Essential Thrombocythemia: Making treatment decisions

@jomend0835
Hi George, welcome to the Mayo Clinic Connect! Thanks for sharing the information about your diagnosis and treatment. I’m sorry you have to deal with it at your age. Or any age!
Your feelings of depression are certainly relatable. I think we all feel that at least occasionally. One of the things that I like the most about Connect is the support we receive from other members. We are all different, and our paths are all different in combating disease, but it’s reassuring to hear survival stories and learn about what has been effective for other people. I’ve learned a I have learned a lot from others.
I hope you have a good support system and I am very glad you found us. We all have to fight the good fight.
You mentioned that your hydra dosage has increased. Is this in response to a progression?

Happy to share with u guys ,,
Yes the doctor put me on hydra 500mg daily,,,, from (1.200000) count I went down to 570, I was around that number for a year and then went little above 600 again ,, so the doctor decided to put me on Hydrea 1000 mg daily, now I’m on 550count,, I do my blood work every 3 months and feel good , like I said before just dry skin (arms) and I used to take hot showers, now I don’t tolerate it so much, also I have increase the water intake because I sometimes I feel dehydrated,,,

I have been taking hydra and low dose aspirin now for a year and it keeps my platelets at respectable level with little side effects my advice when taking the hydra capsule do exactly as the instructions advise,when placing capsule in the mouth use a disposable glove and always swallow with some food like banana or some of your meal the idea is to stop the capsule making contact with the inside of your mouth other wise you can experience very bad ulcers as hydra is extremely toxic

My platelets were rising starting in 2017, finally I was diagnosed with ET Jak2 in 2020. Since over 60, I started HU +baby aspirin, first year test results up and down with gut side effects. I've been on HU+aspirin for 3 1/2 years now and personally I'm more afraid of a stroke or heart attack than I am of HU. I've never been a high energy person, so I can't really attribute to ET or HU. I'm just glad there is a way to control those proliferative platelets.

Yes. Been on hydroxyurea for 10 years, 1000 mg a day, significantly lowered my platelet count from 1.1 million to around 450,000. Much safer.
My doctor is trying to reduce my hydroxy meds but I'm apprehensive of the stroke risks so I'm proceeding cautiously.

That's a lot of hydroxy!
Hopefully your doctor will be able to wean your dosage back some, while still maintaining decent counts.
Best wishes!

TY, marty882!

In fact, I'm now up to 10 500-mg capsules per week.

That finally brought my platelet count down into the low 500s.

Yes, I would love to find a dose reduction in my Christmas stocking.

I've had some success so far with increasing exercise, reducing alcohol and attempting to totally reduce all cortisol/stressors in my life.
Fighting the good fight!

BTW, I misread your HU dosage as 2,500mg a day, not a week. My bad!
I'vs been on 1000mg of HU for ten years. Lucky I've not had any side effects except hot feet.
My oncologist has recently dropped my HU in half, waiting for my new platelet count.

I've been on 1,000mg/day of HU for 11 years. My oncologist is the top doctor at a tier one medical center. He recently learned of new research and the dangers of long-term use of HU at a conference and has told me to get off hydroxyurea. He learned that the cancer risk of decades of HU was 3 to 4 times greater than any possible stroke risk.
He backed me down to 500 mg/day for 3 months, then took me totally off HU last week. He said he's had patients with one million and 1.5 million platelet count having no issues whatsoever.
He says the data presented at the conference showed approximately 8 to 10% cancer risk for decades on HU. He said he personally has treated about 40 patients on HU and has had four of them develop cancer.
He says he doesn't really believe that there is that high of a risk of stroke with high platelet count, but absolutely believes in the cancer risk. I told him I'll be concerned about the stroke risk and he said there's no comparison between having a stroke and having cancer.
I am off hydroxyurea for good.