First of all, Diane, I'm sorry I sort of took over your post. I didn't mean for people to start focusing on my problems more than yours. Sorry. Now, the important stuff - you need to talk to each and every one of your husband's doctors and INSIST that they keep you in the loop. You need to know what is going on with your husband's treatment. You need to question what you don't understand. Push for answers and don't back down. For his sake and yours, you need to ask, ask and ask some more. Don't ever doubt your importance in this fight.

Bobbie,

I am so sorry about your husband. I really don't know what to say except that I hope they are wrong. As to your question about the pockets of fluid - Heather developed a walnut sized sac under her chin a couple weeks ago. It was filled with fluid. There was a small amount of pus, but most of it was clear. They treated it as an anaerobic infection, but the culture came back negative. Before it was cleared up, she developed another sac on the side of her neck. Her mucous also got worse and changed from clear to yellowish green and her throat felt like it was closing up. It turns out that the fluid is probably from part of the tumor being necrotic. Also, her severe trismus and severe pain are being attributed to this tumor. I wonder why they couldn't put 2 and 2 together and figure this out earlier. She never did get better after the RAD was done, but we were told not to worry. Everything was fine. Some people take longer to heal, etc., etc., etc. Looking back, it was basically a bunch of crap. That's why I say question everything. If something just doesn't seem right, ask and push and DEMAND an answer!

Brian,

I would very much appreciate any input you may have. I am especially interested in any clinical trials or new treatments that you feel have shown promise for recurrent cancer. For instance, any thoughts on photodynamic therapy? I just read a recent report that sounds promising. Heather's biopsy shows an oropharyngeal tumor. I don't have all the details yet, but it looks like it was probably growing while she was still having RAD. Maybe it was there all along and was just missed. Maybe the RAD made it grow faster. I don't know. What I do know is that the "gold standard" of surgery and radiation has failed. She now will need some type of chemo. It really sucks because she was willing to have chemo with her RAD, but was discouraged from doing so. Now chemo may be her only hope. The surgeon will do more testing, but, at this point, he feels surgery is not a viable option. Her chances are very slim, but we're not going down without a fight. And if chemo fails, we will turn to nutritional therapy or some other non-traditional therapy.


Everyone else,

I appreciate all the well wishes and support, but what I really need right now is information. Anyone that has a success story with alternative therapies. Any good web sites or organizations that go beyond the traditional surgery/RAD/chemo. Any little tidbit about anything you've heard or read that sounds good. I'll take any shred of hope anyone has to offer right now. I'll feed her carrot juice until she's orange if it will help (don't laugh, my Mom has a neighbor who is doing that for breast cancer and while it may not effect a cure, it does seem to be helping!) Anyway, you get the point. Flood me with information!

Rainbows & hugs to you all,
Rosie