression. My labs showed all my cells were decreasing on my bone marrow biopsy day but all went back up on my two labs done after them for two months strangely enough on me taking no meds and nothing by me doing differently as I eat and live a healthy lifestyle always and plenty of daily exercise with my super exercise conscious daughter who insists upon us doing it!
I believe each person needs to take the meds they feel are necessary and helpful for them. If a person has comorbidities, such as high BP and symptoms, they may see benefits to trying meds like Hydrea. However, those who post that Hydrea keeps one from advancing to MF or protecting their bone marrow, they may want to read about that as it is not true! There is no cure and if our condition advances to low blood counts, those levels lead towards leukemia and leading to needing a bone marrow. transplant, otherwise called a stem transplant, as that is the only thing that can cure the situation. Unfortunately the best success with that is 30 to 60 %.
I think each person needs to really think about what they believe will help them live their best the longest life and not judge others for their decision. Please do not spread misinformation without checking out the truth and what one is saying is my advice.
My best wishes for all no matter what their blood labs, diagnoses, and doctors advise them of having without another expert opinion as well as what they as they patient think. Educate yourselves!
Stay positive, hopeful, believe in what you feel and know the truth by educating yourself and asking questions, and be happy each day!
"I think each person needs to really think about what they believe will help them live their best the longest life and not judge others for their decision."
I agree 100%, 1pearl.
MPNs are poorly understood, and it's really difficult to know what's best.
I feel you're saying that I've "spread misinformation." So please allow me to say, my information came straight from my oncologist. Upon diagnosis, he told me that if I didn't take HU, my bone marrow would be depleted. And he warned that bone marrow transplants have a low success rate, just as you have said.
In my own case, HU has brought relief from ET's exhaustion and headaches. For me, it is working.
I understand other doctors say other things, and other people may make different choices.
If my comments have made anyone feel disrespected, I sincerely apologize.
@luvs2dance Thank you for sharing. I'm sorry to hear that it has progressed to Myelofibrosis. How are you feeling now? Did your treatment change in any way? Did your weight stabilize?
These progressions are worrisome, and I wonder why they progress when they are being treated with HU.
Yes I stopped losing weight and gained back about half. I am doing pretty well. Functioning as a fairly normal person. Less energy but also trying to remember I am 77 so there’s that too.
Oh, boy, I am sorry to hear about the Vonjo. The stool troubles can be so demoralizing. Glad to hear you've had some improvement with folic acid. Thinking about you!
Thank you. I can report that after taking Folic Acid supplements my bowel issues are getting back to being more normal. My doc thinks outside the box so I know I am getting great care!
Quality of life versus quantity of life!
Hemo oncologists in the US have differing opinions about what ET is and how to treat it. Most offer minimal info to patients. This accounts for differing understanding among ET patients and misinformation or conflicting info among patients.
My understanding is that HU only lowers platelet production and thereby helps prevents strokes, clots, and spleen enlargement. It may also reduce effects on liver and kidneys, but I'm fuzzy on that. More ET patients would take Besremi if they could afford it. It is used way more widely in Europe, especially in patients under 40.
Not nearly enough hemos counsel ET patients about how diet and exercise can reduce overall stroke risk or relieve fatigue or other symptoms. And they don't do a great job talking about progression, increased risks of sun exposure, or decreased immunity.
Thank you. I can report that after taking Folic Acid supplements my bowel issues are getting back to being more normal. My doc thinks outside the box so I know I am getting great care!
Quality of life versus quantity of life!
"I think each person needs to really think about what they believe will help them live their best the longest life and not judge others for their decision."
I agree 100%, 1pearl.
MPNs are poorly understood, and it's really difficult to know what's best.
I feel you're saying that I've "spread misinformation." So please allow me to say, my information came straight from my oncologist. Upon diagnosis, he told me that if I didn't take HU, my bone marrow would be depleted. And he warned that bone marrow transplants have a low success rate, just as you have said.
In my own case, HU has brought relief from ET's exhaustion and headaches. For me, it is working.
I understand other doctors say other things, and other people may make different choices.
If my comments have made anyone feel disrespected, I sincerely apologize.
Pich A, Beggiato E, Godio L, Riera L, Francia di Celle P, Lanzarone G, Benevolo G. Bone marrow morphological features and therapy in patients with Philadelphia-negative neoplasms. Expert Rev Hematol. 2021 Sep;14(9):841-850. doi: 10.1080/17474086.2021.1967138. Epub 2021 Aug 20. PMID: 34384330.
