Yeah, you didn't know that was possible, didja?
Ok, you know I didn't think this chemo thing was going to work, right? My logic is as follows - the best they have to offer is Revlimid w/ld dex. They want to knock the number down and have it stay down long enough to do an auto stem cell transplant. So in October of '08 I was 5850 and we began Rev/ld dex. After 2 cycles I was knocked down to 3310. But then, when I was off for just two extra weeks it climbed back up to 4164. While the next two cycles knocked it back down, it never when that low again and it demonstrated that it wouldn't stay down.
Their answer (the medical team) was too add a 3rd drug. This drug would be more harsh than Rev/dex alone and it had a lower chance of success.
So I wasn't holding my breath, as explained here.
The first cycle this time got off to a less than awesome start. The Revlimid wasn't ready, so it was only half a try with the Velcade.
My number on June 1st had climbed back up to 5060. We started Velcade/dex on August 9th. There was some mistake on the tests and they tested my IgG. that is the most common multiple myeloma. So one would expect my IgG to be low - because my
IgA is overwhelming it. And it was. Very low, like my red and white blood cell count and my platelet count. So I have no other starting point except for the 5060.
When I came home to start the 2nd cycle on September 7th, they tested again. I was not expecting anything great - less effective drug; just one cycle, blah, blah.
So I called them with a few questions. First off - I know I can't drink during the 14 drug days....what about the 14 drug free ones? No, no drinking period. Ok, next, since last Saturday my hands have felt like I have a bad sunburn. I get that, I know it's the neuropathy. However, I went to sit by the pool and the sun actually stung. Am I supposed to stay out of the sun with these drugs? No, just put on sunblock and if it hurts....stop it, lol! What was the IgA number?
Just Velcade and low dose dexamethasone.
"Hello? Still there?" By the way, I had some of the cookies from your last visit. they were great, thanks!"
All the breath came out of my body in this stunned shaky laugh.
Now, this is not to say, I am all set. Knocking it down is only half of what we want. We need it to drop and STAY.
So I've been thinking a lot.....while I lounge....lol. There are several decisions I have made in the last few months that were completely colored by my belief that this had no chance.
Looking at it now with this new piece of info...........I wouldn't chance a thing. I am not ever going back to the way things were. I like my reordered priorities.
4 years ago