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Last post:
Nov 30, 2009 11:37 AM by
Tex
I'm not a medical researcher, at all. However, I've had GVH for nearly five years. I was on immune suppressants for over two years and then went off. Right after I went off of them, I moved and changed doctors. I thought my GVH was still active but there wasn't really anything the docs here were willing to do to dx it. I mean, that would have required a liver biopsy and they weren't keen on doing something that invasive.
However, when I went to the Hutch for my five year follow up last August, the docs there decided I had to have GVH (no liver biopsy) and discovered that the two years without treatment had done some significant, not dangerous, damage to my liver and. possibly, my eyes.
That's all to say, I've had ongoing GVH for nearly five years now. Two of those years it was untreated.
FWIW, my onc back in OKC told me GVH doesn't burn itself out so much as, in time, it will usually just kind of give up. Not sure what the difference is but as I used the same term as you did ("burn out"), and she made the statement, I guess she understands the difference. 
Anyway, I don't think there's any hard and fast rule as to when GVH gives up, burns out or simply becomes to wimpy to make a dent in our bodies. At this point, I'm just hoping it goes away some day, some year.
Blessings
Thanks once again for some invaluable insight here. It's not always easy even with the best doctors around to get information that (I for one) can understand, and I've worked within cancer research for 13 years! (Little cog in the big wheel so to say, but I loved my job and it's great to see several drugs involved in clinical studies after years of blood, sweat, tears and laughter). From what I've been able to understand in connection with the GVHD is that it's one of those things that affect pretty much everybody differently and they haven't spent a great deal of resources in research (even though I hear that that's improving these days). It never effected my liver, but it has my kidneys.
As i mentioned I'm going through a bout of the rotten thing at the moment and I notice that my feet swell, especially if i'm wearing socks with any kind of elastic. This always freaks me out i've got to admit, as I remember every bout of blood poising starting with bloated feet (it's still the first thing I check every morning
I'm truley amazed at the amount of relevant material on this site and can see why my sister was hooked, I've found that the best doctors are the ones that will listen to your self diagnosis, even if it's wrong, as it gives them a more compressive view of what is actually going on. I guess a lot of you are the same, that you become very in sync with your body and actually listen to it and you know instinctively if something isn't as it should be??
My personal motto: Every new day is a good day.
L soldol
I've always paid attention to my body. I think I've had one or two docs who thought I was a hypochondriac. I never claimed to be sick, though. I just pointed out what was going on. I, too, have noticed that doctors seem to be improving in the way they take this stuff seriously...or I'm around better doctors...or after all the dx'd problems I've had, they figure I can't help but notice what's been going on with my body.
You know, you're within your rights to expect the docs to break things down until you understand them. Most of us think we don't want to bother them and take their time. And it can get to a point where I realize I ain't gonna win this round and I'm keeping them from the next patient. But I also remember that I'm paying their wages and they can damned well try to help me understand what they do. This leads to a lot of "Well, we really don' t know" replies. I'm fine if they don't know. It's when they try to snow me I dig in.
I can't remember if we've discussed if you're on steroids. That can lead to edema. Most of us have swollen feet, especially if we get on Prednisone. If it gets too bad, discuss compression stockings. They really helped me and felt great when my ankles were like little canteens of water.
Blessings