Kathy, first let me say, I pray you do not have MDS afterall... will keep you in my prayers...
Birgitta,
Please correct me if I'm wrong. I also asked Ron's doctor at our last appointment. I wanted to know, when they check Ron's bone marrow, would it show he had MDS if he were in remission? The doctors said, Ron's BMB would reflect if he was in remisssion. He didn't quite understand my question.. or maybe he did. I then asked him, if I had a BMB could he tell me I had MDS or not? He said, yes, he could tell if I had MDS... of course, knowing I've never been dx nor had any symptons. He said, I would show normal marrow. And then, in comparison, I asked, what would my "Normal" marrow look like, as compared to Ron's "Remission" marrow? He said, it would look the same, but, if Ron discontinued Vidaza, that, it was not "IF" MDS would return, it was "When" it would return... because, it would, and it would be possible Ron's body could build a resistance to Vidaza if he stopped and played the "Wait & See"...
This is why we were "Crushed"... on one hand, we were thankful that Ron's responding to Vidaza, but, on the other hand, we were disappointed that we would not be able to "See" God's Miraculous Cure of "No MDS" without taking that "Chance" of stopping treatment. We decided to continue praying and to continue treatment...
So, my whole point is....
Kathy, while I pray it was all a mistake, and you actually do not have MDS, I also fear, if your second opinion Doctor didn't "See" evidence of MDS, then, could it be possible that you're in "Remission"? Did he discuss this at all ??? (You were being treated with Vidaza). I would think the doctor would want to obtain your previously obtained BMB slides to confirm. I would not want you to build up resistance to Vidaza by stopping... but, of course, if it was a mis-dx, then, you shouldn't be on chemo... Argh! Frustrating I'm sure... "Bitter-Sweet" actually.
PS. I just realized, I still owe you that little book I promised... will drop in mail by this weekend. My apoligies for the delay
|