Is Essential Thrombocythemia a blood disease or cancer?

I was diagnosed with ET 2 years ago and was told that up until 10 years ago it was considered to be a blood disorder but the world health organisation decided to classify it as a cancer.

How are you doing with the MF? Any change in treatment protocols? I have ET-CALR x 17 years, HU x 6 years. I understand CALR makes me somewhat more likely to develop MF, tho there seem to be genetic variables within CALR mutations that are still not well understood. But my hemo explained that anybody with ET will progress if they live long enough. Thanks for sharing your experiences. It's helpful to know how these things play out for others over decades. So many on here are very newly diagnosed, dealing with that initial shock, and cannot (yet) identify with us long-termers.

I was taking Jakafi for a year and my numbers weren’t changing actually getting worse and I was getting blood transfusions. He decided to put me on Vonjo and I did really well for 6 months. Then the diarrhea began. I had to drop back to 3 pills daily. So not on full dose for past 5 months. Also was low in folic acid so starting supplementing. 2 months into taking folic acid stools are more formed now.

My hematologist continues to say ET and MF are blood conditions. He said they have been reclassified to blood cancers primarily so they can get more funding for research due them being very rare conditions. And low and behold they are getting more funding to develop new medicines

I was very hesitant to begin taking hydroxyurea when I was diagnosed with ET. At my doctors insistence, I began taking it when I turned 60. It kept my platelet count within the normal-ish range. I took it for approximately 15 years. Then in 2022 things changed for me. I lost weight for no particular reason. No dieting.etc. My hematologist suspected I had progressed to Myleofibrosis. After bone marrow biopsy it was confirmed.

I was taking Jakafi for a year and my numbers weren’t changing actually getting worse and I was getting blood transfusions. He decided to put me on Vonjo and I did really well for 6 months. Then the diarrhea began. I had to drop back to 3 pills daily. So not on full dose for past 5 months. Also was low in folic acid so starting supplementing. 2 months into taking folic acid stools are more formed now.

My hematologist continues to say ET and MF are blood conditions. He said they have been reclassified to blood cancers primarily so they can get more funding for research due them being very rare conditions. And low and behold they are getting more funding to develop new medicines

Wow, well thank you kindly for enlightening me. Very interesting indeed. I am a new member here as of yesterday and not sure how to navigate the site as yet so I hope you get this message. Love your username… I am a dancer!

Hi bambii111,

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!