Great that there's some good news amidst the complications. I feel very hopeful for you.

Hellion,
Best wishes with getting things back in line! Praying for you. I appreciate and hope for your "Tumors Dead, Dead, Dead" more than physical looks right now! Something we can all agree on and want for you as well as one another.
Whatever it takes, but Never, EVER Give Up!

I've heard that the worse the rash the more effective so that's a good sign.. Hopefully everything will level out hugs!

Thank you for the informative update, Hellion. That's the fighting spirit! Regroup, and try again or with something else.

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

Keep up the good fight! Glad to hear there the bus is rolling again.

Thanks fornthe update, Hellion! Best wishes for some good tumor destruction.

Thanks for updating. You are one brave soul. Best of luck, Hellion.

Dear Hellion,

I hope that your doctor and you are on the right track in thinking that the increased CK levels are a good thing and that it means the tumor is being taken down quickly. I pray that your body may continue to handle this process, so this tumor can be disposed of it in the toilet, where it belongs!

I understand that you're looking for some smooth sailing, as I like to call it. You deserve it! In the wake of all is going on in your life, I hope that you are feeling reasonably well. I wish, I hope, and I pray that this will eradicate your cancer. Here's to smooth sailing and good health in your future! Keep up the fight and remember that we are here standing beside you and behind you every step of the way.

Love and hope in OCF,
Kerri

Dear Hellion, what a time you are having. Tumour Lysis sounds good. Glad to hear that your body is coping ok and hope that all this treatment is completed soon with a fantastic outcome.
Thinking of you,
Tammy