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@nohrt4me

Not a farmer, but I can see the cornfield from my house! Worst things that can happen if you let it go:

--Stroke
--Pulmonary or coronary embolism
--Deep vein thrombosis, or tiny clots that block up veins in liver
--Platelets get too high and cause vonWillebrand Syndrome and you have internal bleeding
--Your spleen enlarges and causes eating problems

Doc should be evaluating your individual risks depending on age and driver mutation. I am 70, female, CALR+, and was only on baby aspirin between ages 55 and 63, then dr added a low daily dose of hydroxyurea. Platelets have been stable for 7 years, very minor side effects.

Some docs are using interferon injectables on older patients like us. There's a possibility this reduces progression, but older patients experience higher rates of depression with it. Ask about it.

You can also ask doc about what you can do with diet/exercise to control general clot risks. GP is often better at helping with this than the oncologist.

The "cure" is a stem cell transplant, but you have to be on your way to leukemia before they recommend it, and a lot of people don't survive that. Two cousins had it, one died of heart complications, the other got 10 more good years but side effects from maintenance drugs are catching up with him now.

Fatigue is my biggest problem and sorrow because I was always real high energy. But I have had to slow down. I tried to power through fatigue and it doesn't work. You end up exhausted, making mistakes, and alienating people. Decide what's important for you to get done in a day. Do that and learn to be grateful when you have a great day and feel like doing more.

As chronic illnesses go, there are way worse ones.

All this is just my take, and everybody is different. Take care!

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Replies to "Not a farmer, but I can see the cornfield from my house! Worst things that can..."

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