Tuesday, September 20, 2011
Mondays are the new chemo days. At the meeting with Dr. Martins there was some bad news and some good news. And some weird, unresolved news.
Let's start with the bad news since it has to do with the YouTube video posted. It was a big hit my last year of law school. You should play it while reading this post. Anyway, Dr. Martins could hear, for the first time, with his stethoscope, the burbling in my lungs that I have been hearing at night when I lie down. It's in my lower left lung and probably due to secretions as a result of the tumors. Pleural effusions can only be seen radiographically so that will wait until the next CT scans in October. So I am certified as having my own "squeezebox." I also have several small, painful hard growths on my scalp that Dr. Martins thinks may be skin cancer. We will watch them to see if they grow larger. Just think, I too, can be like a mistranslated Moses!
The good news is that the small swelling on my back between my 6th and 7th (or was that 7th and 8th) mid line vertebrae does not appear to be malignant. At least it is softer to touch than most lung cancer tumors. And the swelling in my lymph node on my neck has decreased somewhat.
Now for the weird news. I've been in contact through http://www.cancergrace.org/ with a fellow who lives outside of Atlanta. He wrote me this summer asking about the MDX 1105 trial and I was enthusiastic in my response. He enrolled in it at Emory in Atlanta the end of July, and last week sent me an email asking how it was going for me. I replied, telling him I was off the trial, and he sent a sympathetic response. In it he told me that when he signed the consent form there was a provision for randomly receiving either 1mg per kg of body weight, 3 mg per kg of body weight, or 10mg per kg of body weight. You were not told what dosage you would be given when you signed the form. But when he went to received his first infusion, he was told that the clinical trial protocol had changed and all patients were being given 3 mg per kg of body weight. This was this past summer while I was still on the trial. And I was never informed that the protocol had changed. I was receiving 1mg per kg of body weight. I received this email this morning, right before my appointment with Dr. Martins, so you can believe it was the first topic I raised with him. Both he and the clinical trial manager had never heard of such a thing. They thought that perhaps the fellow at Emory was in the MDX 1106 trial but I've received 6 emails from him all with MDX 1105 in the title.
So, I took the little guys to Greenlake for a swim and a walk to deal with it.