So,

Been a little while since I updated. After a tumor lysis syndrome scare in the first week of the study, my research doc and study coordinator worked hard with the manufacturer to keep me on the drug at a reduced dose. He is confident that the drug is working well and that the lowered dose should keep me out of danger. Interestingly, aside from (apparently) terrifyingly high CK values, I never exhibited either the lab work or the symptoms otherwise associated with tumor lysis syndrome (i.e. cardiac stress, renal failure, etc.). We laughed when they said that this had only been seen in dogs and monkeys � it somehow doesn�t surprise me that I am, yet again, a problem child.

So, last Friday we prepare to begin again � as soon as labs come back with the expected CK values (they were dropping all week as expected) we can take the experimental drug, wait our hour, do our EKG and get the Erbitux going. Well, my blood Hemolyzes. Two hours wasted, but ok, let�s go again. And again. Nearly eight hours later feeling frustrated, confused and still worried that something else will go horribly wrong, they get the results and I�m started again.

We have no idea if it�s doing anything, but the doc is fairly confident that the elevated CK levels indicate the drugs are working well � it is a mystery that I never really exhibited full on tumor lysis syndrome, only that one value, but he�s happy and confident and I am too. I know he spent a long week worrying I might drop dead on him and thus create a messy paper trail for the drug company and the university, but I was never worried � I felt way too normal for me to think there was a real problem. For my part, tumor cells dying �too fast� seems like a good problem as long as my body can handle processing the toxins which, touch wood, it appears it can. I hope we get a scan in about a month to confirm my hopes that this thing is working well and that we have partial response or at least stabilized response.

Another meeting with the doc today, another dose of Erbitux assuming everything has remained within the tolerances and another week to feel these tumors melting away. For those following and wishing me well, I thank you and I will update again soon. I would like a quiet couple of weeks without any drama � sooner or later, something should just go right I should think. I don't even feel like that's asking for all that much but, as too many of us know, fighting this disease is rarely easy.

The Hellion