I've been on hydrea 500mg for about 6 months, platelets were over 900 and after going up and down the seemed to settle around 560, today they are 707, have to go back in 3 weeks to check again. Does anyone else look at all the numbers they tell you not to be concerned about, and are concerned anyway? This is such a rollercoaster.
Have had high platelet counts for over 25 years. Was taking Anagrelide for many years. Tried Hyderabad but I couldn’t tolerate. Once JACK 2 discovered, went on Jakifi and platelets have been under 500 since. My oncologist wants them preferably under 400 but I will be happy with 500. I always check my blood counts (now done every 3 weeks). I am very anemic so if they continue under 8, may need blood transfusions. Also have stage 3 kidney disease so have to be careful with my diet
Today my platelets were 798, they keep going up. So, the plan is to double the dose of 500mg on Monday, Wednesday and Friday and check again in about a month and see if that helps. I think the most frustrationg thing is that there is nothing I can do to make it better. If you are diabetic, you can change your diet and maybe that will make a difference. If you have some other type of cancer, they can cut it out and maybe that will stop it. We just keep getting our blood work and hope for the best. Having a glass of wine, my doc says it won't hurt.
You, too Karen!
Wow, that is high! I have an appointment tomorrow, so I'll see where they stand then. Hang in there, it's about all we can do.
Hi Karen. My ET has been a roller coaster -- a graph of my platelet levels looks like the Alps! I am usually between 800 and 1400. My doctor added Interferon injections once a week, in addition to hydroxy. I can't say yet that it has been a winner, but a lot of Hydroxy can also cause anemia.At least I am sometimes below a million!