Many of you have asked about Ethyol and in my travels I found this link which you may find interesting:

http://www.fda.gov/medwatch/SAFETY/2006/Mar%20PIs/Ethyol_PI.pdf

Hi there, I was just reading about this Ethyol. Have you tried this? My dad just had 2/3 of his tounge, lower jaw, and neck nodes removed. He had another surgery five days after to remove 1cm around base of tounge where his tumor was. Now he is home after two weeks in the hospital and will soon start radiation. He had a feeding tube put in. Can this Ethyol be put into his tube? Is this only for chemo? Sorry we are still new to the game.Thanks

Ethyol is something given by injection. It's not something that gets put through a tube.

It is not only for chemo--it can prevent xerostomia (drymouth) whether or not you are having chemo. Depending on what your Dad's radiation plan is, he may be at more or less risk of lasting drymouth. Ethyol is hard to take (it made me vomit almost every single time) and isn't anywhere near 100% efective at preventing drymouth (I still have a very dry mouth) so there are some plusses and some minuses.

Nelie

Hi thanks for the info. Did you get the dry mouth from the surgery or the meds or both or the radiation? Have you stopped the Ethynol? I hope you are feeling better soon.

Hi Karen. My husband's doctors did not advise the Ethyol, but we wanted to try it anyway, as initially, I was very scared and worried about the "quality of life" effects my husband would face from radiation. He tried it, lasted only one day, as it made him extremely ill. He could not face another day of it, so we decided it wouldn't be worth it. After all is said and done, I am glad he didn't try to keep taking it and put himself through even more misery, because although he has a very dry mouth, it is very manageable, he doesn't have to constantly be drinking something. This is even with him having had conventional radiation, which is supposed to be worse than IMRT as far as affecting saliva glands. I don't want to talk you out of having your dad consider Ethyol, because there are some who can tolerate it, but as Nelie points out, it isn't totally effective even if you can tolerate it.
Best of luck to your dad.
Michele

Karen,
Just another perspective for you...
My husband had Ethyol each day of radiation - 37 total. Yes, the Ethyol added to the nausea (especially on the days the chemo was kicking in) - but he is glad that he stuck with it. His doctors tell him that he has more moisture in his mouth than many of their patients.

He had a PICC line for his chemo delivery, so the Ethyol was delivered via that line. Things may have changed since then - this was 3 years and 4 months and 3 weeks ago (but who's counting).

Anyway, best to you as you make your way through all of this. I know that it can be confusing at times - but this is really a wonderful place to get some stories of first-hand experience.

Anita

Karen (and dad),

I had Ethyol injections for about half of my radiation before I developed a severe reaction to it that required hospitalization for a couple of days to get things under control. I believe I benefitted from it but I still have dry mouth, especially when outdoors.

Ed

I personally did not have it or need it. I had IMRT and only lost the parotid that was in the immediate radiation field. All of my other salivary glands made a complete recovery and my salivary function is as close to normal as I remember it. It did take a good 18 months. I still drink a lot of water however.

Ethyol, as Ed mentioned, can has serious side effects in many people. Only a relative few here have been able to tolerate the full course. If you are having XRT, then it may be your only shot. I have not heard that chemo causes permanent zerostomia. Radiation is the usual culprit. It is administered by injection only.