Hi Eileen,

I think there are a number of reasons Barry is doing well. But having said that, it has certainly not been a walk in the park for him and he is dealing with a number of unpleasant side-effects as he finishes his 6th week today, very sore throat and soft palate with mucositis and thrush (mouth is still pretty good, however), phelgm at night, need for oxycodone to eat etc. It does seem as if the tomo-therapy machine produces less severe problems, and this is from the horse's mouth, the oncology nurses, doctors and nutritionists -- and carboplatin appears to be better tolerated than cisplatin, at least based on what I have read on this forum and again, from the nurses and doc's.

However Barry is also doing better than anyone else at Hopkins who is getting tomo and carbo (so say his RO's) . We think this is due to several things: 1) being in very good shape before treatment -- we had been hiking in Himalayas this spring and he was just back from trip to England where he spent a lot of time doing bird surveys with his brother in very steep terrain. He's been on this prostate-healthy diet for two years which means his cholesterol, weight, etc. etc, were excellent. In fact, Barry said he felt as fit as he ever had in his life when he was diagnosed. Plus he has a great "this is not going to defeat me" attitude and lots of support from family and friends. 2) Not having really debilitating surgery beforehand -- recall Michael had a neck dissection and a woman here at Hopkins who is getting the exact same treatment as Barry is really wiped already (only 1/2 way through) as she was so weakened by her neck dissection (not done at Hopkins, they wouldn't have done it first). Barry did have removal of his primary tumor (tonsil) but ENT wouldn't touch the base of tongue. It takes a long time to recover from surgery and sometimes your body is just not ready for the stress of chemoradiation. 3) Finally, Barry's been absolutely meticulous about his mouth and skin care, using various things which we had seen recommended (e/g/ the aloe in mouth, Therabite etc. ) and also, being very serious about continung to eat and drink. We see a lot of people who come out from their radiation treatment, pick up their things and go home. Not surprsigly, their skin is not in great shape. Or the ones who won't eat "because it tastes like nothing" -- Barry absorbed the warning that "food is medicine" well and his calorie intake has stayed stable, although he has gradually lost the weight he gained beforehand. He also heeded the warning from his ENT (the one who herself had HNC) to "keep swallowing" and he was determined to do this, which became a moot point when his peg fell out last week (!) and they didn't want to replace it. Also, he has continued to exercise, albeit modestly, and says his energy levels -- which fell intially -- have been stable for last three weeks.

Whether the fact Barry's never smoked and has no associated co-morbities also contributed, I am not sure but interestingly most of the people we see daily at radiation have also never smoked!

Anyway, he has 3 more treatments which will only hit tonsil bed and base of tongue (of course, just where he is most sore!) and then he has to heal. We were encouraged when we met a guy yesterday who had been 2 weeks' ahead of Barry on tomo/carbo and he said he is feeling much better, no more phelgm, mouth recovering a bit and he's starting to eat more things.

Will keep everyone posted ...

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!