I made it about halfway through radiation with Ethyol. I puked almost on cue thiry minutes after the shot and the last week my fever spiked with a rash, too, about 1 hour after the shot so I stopped.

Since most of you don't know me or where I live I found a good hit of the whacky weed stopped the nausea instantly. I do not recommend this for those who carry a badge and a gun, those who are somewhat paranoid to begin with or those that are currently anticipating a change in employment in the next couple of days.

BTW, it may help you eat more, too.

Mr. X

Ed, you crack me up. Glad to hear that you are doing well and keeping up the awesome sense of humor.
Minnie

Would that be something for the adjunctive treatment options forum??? Or would that be something for the friends forum? Lots and lots of friends!

Hi Ed --

That reminds me of Barry's ENT surgeon's experience. Recall she had HNC about 18 years ago, received cobalt radiation at Hopkins, they didn't have gastric tubes then, it was swallow or starve. She was 19 at the time. She told us she used to gargle with 2% lidocaine and still cried every time she had to eat. A friend recommended pot as a pain reliever. She used it and said she was "stoned out her mind" for three days (must have been some good s--t). No pain at all. However she recalls her mom driving her back down I-95 (from Baltimore) to their home in DC suburbs, and her screaming at the top of her lungs, "SLOW DOWN!! Everything's going TOO FAST!!" and her mother calmly replying, "I"m already driving 45 in a 65-mph zone, how much slower do you want...?"

Anyway when we saw her just before Barry started treatment she half-jokingly suggested he try pot if he had a lot of pain -- unfortunately being out of grad school for some years now I'm not exactly sure how to score any weed now Actually, he is in last 2 days of treatment and his throat is pretty darn sore so he also recalled our surgeon's advice...wonder if it would work better than the oxycodone which is OK for the pain but causes him major constipation and some gastric reflux.

Gail

Hi Ed --

That reminds me of Barry's ENT surgeon's experience. Recall she had HNC about 18 years ago, received cobalt radiation at Hopkins, they didn't have gastric tubes then, it was swallow or starve. She was 19 at the time. She told us she used to gargle with 2% lidocaine and still cried every time she had to eat. A friend recommended pot as a pain reliever. She used it and said she was "stoned out her mind" for three days (must have been some good s--t). No pain at all. However she recalls her mom driving her back down I-95 (from Baltimore) to their home in DC suburbs, and her screaming at the top of her lungs, "SLOW DOWN!! Everything's going TOO FAST!!" and her mother calmly replying, "I"m already driving 45 in a 65-mph zone, how much slower do you want...?"

Anyway when we saw her just before Barry started treatment she half-jokingly suggested he try pot if he had a lot of pain -- unfortunately being out of grad school for some years now I'm not exactly sure how to score any weed now Actually, he is in last 2 days of treatment and his throat is pretty darn sore so he also recalled our surgeon's advice...wonder if it would work better than the oxycodone which is OK for the pain but causes him major constipation and some gastric reflux.

Gail

On a serious note--someone recomnemnded this to me ebcause I was having so much difficulty with mausea from both amifostine and chemo--but the idea of *smoking* something at that point, with all the data of the effects of smoking on tongue cancer in general, really put me off it --and I was beyond the point whre I could have eaten it in a brownie (plus I wouldn't know where to score anymore either Gail )

Barry's through with Ethyol now -- he took his last shot Thursday and it made him sick (his post-chemo day), so it is over. Three more treatments -- yes, it should have been TWO more treatment but the tomo machine shut down half-way through his scan Friday and though they worked on it for hours, we all finally threw in the towel and went home. I joked and said they needed to use more duct tape, and the technician said -- don't laugh...!

However the end is in sight, and hopefully the Ethyol has helped -- he does have pretty good saliva still though definitely thicker and more "bubbly." The Ethyol was *by far* the most difficult part of a difficult treatment for Barry, mainly because of the need to swig those 24 oz. of water in 90 minutes, which got very hard as his throat became more sore and he seemed to have more nausea driving up to Baltimore. We finally twigged that it was motion-sickness (anyone who drives the streets there knows what I mean) and probably brought on by his using more oxycodone as the days went on (nausea is one of its side-effects). Anyway, he did 22 treatments which is about a record at Hopkins.

Ethyol is probably worth trying but according to RO at Hopkins (who is expert on amiphostine) is adds about 10% to parotid preservation -- the radiation plan itself and whether one gets tomo, IMRT or conventional beam has more impact. It also costs about $1000 a pop so insurance may be an issue as well.

Gail

Its interesting because my insurance has been really awful about funding the tube-food, though I think we have FINALLY gotten that straightened out but they didnt balk at paying for the amifostine and the prescritpion drug coverage only balkde once and in kind of a minor way about the cost of the zofran (thye tried to tell me they would fuind 10 pills every month--which was ridiculous--I was only going to need them for one month at that point but I needed more than 10!)