Anyone want to talk about Myelofibrosis?

I just returned from my first 6 month check up at Moffitt Cancer Center near where I live. We are so lucky our mutation is CALR. It is the mutation with the best prognosis with slowest progression.
Go to pvreporter.com. Lots of good info including a list of MPN specialists. You really do need a specialist for this very rare disease.
I still have only light night sweats and sometimes brain fog as symptoms. So minimal my specialist still doesn’t want to start treatment beyond daily aspirin. My diagnosis is Primary MF meaning I did not progress from PV or ET. I’m 78 and live in Orlando, FL. , Moffitt is in Tampa. My Orlando oncologist shares my care with my MPN specialist.
Two other sites I recommend are HealthTre Foundation and a Facebook support group called Myelofibrosis Support Group. The support group is full of people like you and me.
I hope I answered all your questions, reach out any time.

Hi ideachaser1,
Thanks for sharing. I guess what I am asking is do you have megakaryocyte changes and any fibrosis? My BMB says says “consistent with primary myelofibrosis” so my diagnosis got changed to that. My O/H first said I had ET and I asked how she knew that. She said “there is really nothing else it can be” which was obviously wrong with this diagnosis now. How does one get a myeloid proliferative neoplasms specialist as I do not think I currently have one?
Did or do you have any symptoms? Did you ever have prior diagnosis like ET or PV? Are you similarly aged as I recently turned 65? You are the first person I have encountered with CALR mutation and diagnosis of myelofibrosis, so thank you for sharing.

Hi, in this video, it is not clear what new drug or treatment this Doctor is referring to, which he says attempts to make Myelofibrosis regress, instead of just masking tge symptoms. Please say. Thanks. THURS, 13 March

@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/

~~~~
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.

Hello @wellness3070,

Connect members @jfinlay, @djr, @bijou have discussed Jakafi in the past as well; you can view that discussion here: http://mayocl.in/2iPBxwp

I would also encourage you to watch this video of Dr. Ayalew Tefferi discussing potential new drugs for treating Myelofibrosis as well:

Hi ideachaser1,
Thanks for sharing. I guess what I am asking is do you have megakaryocyte changes and any fibrosis? My BMB says says “consistent with primary myelofibrosis” so my diagnosis got changed to that. My O/H first said I had ET and I asked how she knew that. She said “there is really nothing else it can be” which was obviously wrong with this diagnosis now. How does one get a myeloid proliferative neoplasms specialist as I do not think I currently have one?
Did or do you have any symptoms? Did you ever have prior diagnosis like ET or PV? Are you similarly aged as I recently turned 65? You are the first person I have encountered with CALR mutation and diagnosis of myelofibrosis, so thank you for sharing.

There is a lot of information but the final comment was:
The patient’s positive CALR mutation analysis is noted.
Overall the current findings are consistent with involvement by myeloproliferative neoplasm with morphological features favoring primary Myelofibrosis.
I hope this answers your question.

Like you, I was also diagnosed in 2024. My diagnosis, MF, was confirmed by a bone marrow biopsy, pretty much the gold standard for this disease. From there I was referred to an MPN specialist. I would advise you seek out a specialist as our disease is rare and takes someone with advanced knowledge.
I am early in the disease and currently on daily baby aspirin with no significant symptoms.

Hi ideachaser1,
Thank you for your reply. I would really like have a true myeloid proliferative neoplasms specialist, but I am locked into a Senior Advantage Plan until January 1, 2025, as I chose an Advantage Medicare Plan when I just turned 65 pretty recently. I do not feel my current O/H is a specialist in MPNs. Six days ago, she did just send me a memo that I could take baby aspirin after earlier sending me a memo not to take baby aspirin. I never took the Hydrea she prescribed for me on January 10, 2025 at my first visit with her. So I have been taking one baby aspirin daily for six days just fine and I still do not have any symptoms.
I am glad to hear you are doing well.