I've had some difficulties posting on the blog but believe I've finally solved the problem so here's the update. As noted earlier the carfilzomib made me pretty sick and just when I had prepared myself to talk with Rifkin about withdrawing from the trial he told me it wasn't working and we had to switch. Fortunately there was another drug on the shelf--bendamustin, which I started 2 weeks ago. I get 2 infusions every 3 weeks, along with dexamethasone and revlimid for 21 days straight. These drugs push my red cells, white cells and platelets down in the nether regions. That in turn necessitates trips to the hospital for transfusions, at least on a weekly basis. I typically am at the clinic/hospital 5 to 7 days a week. Quite the life. Of course, since I can't drive due to my messed up arm, Susan has to drive me to all appts., and sit and wait as I get treatment. I think her role in all of this is worse.

My left arm is healing, albeit very slowly. I can touch my left finger to my nose! Reminds me of which, as kids, we used to try to touch our noses with our tongues. I couldn't do that either.

I wish I could paint a different picture, but we're dealing with some very difficult issues. It seems there aren't any treatments left. It's all complicated by my nonfunctioning bone marrow. From my perspective it is extremely frustrating as I would do anything to keep going. So we let the bendamustin treatment shine a ray of light and keep us moving forward.

Peace, light and love to all.
Dan