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Essential Thrombocythemia

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Patient
Patient
ghostgirl1977
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Subject: RE: Essential Thrombocythemia
Date: 03/06/2008

Shaun,

From all the information I've been given from my hem-onc, I'm really confident that right now the best treatment is no treatment. Again, if I were you, I'd schedule a meeting with my doc to just sit and discuss what ET is all about, because it just seems to me they didn't arm you with enough information. I think they have you more worried than you need to be. Everyone's treatment is different, but you do need to feel that you were a part of the decision so you have confidence you're doing the best thing to treat the disease. How often do you have follow up appointments? I have a CBC every other month and see the doctor every 6 months. The last thing I'd want is to have a BMB every year. lol I have a remarkably high tolerance for pain, but I'm definitely not going to raise my hand and volunteer for another one. :)  The bloodwork is sufficient enough because they can monitor my platelet count that way. My counts are all over the charts at times. I've gone as high as 2.5 million, and as low as 890,000. In fact, today is my big 6 month appointment, so I'm excited to see if my numbers have dropped since my last CBC. If you got to the leukemia & lymphoma society's website and do a search for essential thrombocythemia, you'll get a list of articles that will be helpful. There is one titled essential & primary thrombocythemia. (I think it's the very first article that comes up.) I've foud it to be very helpful in understanding my long-term prognosis. Good luck!

 Allison

Messages History for "Essential Thrombocythemia"

  1. Essential Thrombocythemia
  2. RE: Essential Thrombocythemia
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  23. Myeloproliferative Disease Support and Daily Digest
  24. RE: Myeloproliferative Disease Support and Daily Digest
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