That's just not a good thing because I'm getting sicker and my donor pool is still miniscule. The docs have been watching my antibody levels for several weeks. This last Tuesday, at their team meeting, they decided it was time to stop "watching" and start something new.
Dr. Palmer (another of the team) and Dr. Zaas came up a new game plan...a new drug...Bortezomib. Aren't these just great names? I wonder why they never make a drug that people can pronounce...maybe it won't be as effective! ;-)
The short story on Bortezomib is that it's a pretty new drug. It's in a family of its own.
It is a cancer drug that fights multiple myeloma (MUL-tih-pul MY-eh-LOH-muh) -- "A type of cancer that begins in plasma cells (white blood cells that produce antibodies)" and mantle cell lymphoma (MAN-tul sel lim-FOH-muh) -- "An aggressive (fast-growing) type of B-cell non-Hodgkin lymphoma."
The docs like this drug for a couple of reasons. It fights the cells that create my antibodies and it concentrates on B-cells which are the big problems for me.
The iffy part about taking this is that it hasn't ever been used on a lung transplant patient. Now that might make some of us step back and say "Wait Just a Sec" but what the heck...there's a first time for everything!
There are several side effects but the ones that Dr. Palmer wanted to discuss with me are:
- Peripheral neuropathy: decreased sensation and numbness and tingling of the hands and feet.
- Nausea and vomiting
- Bone marrow inhibited
Inhibited bone marrow can become a very big deal because I could end up with a low platelet count, low red blood cells, and low white blood cells. That pretty much translates to my body becoming a neon sign to attract any infection passing by. I wouldn't have any resistance. Doctor Palmer said that if my platelets got too low they might hold off on another dose until the bone marrow could produce some more or they could give me a transfusion. OK this is starting to become a bigger deal to me too!
In case you're wondering why anyone would use this drug here's the answer:
We have to do something to enlarge my donor pool. Right now they have looked at potential lungs but none of them are ever OK with my antibodies. I'm getting sicker and I will continue to get sicker. If we choose not to try this then I would just wait and pray for a "perfect match" to my antibodies. While I do pray for that, I believe I need to be proactive in my treatment.
Dr. Palmer is concerned that if I choose the wait and watch approach I may not live long enough to find a donor match. Now that's enough to get my attention ;-)
I have complete faith in my doctors. They are educated and caring. Between them, there is a LOT of experience sitting around that table every Tuesday. They proposed this drug to me because it is basically the only known way that I might be able to reduce my antibodies. I need to do everything I can to get rid of those things!
The major obstacle to this undertaking could be the insurance company. The approval request to give me the drug has been submitted. The insurance company didn't outright refuse to pay for it - they want some more information to explain why they want to give this drug to a lung transplant patient. The fact that they didn't deny payment is a really good sign to me! Let's all pray that they will cover the cost of the drug!
Anyway that is it in a nut shell. I need to get rid of the junk in my blood so that I won't reject donor lungs!
I'll keep you posted when I hear from the insurance company and when I hear more from the docs.
Take care and Happy Valentine's Day to everyone,
Love,
Lee, Wendy and Missy
