Total junk mode

Hello! 

Today I finally get to go home after a two week stay in Seattle. Graft vs Host of the liver struck hard and I’m really struggling with steroid issues.

Lack of sleep, major bloat, and some rage. It’s getting better now thank goodness! 

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Oh no, I don't know what that is but it sounds crappy. You will be recovering from home now? You don't have a reoccurrence of Myeloid Leukemia I take it. I hope all these issues calm down for you so you can begin living normally again and experience pleasures. We are with you all the way. Got Bless you.
No, luckily it is not a reoccurrence with AML. This is just one of the nasty side effects which can happen when my donor cells attack certain areas of the body. It’s very difficult to heal in a non linear fashion but it makes the good and healthier times so much more enjoyable. Bless you Deborah!
We have another member here who has GVHD (or HVGD?? I know they are separate & distinct from each other but I can't seem to get his straight). He is Stephen if you want to connect. he has not had recurrence either.
Hello Marcia, yes GVHD is common once a patient has had a transplant. Luckily mine is passing for now :)
Marcia likes this comment
Hi Brittany,

Sorry to hear about GVHD flare up. I also had to take prednisone for GVHD in my gut. How much are you taking now and how long is the doctor going to keep you on steroids? I was on prednisone for 5 months and had a number of side effects, including chipmunk cheeks, lack of sleep, being constantly hungry, muscle loss and double vision. It's hard dealing with these side effects. Send me a private message if you want to talk about GVHD.
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Vital Info

Posts

April 29, 2018

Washington

December, 1988

Cancer Info

Acute Myeloid Leukemia

Acute Myeloid Monocytic Leukemia

February 21, 2017

No

Sorafinib (Nexavar)

Yes

The days when it takes every single moment to fight to live.

To fiercely show the people I love how much I love them. Also to really live my days because I had to fight so very hard for them.

I appreciate any support I can get. I’m trying so hard to fight with grace and fiercely!

Grace, to allow me to try my hardest and accept me where I am in my journey.

Seattle Cancer Care Alliance

Try to stretch and walk each day to keep your mobility.

I fight with the mindset that cancer will not win. It was hard and I had moments of negativity but I tried to contain them.

No

Shortness of breath, cough, fatigue, loss of appetite

Allogeneic stem cell transplant, 07/22/2017

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