Christine,

I am so sorry. It tore me up to read your post. I don't have much to offer, but I will list a couple things for your consideration. A combination of Irinotecan and Docetaxol seemed to slow the growth of Heather's tumors. Although, to be honest, it seemed to work better on the spinal tumor than the ones in her head and neck. Might be worth considering, though.

I would suggest you pursue the clinical trial idea. Check with another doctor, call Johns Hopkins, MD Anderson, Memorial Sloan-Kettering......or ask your doctor to call. There are links on OCF for websites that list the clinical trials, so you can see what's available right now.

You can also call the drug companies directly, but I didn't have much luck when I tried that. I think the doctors are better able to get through to the right people. If Scott doesn't qualify for any of the trials, sometimes the companies will make the drugs available on a "compassionate need basis". That's not the term they use, though. I can't remember exactly what they call it, but it's when they agree to provide the drug to people who have exhausted all other options.

As a last resort, I suggest that Scott consider taking turmeric/curcumin. Again, there is a link here at OCF to a study that was done at MD Anderson. This is obviously a long shot, but there is a possibility (albeit small) that it might slow the tumor growth.

I know you probably don't want to hear this, but you do need to discuss end-of-life and quality-of-life issues with Scott. If you don't, I'm afraid you will regret it later.

It's funny the things that come to mind when faced with life threatening situations. You mentioned Scott's laugh. Heather had a laugh like that. Just hearing her laugh made me want to laugh too. It was such a bubbly, happy laugh.

I wish I had something more concrete to offer. I'll keep my fingers crossed for that miracle.

Rainbows & hugs,
Rosie