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Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (201)Comment receiving replies
Hi, I have had Essential Thrombocythemia for over 15 years. I was on Anagrelide, and this kept my platelet levels manageable. If I forgot to take a tablet which I did when I went on holiday once, my levels shot back up. However, once I was back on track, they became manageable again. Recently I had to have a bone marrow test, which showed myelofibrosis, but not all results back until 8th. Not sure how to take this. My new hematologist was very surprised that I had not previously had a bone marrow test done. Waiting for answers is hard.
Replies to "Hi, I have had Essential Thrombocythemia for over 15 years. I was on Anagrelide, and this..."
Sounds exactly like my story without the myelofibrosis. So many results from genetic and bone marrow biopsy. I trusted the old oncologist, new one treats my husband for something else, is in the MYCHART system and more convenient. Best wishes for a good new year!!!
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Waiting for answers for test results is hard! The longer we have to wait for news, the anxiety and uncertainty just keeps growing, doesn’t it? In the forum we have a name for that…scanxiety. Though you’re not waiting for scan results, the anxiety is the same for bone marrow biopsy (BMBX) results. I’ve been there many times and even when I’m not anticipating any chances, until I get the ‘all clear’ I’m antsy.
One suggestion is to not look at the results on your patient portal ahead of time. I know it’s not easy to do! But from experience, there’s often terminology or result content that can be misinterpreted and not necessarily mean anything is amiss.
Were you having a change in symptoms that prompted the BMBX?
Scan-xiety…waiting for test and imaging