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Started Hydroxyurea: How long to see decrease in counts?
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (39)Comment receiving replies
I was diagnosed with CALR Exon 9 Essential Thrombolysis. My platelet count was elevated to 650. Doctor put me on 500 mg HU, seems like the go to meds for this. Its only been approx. 2 weeks of taking med. When I get up in the morning I can hear my heartbeat mostly in my left ear pounding , it seems to go away after an hour or so, but I can still hear it through out the day here and there. Does anyone know or have that also? Also its summer of 2026 I was wondering how come I see no more post after 2024? Also I guess we are the lucky ones? I hear that in The U.S only approx. 5000 diagnosis a years for these type of blood disorders. OBTW I am 70 years of age. I would like to know if people on this thread would put their ages when they had been diagnosed.
Replies to "I was diagnosed with CALR Exon 9 Essential Thrombolysis. My platelet count was elevated to 650...."
@stevie123 Regarding posts from 2024: Your filter (under the page numbers) may be set at oldest to newest rather than newest to oldest. That seems to be the default and I found that to be the case when I first got in here too.
I’m 73 and have been on HU for 30+ yrs for ET. I’ve told much of my health story (nothing has negatively affected how I live my life) previously so I won’t repeat but maybe you can find it by clicking on my name. Anyway, yes, many share their ages (both current and when diagnosed), experiences, test results and treatments as well as their concerns. I’ve shared more based on what I’ve seen others do. One of the most encouraging comments someone else shared here goes something like “ET is a disease/disorder people die with, rather than die of.” I find that very encouraging and I hope you do as well. BTW I’ve never experienced hearing my heartbeat as you described.
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@stevie123
May I ask, are you also taking daily low-dose aspirin? If so, the aspirin's thinning your blood. And thinner blood flows faster. That might be contributing to the pounding you're hearing in your ears. For me, the sound is more like ringing.
I'm not troubled by this! It reminds me that aspirin is helping my platelet-heavy blood to circulate.
Yes, ET is quite rare. Other than here, nobody has any idea what you're talking about, right?
I was diagnosed with ET, MPL-driver, at 69. I'd had elevated platelet counts for three years. My PCP said it was nothing to worry about. Totally ignorant of MPNs, he said my headaches and exhaustion were just part of growing older.
Thank goodness, my oncologist knew otherwise.