High platelet count: What does this mean?

MPN = Myelo-Proliferative Neoplasms

MPN = Myelo-Proliferative Neoplasms. You can Google MPN.

I am on Hydro 500 mg, twice a day. Also Anagrelide HCL at 0.5 mg. These I am taking 5 times a day. I just feel that I am on chemo overload. I might be able to get the Pegasys injections though as I get funding for my chemo pills. When I was told that I had MDS, I took Revlimid. It was $19,000 a month and that was with a week off to give my liver a break. I got funding for most of it. I will see what my hemotologist says when I see her in 2 weeks.

I believe we are in no win situation as all these drugs can cause other cancers and issues.

I cannot take Anagrelide as I have AFib. A side effect of it is palpitations. It sounds like you are on a very heavy dose of medications.

I have read a lot of reviews on Pegasys and the people seem to do better starting out on very low doses and building up.

This is such a confusing journey. Good luck, Eileen

I have to beg to differ because I don’t believe we’re in a no-win situation with the chemo meds we’re taking. While they can cause cancer or other issues, it’s not a given that they will.
In the meantime drugs buy us precious time that we may not have had otherwise. I’ve gained 4 years because of chemo and a bone marrow transplant. You wouldn’t believe the meds I took during the time of treatment. But I am here and enjoying every day to the fullest because those drugs helped me cheat death for a while longer. ☺️

I know it’s not easy with some of the side effects and the cost, but I really hope you find a good balance with your medications and they bring you a great quality of life!

Lori,
So well said, Thank you. Eileen

Glad your BMT was successful, Lori!

Of six cousins, three of us have had blood cancers. Two had SCT when they progressed to leukemias. One is doing okay six years later. The other died because his heart couldn't take the chemo and anti rejection drugs the transplant required. But he was in a situation where without the SCT he wouldn't make it, and he still had a boy at home.

I am so glad that this option is more widely available now. Due to my age and co-morbidities, it's not something I would pursue, but it has helped many people.

It's my sense that a lot of people with ET have doctors who are mismanaging things. They are making people sick with too much chemo up front, they are not providing good symptom management (often just denying that there even are symptoms), and are offering no support.

Anyone who feels hopeless deserves a better doctor and some emotional support. It makes me sad to see people with a treatable disease feeling so down.

My hemotologist has me on the Hydro and Anagrelide plus a low dose aspirin. I tell her I have heart palpitations with these meds and I can't walk just a short distance and I get winded. She tends to ignore that I'm having these problems. A friend told me she had breast cancer and all the doctors in that medical group had weekly sessions to figure out the best route to go. I want to ask my doctor if the doctors in her practice have these sessions but I'm scared she will get upset with me. If I leave her and find another doctor, they may not do anything more for me. When she took me off Revlimid for MDS, I felt great after about 3 weeks. After a bone marrow biopsy, she told me all of a sudden I didn't have MDS. Unfortunately, the issue with the high platelets kicked in and I'm back to feeling tired and awful. I wish she would try me on 2 low dose aspirin and take me off the other meds for awhile. I have been getting blood tests every 2 weeks for years. Thank goodness I'm on Medicare now.

Hello. My mom has suffered from ET for almost 20 years. She is currently taking HU (high dose) and aspirin. However, for some time she has stopped responding well to these drugs and her platelets do not drop below 1,200,000. What are the treatment methods for this disease in the US, what else can be done to help? In Poland, where we live, only HU and thromboreductin (anagrelide) are available, but my mother feels very bad after this (cardiovascular problems). What do genetic tests for mutations give? Does the presence of a mutation affect treatment?
I will be grateful for any answer.