Thread: GVHD
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Old Mon May 13, 2019, 11:27 PM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Shadowii,

In many ways, grade 1 acute GVHD is good news for the following 1) it is not something worse, 2) it is in the early stages 3) many doctors consider some GVHD to be a good thing due to its possible GVHD vs MDS effect, meaning that if your father's immune system is working hard, it is more difficult for MDS to come back, but this is a speculative benefit.

I have lived with grade 1-2 GVHD both acute and chronic for 5 years post-transplant. The key to it all is to always report all symptoms, no matter how small they seem to be so that action can be taken early. When GVHD gets to grades 3 and 4, it is considered to be more dangerous than beneficial, so controlling it early is the way to go.

For the most part, GVHD has been a nuisance, a need to go through more drugs and creams, and more frequent doctors visits. For skin GVHD, it is tightening skin, itchiness, some stiffness. For GVHD of the gut, it means trouble digesting food, more frequent and watery bowel movements, and some increased likelihood of infection. GVHD of the liver mostly shows up in blood tests, but is rarely felt until it is really late in the process.

I think that what you were looking for though is can you live with GVHD?Absolutely, and most symptoms are quite bearable. Always report, always take the meds.

Dan
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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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