Hi --

My husband is getting amiphostine (ethyol) every day during treatment except on chemo days. He's had 15 shots (actually, two shots, 250 mg each, given 30 minutes before his radiation). He missed one day due to an apparent local reaction (red area around shot from day before) but that turned out to be a one-time event. However a LOT of people cannot tolerate the drug due to nausea, persistent queasiness, low BP, chills, rash etc. Barry takes a Zofran 90 minutes before the shot, and also, drinks 24 oz. (at least) of water starting 90 minutes before. We have a booklet on administering Ethyol from Medimmune that Barry's daughter got for him (she used to work there) and it emphasizes the need for hydration and also, for some people, oral anti-histamines like Benedryl. Hopkins doesn't like to use these (dries the mouth) so we put a cortisone cream on the places he gets the shots immediately afterwards. He keeps drinking aftewards to help work the stuff out of his system -- which takes several hours.

On days Barry gets it he does feel slightly queasy in the afternoon --- he tries to eat something after the radiation so he doesn't have an empty stomach -- like soup and saltines. He finds that Fridays are the worst -- not only is he tired, he's post-chemo but the 24-hour Anzemet he gets with the chemo has worn off and he is more subject to nausea.

We met with dental oncologist yesterday who is very senior guy and he is quite keen on amiphostine -- says Barry's current good mouth moisture and limited low-grade mucositis is due to this and to the tomo-IMRT -- he also feels ethyol helps some for mucositis, which Nelie's post above mentions. He did say that if Barry continued to have problems on Fridays to drop it that day, and that some folks end up taking it every other day with satisfactory results.

However a woman at Hopkins tried to take it yesterday for first time and we saw her today and she said she simply couldn't tolerate it -- was sick all afternoon and night, despite good anti-emetics. She is getting cisplatin (has recurrent HNC) and this may be a contributing factor as the cis also made her sick for a few days afterwards.

So it is worth trying but not everyone can do it. Apparently Barry is approaching the record as our RO says in his experience almost no one continues beyond 15 -16 treatments. So far so good. Barry says the hardest thing is drinking all that water in a relatively short time, which alone could make anyone a bit queasy!

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!