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Hi Meri,
I hope that I am not hijacking your thread. You might find GVHD discussion entertaining and I hope you don't need the info.
Dan,
I will start at the beginning. Feb 2014 I was told that I had MDS so mild I would never need treatment. Apr 2014 a BMB showed MDS RAEB 2, very high risk. I was told I needed a SCT ASAP. All my living siblings were tested. My three brothers matched each other but not me. My three sisters matched me. I had a SCT July 2014. All went well, I regained my strength and endurance. Oct 2014 I went to ER with a fever. I had CMV, C.Diff and GVHD of the gut stage 3/4. I spent 2 months in the hospital. They told my wife I would probably die, they didn't tell me so I didn't. I didn't eat or drink the whole time in the hospital and didn't eat anything after leaving the hospital for the next two months. I recovered. Jul 2015 I was told that I was well en-graphed and the GVHD was gone and I should stop all my drugs. A week later I was covered head to toe in a bright red rash along with typical GVHD symptoms. I was given increasing large doses of prednisone. They stopped at 120 mg. I got somewhat better but the cGVHD persists to this day.
My doctor told me he could kill me with a relapse or with GVHD and there is a fine line between them and he didn't know where that line is and we had to find it with trail and error. Being an oncologist he prefers me to have some GVHD because of graft versus tumor effect. We might disagree on the degree of GVHD that is desirable. He says I will be on tac and pred lifetime. I hope that is a long time.
The problems I am still having is blood pressure with systolic ranging from 65 to 210. My cardiologist says he is not worried. I have a good heart and will die from something else. The change in BP caused me to almost faint and generally feel crummy. More recently the dizziness has becoming a feeling of being drugged along with the eyes not wanting to focus and fatigue and tiredness and half asleep. It is worse from about ten in the morning to mid afternoon or sometimes to bed time. Early morning I feel fine. A few times the vision got to the point all I could see was white fog that pretty much blinded me. It went away in an hour or so. This dizziness is probably my worst problem because there is not much I can do when it happens. Skin cancer is tolerable. I see the dermatologist quarterly. He will find 30 to 50 spots that need freezing per visit. He also found 4 cancers that needed surgery. For the eyes I tried restisis and xiidra. With both of them the cure is worse than the disease. I usually use eye lubrication. When they hurt bad I use muro, a 5% salt solution. From age 23 to 73 I had about 5 cavities. In the last three years I had a dozen. They were large, below the gum line, between teeth, and difficult to fill. I was lucky to find an old dentist who could fill them. All the young ones who I consulted wanted to pull them.
Those are the worse conditions, not too bad overall. the dizziness is the worst. In addition I have dry mouth, sore throat, big purple spots on the arms, a failed adrenal gland, and bleeding on the arms and legs whenever I look cross-eyed at anything sharp.
I wish to thank you for your thoughtful reply. I know I am lucky to be alive and things could be much worse than they are. After 3.5 years it is starting to wear on me.
Ray
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