Hello everyone, my name is JoAnne and I am the caregiver for my husband who was diagnosed with stage IV cancer of the tonsil in late January.

He is part of a clinical trial evaluating the less invasive DaVinci robotic technique as an alternative to traditional radical head and neck surgery. Clean margins were achieved during that surgery on 2/3/06. The advantage of this new surgical technique is the ability to access the cancer through the mouth resulting in less blood loss and better visualization/organ sparing. The disadvantage is that the neck dissection is a separate surgery, and a level V dissection was done on 2/20/06. Jack had 7 positive lymph nodes out of the 80 removed but clean margins there as well. He had several CTs that did not show distant metastasis.

He started 7 weeks of daily radiation on 3/27/06 combined with 4 cycles of cisplatin planned every 3 weeks if he tolerates it. He is also getting ethyol injections.

So far he's managed the chemo okay - we are using zofran twice a day, emend for 3 days during chemo weeks with evening hydration through his port during that time. Nausea but no vomiting after the first round of chemo and the radiation pain is kicking in now on week 3. He has just started using percocet and lidocain solution. He finds the ethyol injection painful but no nausea or low blood pressure.

He has a peg tube and is using it - it became active for 4 weeks after his first surgery so we both got used to it. I believe this was the best decision we've made so far as he is comfortable using it now that his mouth/throat are too sore to swallow, and so far he hasn't lost a significant amount of weight. He is able to still swallow liquids and if that goes down I'll do hydration again.

He developed trismus following the neck dissection and he is using the therabite. This is obviously not improved with the radiation and I am nagging him to keep the strecthing exercises going - does anyone have any other suggestions?

I guess miserable but managable is his assessment so far but we have 3 more cycles of cisplatin and 23 radiation treatments to go. We know it will get worse before it gets better and that's daunting.

This is a great site and I appreciate Brian taking the time to talk to me. It's been an overwhelming time for both of us. Jack did not drink or smoke so he doesn't fit the risk profile. Personally, I don't care why or how he got this cancer anymore - we still have to deal with it. We spent our 25th wedding anniversary having surgery and he started radiation treatments on his 55th birthday. I have already found an email buddy here and for the first time since the diagnosis I feel I am with people who have been there and are in the same boat we are.

Most days we're hopeful - and on the other days I read some of your postings. I do not believe that hope and fear are mutually exclusive - seems like we have both and we need to find the balance that works for us. When I really figure that one out I'll post it.

I have been surprised to see that there are many different opinions on treatment options so I am trying to get as much information as possible to make good choices. We are fortunate to have more than one CCC within commuting distance to us, and our MO likes to consult on the best approach. It's obvious that we all second guess ourselves at some point and that's also comforting. I was beginning to think it was me.

Not thrilled to be here but happy there is this resource to know we're not alone in this battle.

Regards JoAnne