Brain Radiation and Entering a Drug Trial

On our return from our lobbying effort in Washington DC last July, Yoko and I decided to forge ahead with our life together and try to do things we might not have the chance to do later on. We began making travel plans to Europe, something we might never get to do if my health deteriorates. We planned the trip of a lifetime -- three weeks in Italy for early October, 2008.

If I have a recurrence of cancer, it is more likely to show up as metastasis to the brain or bones. In the first phase of my treatment, we were dealing directly with the lung tumor to shrink it and kill any metabolic activity. That seemed to have worked. In the second phase of my treatment we were trying to deal with the cancer systemically -- that is, to kill any cancer cells that could be floating around in my body and showing up as metastatic cancer, say to the liver or kidney. The problem, however, is that chemo does not work so well in the brain. Lung cancer patients will frequently develop secondary brain tumors, despite having been treated with chemo. This tendency for chemo not to help with brain tumors is said to be the result of “the blood-brain barrier”. Given the size of my tumor at diagnosis, I felt I was at risk to develop brain tumors. I am more afraid of being disabled by brain tumors than of dying.

I spoke with Dr Steve as well as my radiology oncologist about the idea of doing whole brain radiation as a preventative. I also did research on the internet and called on online support groups to give me advice. The bottom line was that there is no research to suggest that it helps and there is no research to suggest that it does much long term harm. Nevertheless there are dangers to radiating the brain, such as seizure from brain swelling due to the radiation, potential memory loss, etc. The other risk is that, if down the road I did develop mets to the brain, whole brain radiation as a treatment would be off the table as the brain (or any organ for that matter) can only take so much radiation.

After a lot of handwringing I decided to go ahead with brain radiation. We determined to do 15 treatments -- roughly half the radiation I had in the lung. Given the lack of hard evidence either way, my thinking about this was simple. If I don't do it and I develop brain mets, I will have wished I had. If I develop brain mets anyway, what did I lose? I decided that I would rather go down fighting than regret not having done everything possible.

I also decided to enter into a clinical trial --a double blind study -- for a drug called Stimuvax. This is one of the only drug trials for lung cancer currently underway. If I got into the trial, I had a two-thirds chance of getting the actual drug, rather than a placebo. The problem was that I had to "qualify" for the trial, which required that I be a Stage III non-small cell lung cancer patient who is "stable" and begin the trial within 12 weeks of completing chemo. In order to enter the drug trial within 12 weeks of finishing chemo, I had to start the receiving the drug by the end of August. That meant I had to squeeze two weeks of brain radiation in the last two weeks of July. Our trip to Italy was planned for October.