Holy shit, what a busy week. Monday was kidney doctor. Tuesday chemo. Weds was second kidney doctor at Cedars. Thursday was Berenson & Phan. Friday was chemo and Phan. The end result of all these appointments? My kidneys are worse than ever...I'm inches from dialysis. Everything still works, so I'm fighting the dialysis. The problem is that the kidneys are a result of the myeloma. So what this means, is that my treatment isn't working. The myeloma is getting worse. I don't feel any worse or different, even worked this week.
But I'm 0 for 3 on treatment. We finished up cycle 1 of the latest regimen...thalidomide, which is supposed to be super powerful. I've handled it pretty well. It tires me out at night, but otherwise no side effects. No success though, so thalidomide is already out the window. Yesterday we started a new more powerful regimen which include Treanda (never heard of it) and Revlamid. Wrapped up my treatment of Treanda at 3 yesterday and basically slept from the moment I got home until now. Phan says we are basically throwing everything possible at the myeloma. Lots of guess work at this point. Something better work and soon. This is no joke!! Also going to work on seeing another myeloma specialist to see if we're missing anything in terms of treatment or results. Berenson is good, but don't want to miss out on anything.
Phan is going to do a bone marrow biopsy in 2 weeks, this will answer some questions as well. It's all scary and frustrating, to say the least.
A few years ago, my nephew Dillon and I decided to climb Mt Whitney in one day. Early in the day, we were laughing at these other people with all their equipment, who were saying how hard climbing the mountain was. We figured it would be a piece of cake for us. By the time the sun was setting that day, we weren't off the mountain yet and realized that it is a difficult task, and that we are pretty stupid. At one point my leg was stuck in between a patch of snow and a rock, and I thought to myself that I'd be spending the night on the mountain. But we made it up and back in one day.....and as time has gone by we are still dumb enough to say we'd do it again.
I think I approached my myeloma treatment the same way. I figured early on, that I can do it, no problem. I had no reason to listen to folks who said how hard it would be. Well, I was wrong. This shit is a lot of work and a real long process. But we'll keep fighting.
The National Coalition for Cancer Survivorship has a webinar tomorrow (Tuesday Sept. 25) on how to get more involved in cancer policy in you...
I take 2000 iu of vitamin d per day. It's pretty important for keeping the bones strong. Here's an article and interview from Cure M...
Gary Peterson is a fellow myleoma patient. He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It...