Hi Janine --

My husband Barry was diagnosed last year (June 21) with Stage IV tonsillar and base-of-tongue cancer, with spread to two lymph nodes. It was also like a nightmare, we were about to go on a long trip and Barry was (in his words) in great shape (he thought). He was treated at Johns Hopkins, his only surgery was a radical tonsillectomy to remove the primary, and then 7x chemotherapy treatments (carboplatin) concurrent with 33x radiation treatments, he also was given amifostine (Ethyol) to preserve salivary function. Thanks to the newest anti-nausea drugs like Anzemet, the chemo was (in his words) a "non-event" but the amifostine was very difficult to take. However it worked, he now has about 70-75% salivary function and this is continuing to improve as well.

He was given a PEG tube but never used it, he was cautioned by our ENT surgeon (herself a HNC survivor) to "try and swallow as much and as long as you can" -- and this proved good advice, again thanks to proactive and expert pain management he was able to eat throughout through he did lose weight (mostly right at end after a couple of infections). However he would have used the PEG if needed as "food is medicine" and it is vital to not neglect nutrition and hydration. Be sure to speak to a nutritionist at your hospital if you need advice on any issues.

Although your husband should be ready to use the PEG if needed as hydration and nutrition are critical to his well-being -- try to encourage him to at least swallow something to keep the muscles etc. working as best they can. Be sure, also, that he gets examined by a swallowing/speech therapist after treatment in case (as will probably be true) he will need some therapy in the form of exercises to restore function. Even though my husband ate throughout, he still had radiation-induced muscle weakness and damage, which resolved gradually after months of religiously doing his various exercises. He also used a TheraBite device throughout, to avoid trismus (restriced jaw opening). Ask your nurses about this -- or some other means of avoiding this common problem. The OCF web site has some good information on this.

The good news, your husband can get through this and come out the other end in good shape, although recovery will take time (patience and optimism needed!). My husband completed treatment Sept. 29, by early December he was able to go to a Christmas banquet and eat (and enjoy) his grilled salmon, in January we went to Mexico where he discovered that spicy foods were still a no-no (ouch!). We are just back from Australia, where he ate everything I did and especially enjoyed their meat pies. Barry never lost all his taste, because his radiation plan did not affect his outer oral tongue (and its taste buds) but it was greatly diminished and some things tasted weird (or were tasteless). Taste gradually returned and now about a year later he can eat (and taste) almost everything, and although he still avoids really spicy foods, this also continues to improve. The one thing is he has some "Sauce Bearnaise Syndrome" -- where one associates a certain food with bouts of nausea or other negative events -- and thus some foods he ate a lot of during treatment (such as cream soups) physically turn him off now. He never wants to see any more cream of broccoli, for example!

Of course the bottom line is that all Barry's tests and scans have shown a complete clinical response to the treatment, although of course the doctors will continue to monitor him. His was a human papilloma virus -16 cancer (he never smoked) and these seem to be more sensitive to treatment. So we are pretty much going on with our lives as before, and not looking over our shoulders all the time. Barry does need to regain some of the weight he lost, maybe now just 5 pounds or so, this also is a gradual thing.

The major advice is that you will have to really focus on learning all you can -- never be afraid to ask questions, and to keep asking until you get answers -- and at the same time provice emotional and physical support for your husband PLUS do everything else you normally do. This can be very stressful and exhausting, and if you can get help from friends and family, accept it! Your hospital may also have a social support person who can assist with issues such as prescriptions, transport etc. And come to this forum whenever you have a question or just need some moral support! We have been there...

Gail