I visited with Dr. A yesterday. I'll visit with Dr. B today.
Dr. A wants me to go on a drug called Revlimid. It's an analog of Thalmid (Thalidomide). Revlimid supposedly doesn't have the neurological side effects of Thalmid. Neuropathy and loss of mental acuity aren't supposed to happen with Revlimid. I forgot to ask if his maintenance plan includes steroids. Yuck/yippee.
I find myself wondering why Dr. B hasn't suggested Revlimid as our next step. Heck, I wonder why I had to bring up pamidronate infusions before they resumed. Have we moved off his radar screen or were we merely waiting for the restage?
Anyway, with the new info about the lack of allo donors, and the general sense that we're not part of the SCCA fast-track, Ed and I are going to ask whether we should transfer my cancer care to Dr. A. That way, I can get everything done at one place and under the supervision of one doctor. I might have too many cooks in the kitchen.
If the SCCA finds a suitable donor for the allo then we can make a decision and get back on the SCCA wagon if needed.
Oh, you probably wanna know something about my numbers: The cancer isn't gone. We'll get more info from the restage today when we visit with Dr. B, but the numbers I got from Dr. A weren't as I'd hoped. In fact, it looks like I'm back to where I was before the transplant. Confirmation comes this afternoon. I'll let you know.
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This blog is written by and about a guy with an incurable form of cancer. My purpose here isn't to say "woe is me", but to give insight about my thoughts, perspectives, and experiences throughout this adventure. My name is Andre. My partner's name is Ed. I intend to publish on a pretty regular basis here, but Ed might occasionally pop in with his thoughts too.
1 comment:
I can't imagine having two sets of doctors to deal with - it's confusing enough with one! Good luck!
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