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What are pros of hydroxyurea vs other methods of lowering platelets?
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (35)Comment receiving replies
Hi debhammel,
Thank you for posting. Yes, I really do want a bone marrow biopsy first to make sure I do not have something g else. It sounds like you have a good doctor. I sent questions to the oncologist/hemotologist I was referred to and my first question was why I was not getting a bone marrow biopsy to confirm my diagnosis. I am still waiting for a reply and so hope I get one from her. I also asked how many patients this group has treated locally here and how many she has treated herself. I just really need to know that in the event I am expected to just take Hydrea without really knowing I have that. Granted ET is the lesser of the evils to have, but I would just really like to know the answer. I am not sure if your age, but I assume similar to mine. If you do not mind sharing, did you have any gene mutation such as JAG2 as that is all I have been tested for and mine is negative.
Replies to "Hi debhammel, Thank you for posting. Yes, I really do want a bone marrow biopsy first..."
Yes, I'm blessed with an amazing care team: a PCP who was astute enough to contact a hematologist/oncologist when she saw my elevated platelets in a blood test, and that same heme/onc who treats me like I'm part of his family (both are members of the University of Maryland St. Josephs Medical Center in Towson, Maryland, which has an amazing culture of medical providers talking to each other to assure their patients receive the care they need). I am 70, was 68 when diagnosed, and I do have the JAK2 mutation. I had no symptoms other than recurring migraines, which disappeared as soon as I started HU and my platelets began dropping.
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Yes, I can sure understand wanting a firm diagnosis before taking meds, and you are right to push for more info.
A diagnosis of some other blood disorder *might* have been ruled out for you by a previous blood test, but the docs don't always explain that very well.
Like you, I was also JAK2 neg 10 years ago. At that time, the other genetic tests were not available (or insurance would not pay, I was never clear which was the case), so diagnosis was confirmed thru bone marrow biopsy. Easy test with minimal discomfort. It does take awhile for results to come back.
A bone marrow biopsy might not be needed if your doc tests for the CALR or MPL mutations. My doc ran those tests as soon as they became available. Again, several weeks' wait for results. But, voila, I did test positive for CALR mutation.
Lesson I learned is that it may take months to go thru each phase of the testing.