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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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Hello nohrt4me,
You stated that your doctor put you on a low dose of hydroxyurea. My Wife's doctor said they don't make anything under 500 mg but said that we could cut it in half. When we expressed the written orders on the label requiring that contact with countertops required triple rinsing before additional use, the doctor advised that my Wife take one pill every other day. What was your low dose?
Thanks to you.
Keith
Hello docolton,
My Wife supposedly has PV although many recognize that the WHO is severely lacking in their diagnostic criterion. Upon achieving a normal Hematocrit through phlebotomy alone, my Wife's platelets and white blood cells continued to grow in count. When I sought platelet apheresis and/or leukapheresis I was told I was on my own. I did recognize anagrelide as a potential benefit for platelet numbers. Would you please elaborate on your use, it's effects and outcome.
Thank you/
Keith
Hi, Keith, my dose was 500 mg per day after platelets showed a steady upward trend and were at 800.
It was upped to an additional 3 caps per week after the first year to get platelets to 400s. Levels had stalled in 600s. My onco still calls my dose.
From what I understand, patients who start on lower doses better than those who are given 1,000 mg per day or more.
I actually felt better, more energy when I first started HU. That has kind of dwindled, but I don't feel sick.
Fwiw, I get those little paper pill (souffle) cups from Amazon, dump the caps in those from the bottle, pop the pills in my mouth without touching them, then throw away the pill cup. Prevents handling.
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2 ReactionsUnderstood, however with no options I’m scheduled for first visit and will let them inform me, as no hematologist will ! No malignancy detected, no confirmed diagnosis wait and see is all I have and risk of stroke don’t have any options so it’s worth a shot at this point! Thanks for info!
I am not a farmer but I have ET (essential thrombocythemia). I have had it for 20 years.
I am a 69 yo female and I live in Oklahoma.
The absolute best physician I saw for this diagnosis is Jeanne Palmer MD at Mayo in Arizona. who specializes in this rare cancer. It is rare enough that most cancer physicians may never see it or may only have one or two patients with it.
If the platelets go too high you are at high risk for a stroke. You may also have other symptoms like skin itching and pain.
I take hydrea daily (a pill) to lower the platelets and two 81 mg aspirin daily to prevent stroke and and pain in head and extremities. I also get my blood drawn monthly at my local physician office to make sure that the hydrea dose is working to lower my platelets to a safe level. I hope you get the care you need.
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2 ReactionsI have had ET for 10 years and take the same dosage as you. I have developed other disorders that my physician believes were related to my meds. However, I decided that I would continue because I can manage the other problems to a degree but a stroke really scares me
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1 ReactionSame here biddypoppop.
Everyone is different but I went to Rochester MN, Mayo Clinic and after 2 years of 650 platelets and toxic reactions to drugs ( I was really sick!) Mayo Dr said they treat ET with only aspirin if your platelets are below 1,000. Mine have crept to 1,000 now (maybe, long story) and I can tolerate Jakifi only. I’m taking 20 mg 2x/day plus 81mg aspirin. If you’re not seeing a hematologist then please find one. Feeling good is not good enough if you have a high stroke potential. You’re lucky that your Dr is familiar bc many are not and people die from cardiac arrest or stroke or both. Good luck!
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1 ReactionThat is the same message I got. No treatment except aspirin unless platelets are over a million. So that is what I did. They call us the "millionaire's club". Unfortunately mine rose to 2,000,00. So I was placed back on hydrea. There are exceptions to letting the platelets go to a million. Some people need treatment with cyto reducing medication such as hydrea or Jakifi so it is not a hard and fast rule but generally if you are younger that 65 and no other symptoms the experts MAY recommend aspirin only.
Hi Farmer Jim. I posted a while back. I’ve had ET for at least 30 years and was on hydroxyurea for about 25. Then was switched to Anagralide. Had a bone marrow biopsy and discovered my marrow was not making red blood cells which are what carry the oxygen to the muscles, etc. That makes me weak but otherwise I feel absolutely normal. I don’t read here of anyone having low red blood count or hematocrit. When my hematocrit gets down to 22, I get an infusion of red blood cells which brings my hematocrit back to 24 to 27. and I can function pretty well. This happens every 2 to 3 weeks. This is the “treatable “ part of incurable but treatable. I’m ok with this for the rest of my life (I’m 88 and healthy otherwise). I do wish I had more energy. Does anyone else have low hematocrit???