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Is Essential Thrombocythemia a blood disease or cancer?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (82)Comment receiving replies
Thank you for your answer. It's true they are blood cancers, although they can be slow yet progressive to develop. Because you can live a long life with these blood cancers with treatment, some people think they are merely conditions, but they are not. It's good to take the diagnosis seriously as a result. I had family members tell me unsolicited that I should not worry because I really don't have cancer. Having read through the posts, I'm feeling a bit better about taking the HU although I have not started yet. I'm having blood work done in a week and then will know what my platelet levels are, and how much they might have gone up, and then I will start. I have scheduled a visit at the mayo clinic for a second opinion, first available was late May. Ahead of my visit, I'm trying to prepare by formulating questions. If you have any suggestions, I would love to know.
Replies to "Thank you for your answer. It's true they are blood cancers, although they can be slow..."
Ask what alternatives there are to taking HU.
Is it hereditary, have seen some on here, saying their father had it and also one who said she was third generation. Have been told it isn't . Let me know what they say if you ask please.
I was very hesitant to begin taking hydroxyurea when I was diagnosed with ET. At my doctors insistence, I began taking it when I turned 60. It kept my platelet count within the normal-ish range. I took it for approximately 15 years. Then in 2022 things changed for me. I lost weight for no particular reason. No dieting.etc. My hematologist suspected I had progressed to Myleofibrosis. After bone marrow biopsy it was confirmed.
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A good question is: What symptoms might I have that I should call the office to report. I have had ET for 17 years, and I am still trying to get a straight answer for this!
Also ask if you need to coordinate ET care with hemo if you needed surgery or treatment for something like a heart condition or diabetes. Never know what's around the corner.
If you have really great insurance and are HU averse (saw yr post on another thread), ask about Besremi (interferon injections). They are not without side effects, but some here are doing very well.