I was just diagnosed and start radiation only IMRT treatment tomorrow (T3n0m0 Soft Palet). I have not seen much on this board about Ethyol. I have read conflicting reports but my Dr. says it will help.

Is it worth it?

Hi Kelly,
I had XRT and was told I would lose alot of my salivary function, so I opted to have the daily ethyol. My treatment was 7 years ago and it was administered as a daily push (I think they inject it now). It has the potential to make you really sick, however the nausea I experienced was later in treatment and was probably a culmination of radiation and chemo, not the ethyol. My salivary function is probably at around 80%. I usually always carry a water bottle around with me, but can swallow most moist foods without water. Forget crackers though! Without water, it would take a month of sundays to swallow! For the most part, it is managaeable so, in my case, ethyol was worth it. Good luck to you. And where in Michigan are you from?

Kelley

Thanks Kelley,
Had my first treatment today. I had no reaction to the Ethyol, but that may change.

Kelly

Kelley,

Just noticed you are from Grosse Pointe. I grew up there in the farms. I now live in South Haven on the west side of the state

I had the Ethyol treatment and about half way developed a fast reaction with 30 minutes with a fever up to 104, red rash all over. Many seem to have the reaction about midway through treatment or not at all.

Uptown,

Thanks for the info.

I do get an itchy spot on my abdomen after shots there, but have no problems with the shots on the arms and legs yet.

Dr. says they will be hitting all the salivary glands on the right side hard with the location of the tumor so I may loose those. he said I will be getting minimal doses to the left side so I should retain a good deal of functionality on one side.

How is your salivary function now?

Kelly

Kelly -- If you do a search (upper right corner of each forum page) for Ethyol or for amifostine (not amiofostine, as you have it in the thread title), you'll get eight pages of results for each. Some people appear to have had difficulty tolerating it; others have been more fortunate.

I have an oral surgeon that has been working on my teeth for a couple of years and he says "thick and ropey" whatever that means. I think I have a built in water meter that forces me to keep hydrated .

I still cough and gag when I try to eat some things but you eventually learn how to get ready as you learn what foods work well with or without liquid chasers.