Hi Marty --

My husband Barry also went through treatment at Johns Hopkins for stage III/IV SCC of the right tonsil, base of tongue and two lymph nodes, this was completed end of September 2005. He was also a non-smoker and was positive for HPV (lots on the OCF web site and also, the forum about this).

Barry is entering the HPV vaccine trial next week, officially -- starting with the phoresis and skin test on Monday.

Feeling down and depressed after treatment is common -- many experience a let-down when they are no longer actively fighting the disease, and of course there is the obvious depressed mood due to the life-changes (and realization of mortality) associated with such a serious illness.

Having said that, your husband was treated at one of the best CCC's in the country and we have found the doctors and nurses there very caring and concerned, so do no be reluctant to raise any issues with your treatment team. Be sure that your husband gets his swallowing/ speech evaluation (this is standard at Hopkins but usually 5-6 weeks after end of treatment to allow things to heal) and that he is religious about doing any swallowing exercises the therapists prscribes. Barry found that these resulted in a rapid improvement in his swallowing -- he had weakened and damaged muscles even though he never used his PEG and ate all the way through (though he lost weight.)

I will send you a private message, your husband may wish to speak to mine and get some encouragment. The month after the end of treatment can be especially rough, the radiation is still working, the mucositis hasn't healed yet, hard to eat etc. However Barry found that things improved quickly therafter and by the first weekend in December he was able to attend (and eat) at one of our club's Christmas party). He had a fused PET/CT scan in December which showed no problems, and another one in March. Lots of physical exams as well. Everything looks good and we are essentially back to a normal life, travelling (Mexico and Australia) etc. He eats nrmally now and has good salivary function (he took amifostine, nasty stuff but it worked)

Tell your husband that it is a long road and a hard road, but it is not an endless one.

Best wishes,
Gail