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Essential Thrombocytosis symptoms

Blood Cancers & Disorders | Last Active: Feb 13 1:02am | Replies (170)
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@nohrt4me

The test results I saw 8 years ago merely said "CALR with deletion." Tests with much more info may come thru your patient portal, so a sit-down with your doc is probably in order.

It's pretty customary for doctors to want to talk thru the tests after results come back. If your doc doesn't, you might want to request a consult.

Once the doc translates what it all means, a good question to ask is how often you will need blood monitoring. (Every 3-4 months is pretty typical.) Also how often you should be seen by hemo. (Twice a year is also typical, but I talked mine down to once a year with the proviso that I would be scrupulous about meds and bloodwork.) You might also ask what are some symptoms you should report to the doc.

Take care!

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Replies to "The test results I saw 8 years ago merely said "CALR with deletion." Tests with much..."
1pearl | @1pearl | Feb 3 12:45am

Hi nohrt4me,
Thanks for your quick reply! I guess my O/H knew I would have lots of questions, so she actually gave me a printout of all the alleles tested and which ones had mutations and the percentages of those. So, although the one sit down appointment with her that I had seemed like I just had high platelets and ET and needed Hydrea, with this added information which she presented me with at my sister’s six month oncology follow up visit, I am more confused. She did allow me to have a bone marrow biopsy which I did today and blood work was done after it with results already given on many tests run. My platelets went down again on no treatment as I did not even fill my prescription. Yes, they are more than 400 but my platelets are 411 units lower than first visit less than two months ago! Why are they lowering without treatment is my question. What will my platelets be in another six weeks with no treatment as if they go down another 411, they will be normal? My next appointment with my O/H is in two months.
Thanks for listening and your insights.

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