Dear Gita,

I am so sorry to read about the further complications your sister is having. I know you all must be reeling from all the things you've been told so far. I started to not post a reply to your message, but I recall just a few months ago being in your shoes and needing flat-out honesty. I hope things go differently for your sister than they did for my husband, who had a similar prognosis.

One month after he had major surgery to remove cancer from his hard palate, tonsil, and right neck, he had a recurrence metastatic to the skin on his neck/face. Doctors then said they could do no more to stop such agressive cancer. Long story short, we found that in all probability, no clinical trial would consider us knowing the cancer was metastatic to the skin. Our only options, according to our doctors, were to wait it out (they gave him two months to live) or take Iressa or Xeloda in the hopes that it might arrest the cancer to a small degree (10-20%, they said) and buy us some time. I'm not sure if we did get any extra time, but it made my husband feel better to KNOW he was doing something to fight the cancer with one last shot rather than just wait to die. He lived 7 weeks--he ended up dying from feeding tube/healing complications rather than from a ruptured carotid artery, which is how everyone really thought he would go. He did not have, to our knowledge, any distant mets. He was at home with me and my two daughters, and we were thankful the end was peaceful for him compared to what could have happened.

I'm so sorry to deliver this bad news about my husband's situation. I wanted you to know that although our first instinct was to hop a plane and go find a miracle, we finally had to listen to what the doctors told us: stay home spend time together as a family rather than be separated from loved ones by being half way across the states. (Scott opted to take Xeloda, a pill he could take at home, rather than travel to a cancer center for an IV concoction.)

Apparently "metastatic to the skin" is one aspect of this nasty cancer that can't be treated once chemo and radiation options have been exhausted. Maybe there are others on here who can elaborate, but this was my understanding and experience with this prognosis.

Whatever your sister chooses to do, I wish her peace and to be surrounded by love.

Christine

Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.