Tuesday, July 2, 2013

Deja vu all over again...

So it's been more than 5 years since I last wrote here...and truthfully, I thought I'd never touch this again...that the disease was dead and I wasn't.

About 18 months ago, when it was time to switch over from semi-annual to annual labs, the first shoe fell. Doctor told me that there was a little something in my blood...probably nothing to worry about...but that we should continue the semi-annual visits. A few visits went by and no mention of this "phantom". Forward to mid-April when I'm told that I've relapsed. He wants me to come back in 2 months to check out the growth rate.

Mid-June rolls around and there are more amyloids in my blood. The good news is they're increasing slowly. We'll wait another 2 months and more lab work for now...but the fact-finding has begun for me.

I figured that, since I'd beaten it once, I can do it again. We talked about the options and, yes, another transplant is a possibility...they've still got more than enough of my stem cells frozen at Emory to do another. On the other hand, a second transplant typically lasts about half as long as the first.

I don't want to go through that again if it's only for another 2-3 years; there are options. The options aren't much better as they too involve chemo drugs. The up side is they'd be spread out over a period of time.

Emory is starting a clinical trial for relapsed amyloidosis soon. The doc mentioned it in April; in June, he told me I don't qualify. It seems I'm too healthy...another piece of good news (maybe).

So, for now I'm planning on getting my very arthritic shoulder repaired. Once the other fun begins, surgery would be a major infection risk that they probably would frown on.

Thanks for caring,
Jerry