Frances,

Thanks for the info. I have added it to my list of things to discuss with the onc. Sure hope your cancer is totally gone. I wish you the best.

Bobbie,

I am so sorry to hear about Danny. I surely hope they are wrong. Heather's surgeon also said he wouldn't recommend operating. It would just be "heroic surgery", probably wouldn't work anyway and she would be terribly disfigured. I can't help but think about people like gnelson and Packer66, though. I know they are still having reconstructive surgeries and it has been terribly hard on them, but they are still alive and supposedly cancer-free. I think if chemo doesn't work, it might be worth a shot, with a different, more confident surgeon, though. Of course, it is ultimately Heather's decision.

Evereyone,

As far as clinical trials, I have changed my mind again. I just re-read an article I found in a magazine from last year. It states that about 75% of children with cancer in the US are in clinical trials and only about 5% of adults are. And the survival rate of the children has increased progressively with the increased number enrolled in trials. Sounds to me like it is worth considering.

We do have a consultation at Johns Hopkins on April 3rd. We also have an appt with the local onc on Monday because Heather's swelling has increased just over the last 24 hrs. It had been her cheek and jawline that was swollen. Now the swelling has expanded to include her eye and lip. If the onc thinks it is critical, we will start standard chemo Mon. Otherwise, we will go to Hopkins on Thurs and see what they recommend.

To all who have e-mailed me privately, Thank you! You are all so wonderful and caring. And Eileen, you and Brian may disagree frequently, and I do respect Brian, but I think you are an angel! smile

Wish us luck!
Rainbows & hugs, wink
Rosie

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.