Tuesday, December 20, 2011

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.

Saturday, December 03, 2011

Carfilzomib Bites the Dust

Visit with Rikin this week. I've built up anxiety about my need to discuss continuing the carfilzomib trial. The drug has been very hard on my muscles and bones. But Rifkin is three steps ahead of me. He's already concluded the drug is not working and has an abstract of another new drug he wants me to start on (bentamustin). My Doc from MDA who moved to NYC talked with us about that drug when we were in NYC in August. It's new in its application to myeloma, but has shown some success in treating lymphoma. Since giving it to me would be "off label" we have to get preapproval from my insurance company. Off label merely means it would be used for a purpose other than that approved by the FDA--treating myeloma rather than lymphoma.
The last month I've had to deal with a significant lesion in my upper left arm. The lesion is a result of the myeloma eating away at my bones. Cancer cells essentially replace bone, making the bones weak, to the point of fracture. That was the concern as they xrayed my arm, put me in a sling, and subjected me to 5 days of radiation to kill some of the myeloma and make way for bone growth. Getting on and off the steel table for the radiaion treatments was the most difficult part of this, given my messed up back. But, like all these treatments, I survived and am very glad that is over.
These are difficult times as we continue to search for some longer term relief and try to ignore my decline as well as the short list of new drugs that might be available.
Thank you everyone for your continued support.