@1pearl, I found another member diagnosed with MF with the CALR mutation and have put the link to her reply below:

@sharonm2023 https://connect.mayoclinic.org/comment/1209703/

~It’s in the discussion:
What are treatments for myelofibrosis: https://connect.mayoclinic.org/discussion/mylofibrosis-1/

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Digging around for more info for you, I found another article that might have some merit to read through with regards to the differences between ET and MF. (Posted below)

I know you’ve gotten off to a bad start with your doctor and don’t really feel you can trust her. But it also appears you’re locked into this clinic for a while with your insurance. So until you can change clinics, I just want to pop back into this conversation because I can feel your frustration with not understanding what’s going on and why the diagnosis was changed so abruptly from ET to MF. ET can progress to MF.

In fairness to your doctor, she made the decision of ET based on your extremely high platelet count of well over 1 million. Without treatment it can be dangerous to have platelet levels that high with a risk of stroke, pulmonary embolism, DVT, etc.. So she recommended starting HU to knock that cell count down to a more normal level and keep platelet production under control.

After seeing the results of the bone marrow biopsy she was able to narrow down the diagnosis to MF. The numbers and types of cells in the marrow aid in the diagnosis, along with the examination of the marrow itself. From my understanding of MF, there are characterizations that help define a diagnosis such as evidence of bone marrow megakaryocytic proliferation (an over abundance of the large platelet producing cells in the marrow), fibrosis of the webbing in the marrow ( abnormal cell production with MF causes scar tissue to replace bone marrow) and presence of JAK2, CALR, or MPL mutation. That really did just roll off the tip of my tongue!😅 I have a friend with MF and we share a lot of info and amazed with the new vocabularies we’ve picked up after the age of 65.

The risk assessment (scoring test) results your doctor was waiting a few weeks ago that you mentioned, would help determine the type of treatment for your specific case. There are a number of factors taken into consideration such as age, symptoms, hemoglobin and wbc levels and level of blast cells found in the blood.
You may still want to opt for a 2nd opinion from another institute just to confirm. But your current H/O is giving you the facts based on the analysis of your bmbx.

Quite frequently, these types of blood cancers are discovered completely by chance…with blood work before surgery or routine bloodwork with a physical. They can start slowly with no symptoms and progress silently over time, catching the patient and doctor off guard. I went through the same thing with AML.

Here is the article I mentioned about diagnosing ET/MF and the differences/similarities.
From Patient Power:
“Essential thrombocythemia (ET) and myelofibrosis (MF) are two types of myeloproliferative neoplasms (MPNs) with similar symptoms. Understanding the differences between the two conditions allows for better disease management. ET results in the excessive production of platelets”
https://www.patientpower.info/myeloproliferative-neoplasms/essential-thrombocythemia-vs-myelofibrosis
I hope at some point you come to a point of resolution and are able to trust in your doctor’s education and experience to help you start the treatment you need to remain healthy.