Bone marrow morphological features and therapy in patients with Philadelphia-negative neoplasms: Expert Review of Hematology: Vol 14 , No 9
This article explains what is thought and about Hydrea.
Maybe your doctor should look on CDC, NIH and World Health Org.....
In hematology, essential thrombocythemia (ET) is a rare chronic blood cancer (myeloproliferative neoplasm) characterised by the overproduction of platelets (thrombocytes) by megakaryocytes in the bone marrow.[3] It may, albeit rarely, develop into acute myeloid leukemia or myelofibrosis.[3] It is one of the blood cancers wherein the bone marrow produces too many white or red blood cells, or platelets
Maybe your doctor should look on CDC, NIH and World Health Org.....
In hematology, essential thrombocythemia (ET) is a rare chronic blood cancer (myeloproliferative neoplasm) characterised by the overproduction of platelets (thrombocytes) by megakaryocytes in the bone marrow.[3] It may, albeit rarely, develop into acute myeloid leukemia or myelofibrosis.[3] It is one of the blood cancers wherein the bone marrow produces too many white or red blood cells, or platelets
Honestly, I really do not think my O/H knows if I have ET or Myelofibrosis. I do have something as I have high platelets but no symptoms and no underlying medical conditions. I feel very blessed after reading about so many symptoms others with MPNs have.
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"I think each person needs to really think about what they believe will help them live their best the longest life and not judge others for their decision."
I agree 100%, 1pearl.
MPNs are poorly understood, and it's really difficult to know what's best.
I feel you're saying that I've "spread misinformation." So please allow me to say, my information came straight from my oncologist. Upon diagnosis, he told me that if I didn't take HU, my bone marrow would be depleted. And he warned that bone marrow transplants have a low success rate, just as you have said.
In my own case, HU has brought relief from ET's exhaustion and headaches. For me, it is working.
I understand other doctors say other things, and other people may make different choices.
If my comments have made anyone feel disrespected, I sincerely apologize.
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5 ReactionsI agree! Everyone is entitled to their own opinion. Also belief plays a role as well.
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5 ReactionsYes I stopped losing weight and gained back about half. I am doing pretty well. Functioning as a fairly normal person. Less energy but also trying to remember I am 77 so there’s that too.
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Hug
3 ReactionsThank you. I can report that after taking Folic Acid supplements my bowel issues are getting back to being more normal. My doc thinks outside the box so I know I am getting great care!
Quality of life versus quantity of life!
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Helpful -
Hug
5 ReactionsHemo oncologists in the US have differing opinions about what ET is and how to treat it. Most offer minimal info to patients. This accounts for differing understanding among ET patients and misinformation or conflicting info among patients.
My understanding is that HU only lowers platelet production and thereby helps prevents strokes, clots, and spleen enlargement. It may also reduce effects on liver and kidneys, but I'm fuzzy on that. More ET patients would take Besremi if they could afford it. It is used way more widely in Europe, especially in patients under 40.
Not nearly enough hemos counsel ET patients about how diet and exercise can reduce overall stroke risk or relieve fatigue or other symptoms. And they don't do a great job talking about progression, increased risks of sun exposure, or decreased immunity.
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Hug
8 ReactionsYes, quality of life! Agree!
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5 ReactionsMy doctor told me it’s not cancer, it’s a blood disease/disorder.
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1 ReactionPich A, Beggiato E, Godio L, Riera L, Francia di Celle P, Lanzarone G, Benevolo G. Bone marrow morphological features and therapy in patients with Philadelphia-negative neoplasms. Expert Rev Hematol. 2021 Sep;14(9):841-850. doi: 10.1080/17474086.2021.1967138. Epub 2021 Aug 20. PMID: 34384330.
Bone marrow morphological features and therapy in patients with Philadelphia-negative neoplasms: Expert Review of Hematology: Vol 14 , No 9
This article explains what is thought and about Hydrea.
Maybe your doctor should look on CDC, NIH and World Health Org.....
In hematology, essential thrombocythemia (ET) is a rare chronic blood cancer (myeloproliferative neoplasm) characterised by the overproduction of platelets (thrombocytes) by megakaryocytes in the bone marrow.[3] It may, albeit rarely, develop into acute myeloid leukemia or myelofibrosis.[3] It is one of the blood cancers wherein the bone marrow produces too many white or red blood cells, or platelets
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Helpful -
Hug
7 ReactionsHonestly, I really do not think my O/H knows if I have ET or Myelofibrosis. I do have something as I have high platelets but no symptoms and no underlying medical conditions. I feel very blessed after reading about so many symptoms others with MPNs have.
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Helpful -
Hug
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