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CALR exon 9 mutation w/translocation of chromosomes 10 &13
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (25)Comment receiving replies
Of course you feel discouraged! It's awful when our own blood turns against us.
It's really hard to take that first capsule of HU.
I can only hope that, through this forum, you'll see that many of us have found HU to be really helpful.
For me, it's brought relief from the debilitating headaches and fatigue of ET.
Here's to getting those platelets under control!
Replies to "@daelitesmom Of course you feel discouraged! It's awful when our own blood turns against us. It's..."
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@janemc Thank you. When I was first diagnosed I had a "mehhh" attitude, it's a genetic mutation so there's nothing I can do about it. I've always tried to take a "glass half full" attitude going back to my first spine surgery in 1995 and all subsequent spine surgeries. Maybe it's because of how I was raised, by my maternal grandMOM, and because I'm Gen X BABY I try to not really let others know how I feel. For added fun I also have a boyfriend who gets angry when I'm hurting and he can't do anything about it so I cover. I took care of my Dad through bladder cancer, was his caretaker until he passed. I took care of my neighbor through breast cancer AND ALS. I've always cared for others when their sick or injured and don't do well when I'm the patient.
I am honestly terrified and I know I'll just keep a smile on my face along with a poker face.
I've decided I'm going to start the hydroxyurea 500mg at bedtime, I don't know if that will help with any side effects or if it's I just want to sleep through it.
Wish my MOM was still alive... could really use her advice and just a MOM HUG, time to break out her sweater, put it on, close my eyes and think it's her.