Essential Thrombocythemia: Looking for information and support

I am 59 with MDS. My platelets were bouncing around under 100 after BM transplant.
Doctor ordered 50mg daily PROMACTA tablets and platelet counts went up significantly in a few months.
God bless you. Take comfort that God is in control and all things are possible with Him.

My platelet count has been running between 350 to 400 for the last year. I assume my Oncologist wants to stay with the dosage that works.

Receiving guidance on pregnancy/infertility is a good idea — with your Hematologist-Oncologist and GYN.
From the age of 30, I began to do infertility work, and had a single conception and successful pregnancy almost 8 yrs later. Never once was there any focus on my (elevated) platelets. During those years, I had chronic sinus infections, which coincidentally elevated my platelets.
It’s 35 years later and my ET has been diagnosed and managed. While I’m beyond child bearing and more MDs are aware of ET, I hope that there’s a greater awareness of a correlation between infertility and patients with ET. Additional research and medical education, persistence and courage is all important. I was very lucky.
Good luck to you!

Given your ability to have successfully lowered and stabilized your platelets, why wouldn’t your Dr lower your HU dose?

While this may be scary for you right now, may we all be so lucky to live 92 healthy years and then some. Blessings for many more good continued days and years!

I am 92 and just three weeks ago found problems as a result of a routineCBC. My platelet count is 10, hemoglobin 8.9, white cell 3.0, red cell 2.6, hemacrit 28. At my age, what is my new life expectancy?

I also have MDS/MPN with RS and T.

My platelets shot up to 1,100 in March. Started taking HU 1000 mg a day 7 days a week.

By May my platelets were down to 300. I'm now taking 500mg every other day.

I haven't felt any side effects and am glad the HU worked so well as it is the treatment with the least number of side effects.

I take a 500mg Hydrea tablet 5 days per week and two 500mg tablets on Tuesdays and Fridays. Also a daily 81mg Aspirin. I’ve been on this regimen for five years. My platelet count was easily over 1,000 when I was diagnosed with MDS/MPN-RS-T. On the MPN side my symptoms mirror ET. My platelet numbers now fall in the 300-400 zone so I’m good. Fatigue is an issue but a 30 minute Power Nap every day fixes that problem. Once you get your medicine regimen finalized you’ll probably start feeling better and your Oncologist will most likely stretch out your lab schedule. I used to get labs every two weeks in the beginning. Then once a month after my numbers stabilized. Now I’m on a 6 week schedule.

Sounds like your fatigue has leveled off. That was a great response to HU. Hope it continues and you can lower .your dose,

Eileen

I’m taking 1000mg HU/ day + 81mg aspirin. It’s only been a little over a month, and platelet count has dropped dramatically (700 to 425). I’m 76, have been reluctant to take HU before. I have an appointment with my oncologist on Monday, and hope to adjust the dosage. No side effects that I am aware of!