My mom is undergoing Radiation and they have been giving her Ethyolshots to try to help save her saliva glands. Anyone out there take this? It is making her nauseated and sometimes she has to vomit. We are also concerned about the other side effects of the drug. Has anyone out there used ut and found it to be helpful?
Karen
Karen,
My husband had Ethyol every day of his radiation. Yes, it usually made him sick - at least for the couple hours following. But I think he is glad that he stuck with it - the doctors tell him he has a little more saliva than their patients that didn't stick with the ethyol. Every little bit helps.
Good luck to your mom. This is a tough treatment, but she can make it.
Anita
Guys,
Is this Ehtyol the same as amifostine?
Karen, welcome, if it is , it can be very toxic to some folks. My hubby only managed 5 infusions before having to quit due to intractable nausea.
He also says he wishes he had persevered with it if there was any chance it may have saved any of his salivary glands.
Anti-nausea medication can be given either just before or with the amifostine infusion.
Hang with us a while Karen there is lots of information on here for you.
Take Care
Marica
Yes, its the same as amifostine. I had shots through most of my treatment although I missed four days in a row when I had just had my seocnd chemo (couldn't deal with the nausea from the chemo and amifostine too), and then the last two weeks I switched to once every other day ebcause they made me very sick (until the amifostine totally wore off about 3 hours after) and I vomited almost every single time despite taking all sorts of anti-nausea meds. BI'm glad I did the shots as much as I could because every bit of saliva helps right now.
My view for a lomg time was that vomiting once a day was a harsh proce to pay for keeping some saliva for the rest of my life but I was willing to pay it, although there were those four days in a row when I reached a spot where I wasn't--then they talked me back into doing it every other day.
There is some research that suggests it helps with mucositits too and I will say the last couple of weeks I did notice that my mucositis didn't seem to be quite so painful in the days when I did the amifostine (though I also got a steriod as an anti-nausea drug on those days and that may have been the effect of the steroid, not the amifostine).
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
"our RO says in his experience almost no one continues beyond 15 -16 treatments."
Hey, thanks for that tidbit, Gail. I did 23 shots before stopping (for the second chemo) for a few days so now I feel better about that. My RO said I was much more persistent about it than most but, again, I wasn't sure if he was just trying to cheer me up. No one told me about the hydration thing but by the second week of rad they were giving me extra hydration every morning anyway thourhg the port so it probably worked out OK. Are there some kind of bad long term effects that can happen if you don't hydrate enough?
Counted wrong. I did 19 shots before stopping for the second chemo and I did 24 shots altogether (out of 33 days of rad)
Hi Nelie --
The hydration is to prevent a severe drop in blood pressure, one of the side effects of amiphostine. The dr's should have told you this, it is clearly indicated on both the Ethyol sheet that comes with the medication and in the booklet and the brochure on administering it. The drug has some nasty side-effects and shouldn't be given lightly. Mabe they felt the hydration they were giving you was enough.
Barry has now had 16 shots and will continue them as long as he can -- if he has to, he'll drop one a week (probably Fridays) or even two. He had a good lunch afterwards - 16 oz. Minestrone soup + saltines -- but feels a bit queasy now. Looking at the clock, the Anzamet from yesterday has just worn off....
Gail
i took ethyol shots everyday during treatment for all 28 treatments. i took zofran an hour prior. never really had any nausea that i could directly relate to that.
i'm 3 weeks out of treatment and so far I have an over-abundance of thick saliva, sometimes mixed with mucous. I hope that it did preserve some of my salivary function. So for no dry-mouth issues after 3 weeks, but the constant spitting is quite irritating.
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!)