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Male 65 year old farmer with thrombocythemia
Would like to connect with other farmers who have been diagnosed with ET. Feel great when there is tractor work to be done on the farm. Does ET have to be treated with drugs or can we treat it with a job we love? Does anyone know what is the worse thing that can happen if not treated? Tiredness? Stroke?
Also, some websites say there is NO CURE. What does that mean? There is a cure for other cancers but not for ET??
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exactly!
Amen to that. The best way is to make sure your docs know exactly you want to live and what you expect. Never hide anything from them. Even when they ask you how much you drink. If it’s a lot just say a lot. Then do what they say
Three years before I was diagnosed with ET, I notice my platelets were elevated. Then year 2 also, by year 3 I asked my PCP why my platelets were elevated and kept rising, then he sent me to hemo. I often wonder if I had not asked, if he would have sent me to hemo or waited a few more years? Who knows?
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3 ReactionsSimilar story. It was a nurse who took care of me during an endoscopy who noticed the platelet levels on my chart (600s) and advised me to push for a diagnosis, God bless her.
30 years?! That's amazing. I have read that the life expectancy for people with ET who are on Hydroxyurea is about 86. But, you're in your 60s, so...
I'm 74 this October and have had ET, treated with Hydroxyurea since I was 62. I found a old medical record of mine that clearly shows my platelet count was over 400,000 in 2004, when I was 52. It had been circled by a doctor or a lab tech, but no one had ever said anything to me about it. So, 10 years later, after being hit by a bicyclist, my bloodwork showed my platelet count was in the millions that day!
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1 Reaction@garyr443
Have you not had any bad reactions to HU in the 12 years. I’ve only been in for a month and my mouth throat and stomach seem to burn. Also more dizzy. Only take every other day but know my doc wants to up to bring platelets down. At about 850k right now.
@susi1950 Well, I haven't experienced the symptom you mentioned, but I have had rosacea. At the time it first appeared, I assumed it was from being out in the sun, but I had also attributed it to "mask rash" during and after the pandemic. Since I had a rosacea flare up just a few days ago, I am now wondering if it is the Hydroxyurea. I used aloe vera gel yesterday and it has relieved the itching and most of the redness. Other than that, I seem to tolerate the HU well.
@susi1950 One thing I neglected to mention: the Hydroxyurea's worst side effect: it destroys some of my red blood cells, so my red cell count is always low and I have anemia as a result.