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What to look for if ET is progressing to something else.
Blood Cancers & Disorders | Last Active: Jul 16 10:02am | Replies (10)Comment receiving replies
Hi,
I was diagnosed with ET January 2025 after routine physical from high platelets in lab work. I made the mistake of asking for a bone marrow biopsy which was done in February. I have CALR1 mutation after being checked for JAK2 and rheumatoid factor which are negative. Then my O/H changed my diagnosis to primary myelofibrosis in February 2025. I still have high platelets which fluctuate a lot on their own on my labwork. I take only low dose daily aspirin. I feel fine with no symptoms and lots of energy as I always have had. I have not got a big spleen, have normal red cells and hemoglobin on labs, but high platelets and white cells 12.9 which is above normal 11.
So, just do not ask for a bone marrow biopsy and keep feeling fine would be my advice. I have little faith in my O/H to be honest.
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Hi @1pearl, I know in retrospect you’re feeling that you shouldn’t have gotten the bone marrow biopsy (bmbx) because your condition hasn’t changed. But from having leukemia myself, I think having this test, for you, will be a valuable baseline from which to watch for any potential progress of your condition and should actually bring a sense of relief that you’re not having serious issues right now.
I’d wished I had one much earlier, maybe it would have given me an opportunity to reduce my progression to AML. This test for you, also gave your oncologist a better picture of what’s going on inside your bone marrow. That’s why she was able to change your initial diagnosis from ET, with your excessive platelet count, to MF (myelofibrosis) which is still part of the same underlying condition of myeloproliferative neoplasms. It’s not that she made a mistake earlier, but the biopsy gave her much more valuable information on which to base the diagnosis.
MPNs, with the involvement of specific mutations, can cause proliferation of blood cells such as red cells (PV) or platelets (ET). The damage from the overproduction, over time can result in scarring of the marrow. This changes the soft spongy marrow tissue and it becomes very fibrous, which is called MF or myelofibrosis.
You’re fortunate to not have obvious symptoms but it doesn’t change the fact that your bmbx showed evidence of MF along with elevated platelets and white blood counts. Over time, MF can cause unusually high levels of white blood cells. But many of the cells are defective and don't work the way they should, which can weaken the immune system. So your doctor will want to monitor your labs to make sure nothing changes.
I’m sorry you don’t have much faith in your oncologist. I really hope you’re able to make changes in your insurance in the future so that you’re free to seek another provider. But we really have to be careful when telling others not to ask for a testing such as a bone marrow biopsy when they can be extremely valuable tools for our doctors.