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Posts (14)

Jun 27, 2017 · Essential Thrombocythemia in Blood Cancers & Disorders

That is scary stuff. Seeing that you posted back in December what have you learned? How did the cancer testing turn out? I hope it all came out negative. I think knowing that ET has a habit of turning to leukemia is one of scariest things.

You say they did random phlebotomies? I have never heard about that as a treatment. Can you talk about that a little bit.

Apr 30, 2012 · Essential thrombocythemia in Blood Cancers & Disorders

I am currently on aspirin only, told no need for any chemo type of drugs as long as I have no complications and stay active.

Apr 30, 2012 · Essential Thrombocythemia in Blood Cancers & Disorders

I have only known I had it for almost 2 years. I dont have any children yet but when talking to the doctors at Mayo I was told it was not something that would be passed on to children. Bone marrow transplant seems to make the most sense to cure the illness but certainly a very risky procedure.

Apr 30, 2012 · Essential thrombocythemia in Blood Cancers & Disorders

Thanks for posting. I hope you have heard back from Mayo by now and that they will be able to see him. I completely understand him not wanting to take medications because of wanting a family, I am in much the same situation. There is research being done through Mayo that lowering the platelet count is not needed unless complications are present such as clots or abnormal bleeding. Let us know what you find out.

Jan 12, 2012 · Essential thrombocythemia in Blood Cancers & Disorders

I am glad to hear from you!!! I too am interested in hearing from people who have been diagnosed young, i was 27 which is young compared to everything I have read from all the doctors I have talked too so 16 is REALLY young. I am glad her counts have been stable under 1 million. Do you know why they dropped from over a million? I plan to stay as far away from the chemo for as long as possible. I hope she too can stay away from it for a long time.

So far everything for me has been unremarkable. I still would have no idea i had the illness if I hadnt had the blood work. Does your daughter have any symptoms? Has your daughter been to Mayo Clinic?

Jan 6, 2012 · Essential Thrombocythemia in Blood Cancers & Disorders

I have done a lot of research on ET since I was diagnosed and have read about bone marrow transplants being done for it. From everything I have seen a bone marrow transplant is an absolute last resort and is not a guaranteed cure plus there are TONS of risks with it.

Dec 14, 2011 · Essential Thrombocythemia in Blood Cancers & Disorders

I am glad to hear you are going out to Mayo clinic, it is a great place. I have read a bit about myelofibrosis and understand it can be a natural progression of the ET regardless of what treatment you choose. Keep us posted on what happens and what treatment they recommend, I will send some prayers your way.

Nov 13, 2011 · Essential thrombocythemia in Blood Cancers & Disorders

Thanks for the information, I would love to get those links you mentioned. You are right, since this is rare there is really very little information out there. I will see if if can figure out how you can email those.