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Hi,
I am not sure if I have ET or myelofibrosis as my oncologist/hematologist seems to not even be too sure. Honestly, I think I really need to change doctors and start all over on all this which just started for me from blood lab work in mid December 2024. I have no symptoms still but do have elevated platelets for which now she decided I could take baby aspirin. I do have some undetermined form of non painful arthritis for about five years now with two very enlarged non painful joints in my right ring finger and right sterno-clavicular joint which other docs have just said is arthritis and blown it off. I have no other health issues and consider myself very healthy. My chief complaint when I first went to doctor (using this new Medicare Advantage Plan I chose when I recently turned 65) December 16, 2024 was to determine a diagnosis with possible treatment plan for my strange big joints but that has not happened. Instead I am told I have rare blood cancer! My question is how others have been diagnosed and feel comfortable that they have an accurate diagnosis of these conditions. Personally, I do not feel comfortable at all but feel more needs to be checked before plugging in a diagnostic code for me. Thanks for listening and anything you feel comfortable sharing about your experience.
Replies to "Hi, I am not sure if I have ET or myelofibrosis as my oncologist/hematologist seems to..."
1pearl, Having faith in your healthcare provider is a great comfort when navigating conditions. I was diagnosed with Polycythemia Vera (PV) in 2018 after a routine blood test. PV is a nasty family relative of ET. I was referred to a cancer care center for more testing. I dreaded walking into a place called the "Cancer Treatment Center." I had the most detailed blood test of my life. I am now on Hydroxyurea 500 mg once a day with baby aspirin every day. I am blessed to have excellent care in my treatment plans and doctors. I turned 65 last year and chose not to enroll in a Medicare Advantage Plan. My hospital, Baptist Health in Elizabethtown, Ky, had a great battle with Medicare Advantage Plans, which resulted in many doctors being marooned on the "out of network" island. My suggestion is to search for doctors that you feel are knowledgeable. Having a feeling of confidence in my treatment has made all the difference. I wish you all the best from the heartland of America, Kentucky.
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.
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My husband was diagnosed with myelofibrosis about a month and half ago. During a blood work up he had blood cells showing crazy cells and was sent to oncologist and hematologists, which sent him for a bone marrow biopsy. This did confirm he has myelofibrosis. I think when you get to the right specialist in this rare blood disease you will get the right answers and it will help you understand what is happening. I think sooner than later.