Don't know about you, but a trip to the hematologist at the regional cancer center usually gouges a good half day out of my schedule, what with driving in from the sticks and waiting around for the doctor to get done with the really sick people.Writing down my questions ahead of time can get me the heck out of there faster. And, using my hyper-organized control freak super powers, I made a question tree to take with me to every visit. That way, my notes are all organized, and I'll be able to decipher them before my next visit.
You can make your own from the image provided here (click the image and it will enlarge). Or message me at facebook.com/ethrombo, and I'll be happy to send you a Word or PDF file.
Be well!
hello- I have just been diagnosed with ET- Jak2 mutation (575) plaelets, 68- doc wants me to go on hydroxy carbamide butthat freaksme out so I have asked to wait. Thanks for the info
ReplyDeleteWelcome, Eva!
ReplyDeleteWhile I'm sorry to hear about your diagnosis, it is great to make contact with someone else in the same boat.
Did your hematologist feel it was OK to monitor and wait? My doc told me that she'd consider oral chemo if my platelets got much above 800 and/or there was a big spike in the numbers. (Like you, mine are in the 600s.) Right now, it's just a hit of low dose aspirin every day and a blood count every three months.
There's a really good fact sheet on ET and various meds from the Leukemia and Lymphoma Society over at the right. It might make you feel better if you do have to take an oral chemo.
If you'd like, you can tell us more about your story by hitting the "Your Turn" link at right.
Thanks for visiting, and I hope you'll come back.
Jean