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AA Aplastic anemia

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  #1  
Old Fri Feb 27, 2015, 10:55 PM
LuGor LuGor is offline
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Location: Wichita, KS
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GVHD?

Hello. I'm new in here. I was diagnosed with AA in 2011, also had a BMT in 2011. I've been doing GREAT ever since the transplant. I had a sibling match as close as possible without being a twin. Very lucky. I just wanted to know if anyone has had GVHD. I know all the things we read to look for, but I wanted to know if there was anyone who had actually experienced it first hand?? Thank you for the help. Lucy
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Old Sat Feb 28, 2015, 05:31 AM
DanL DanL is offline
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lucy,

congratulations on the good transplant with minimal problems. if you look up gvhd in the search function, there are many stories about gvhd for aa and mds with each case being a little different. i have been working through gvhd for several months. although i have been fairly fortunate that it has been mostly grade one or two. we have other members in the forum who have had much stronger gvhd.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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Old Sat Feb 28, 2015, 12:21 PM
LuGor LuGor is offline
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Thank you. I think my problem is that I have suddenly had a skin rash start on my chest, back and arms. I've seen my family physician, but wondered if I should be going to my oncologist about it? Kinda freaking me out at the moment. I won't have blood work results until Monday or Tuesday. :-\
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Old Sat Feb 28, 2015, 12:49 PM
Bhutt Bhutt is offline
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I had gvhd of the skin mouth and eyes just getting over the second bout. I would get the rash checked by someone that knows what they are looking at.
A rash can be a sign that it is gvhd of the skin that's how mine started both times.

Blair
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  #5  
Old Sat Feb 28, 2015, 01:08 PM
bailie bailie is offline
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I had GVHD of the skin, but it was hardly noticeable. It started on back, then chest, then arms and legs. Each location lasted about four or five days. It was cleared up in about two weeks using Triamcinolone 0.1% cream and hasn't returned. Catch it early.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #6  
Old Sat Feb 28, 2015, 01:27 PM
DanL DanL is offline
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i definitely agree with Blair here. get it checked out by somebody who knows gvhd well and get control of it early if it is a gvhd flare up.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #7  
Old Sat Feb 28, 2015, 04:23 PM
LuGor LuGor is offline
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Thank you all so much. I will definitely call on Monday. I think I just needed reassurance that i wasn't overreacting.
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  #8  
Old Sun Mar 1, 2015, 07:41 AM
Fana Fana is offline
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My son has GVHD on his lips the skin on his lips keeps drying up then peels-off he had canker sore as as well all after his prednisone tapering. He was given hydrocortisone 1% which didn't help him much now he is on budesonide 12mg.
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Fana,mother of asad age 8 diagnosed SAA 2014, trying to decide between ATG or BMT..decided on BMT and finally did it
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  #9  
Old Sun Mar 1, 2015, 02:35 PM
rar rar is offline
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I had GVHD grade 4 along with CMV and C.Diff. The GVHD caused skin problems and rash. It also destroyed my gut lining. This caused a 2 month hospital stay during which I could not eat and barely able to move. The GVHD is under control and I am feeling much better. My oncologist says that GVHD can not be cured. They can control it. He also said that mild GVHD is good to have as it fights off cancer cells. Under your circumstances I would see an oncologist.
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