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!