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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
@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.
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@daelitesmom
I'm sorry you've been through so much! And I'm really sad you don't have abundant love and support all around you.
While technically HU is a chemo drug, it's in a different category altogether from infusions that make people sick and miserable (such as your neighbor may have had).
HU is used by hundreds of thousands of us with ET and other blood cancers, as well as many, many more with sickle cell anemia. It's even used to treat oral cancers. It's been used for decades. It's widely available and pretty inexpensive.
While HU can cause problems for some people, it's what doctors turn to first for ET.
ET can't be shrugged off, although wouldn't we all like to do exactly that!
ET makes us exhausted. It gives many of us blinding headaches. Even worse, it depletes our bone marrow.
By suppressing ET's manic overproduction of platelets, HU helps us with all of that.
Everyone is different, so you'll just need to give it a try.
Speaking for myself: I've been taking a whopper dose of this stuff for more than two years, with no ill effects whatsoever.
If you like milk -- it's a great way to wash down those capsules! I like to never take HU (or my daily aspirin) on an empty stomach. Finally, as I learned from nohrt4me here on this forum: Drink water! Lots of water!