1. < Blood Cancers & Disorders

Male 65 year old farmer with thrombocythemia

Posted by farmerjim @farmerjim, Aug 9, 2023

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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lynnevb | @lynnevb | Sep 4, 2023
In reply to @nohrt4me "Thanks for that info. I like your procedural outline. I always have outlines doped out for..." + (show)
@nohrt4me

Thanks for that info. I like your procedural outline. I always have outlines doped out for my doctors with status of my many ailments before any visit: scoliosis/mobility, asthma, blood pressure, ET, mitral valve prolapse, skin rashes, thyroid, etc. Stick to what is observable and measurable. I never tell them I have generalized pain or anxiety. That messes up the little decision trees they use, they don't schedule enough time to hear it, and it gets you labeled as a nutcase.

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exactly!

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bj87 | @bj87 | Sep 4, 2023
In reply to @nohrt4me "I don't want to be my own PCP, thanks, and I respect my doctors' knowledge. I..." + (show)
@nohrt4me

I don't want to be my own PCP, thanks, and I respect my doctors' knowledge. I do think that providing clear, measurable info to your doc gets you better care, though. And you have to keep expectations realistic. They can't fix everything, and effort is required on our part.

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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

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1995victoria | @1995victoria | Sep 4, 2023

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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nohrt4me | @nohrt4me | Sep 5, 2023
In reply to @1995victoria "Three years before I was diagnosed with ET, I notice my platelets were elevated. Then year..." + (show)
@1995victoria

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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Similar 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.

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