Michael-

I agree with Gary -- you need to be prepared for the worse and hope for the best -- that's what Barry and I told all our doc's and nurses so we have already discussed options if plan A (or B, etc...) doesn't work. Every one of them, even our most "Ms. Sunshine" nurse, has said it is going to be very very tough. But they also have said, we are all (which includes Barry and me) going to work together to make sure you get through this...!

Barry is getting carboplatin instead of cisplatin for reasons noted earlier -- to not exacerbate his current high-end hearing loss nor contribute peripheral neuropathy to his already existing benign essential tremor (hereditary, his dad had it, does get worse with age). Also his renal function is fine but not that of a young man (he's 66). Carbo is better for all of these and also can be given in 1/2 hour; the down side is that (as a newer drug) there is a lot less data on long-term efficacy -- but what's available seems to indicate it has similar results as cisplatin as a radiosensitizer. Both work by forming platinoid bonds in cell's DNA, preventing replication. Both are potent myelosuppressors, thus anemia and platelet/white blood count depression are expected side effects and will be monitored before you get your chemo each time.

Barry plans to continue to do as much as he can while he can, continue moderate exercise and so forth. This helps with fatigue, as long as not over-done.

Barry's time in at the tomo-IMRT when there are no scans being done is only 20-25 minutes and that includes the set-up and take-down; the actual time the beam is on is about 10 minutes, watching the "Beam On" sign outside the door. They play music for him and the ceiling is a giant back-lit transparency of the galaxy.

His mask fit too tightly around his mouth when we did the walk-through; recall he had gained almost 17 pounds -- and it was pressing his lips badly against his teeth. Sort of a recipe for sores. The techs enlarged it a bit with RO's oversight and it was fine the next day ("perfect" said RO).

He is still having PEG issues and these are primarily stomach gas and burping etc. so glad to read that this is expected and should be temporary. It does contribute to his having that mild nauseous feeling, which is relieved more by Prevacid than an anti-emetic. We are going to ask nurse about this tomorrow in case she has a better suggestion.

Michael asks what to do for skin etc. Obviously nothing on before treatment (couldn't tell from M.'s post whether he was OK'd to put stuff on his head during the treatment) -- the second Barry gets out of the treatment he sips some cold water and holds in his mouth, then heads to bathroom and rinses mouth with cold 100% aloe vera gel, and swallows this. (Have to have the 100% stuff that is edible, get from GNC or similar. He uses about 15 ml. in mouth). He also smears some on his skin (or his Radiacare gel, which is mostly aloe). Then Biofine cream on skin, all radiated areas. It is too early for him to have broken skin or mouth sores; what he does at that stage will probably change.

We have a daily check list of stuff to do which includes various rinses and skin treatments, as well as the Thera-bite (7x a day) and fluoride. This works really well to remind him to do something. Having a routine helps.

Michael, keep drinking -- did your nurse give you a "target" amount of fluids per day? Barry's is 72 oz minimum. This and eating good foods as long as you can will really help. I know my mother had lots of problems eating during her chemo as nothing appealed, they told her "medicine is food" and to do what she could.

Good luck tomorrow --

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!