I am about to start my radiation. I will have 40 treatments. I have had 4 chemo treatments and have 8 more to go. There has been questions whether or not to take this drug Ethyol for dry mouth before each rad. treatment. Can anyone tell me about their experience or info that they have gathered?

THanks Penny

Hi Penny,

You'll probably get some interesting responses on this one. Jack completed the entire series of Ethyol shots and did not get the terrible nausea that many, many others have experienced on this forum. That was due to a very aggressive, pro-active anti-nausea regime that included twice a day zofran, compazine for any breakthrough, and Emend on the days he was having cisplatin. Also you need to drink 3 quarts of water every day as hydration also helps. He thought the shots were painful when they were being given but that went away after a few minutes. I asked him if he would recommend doing it and he said yes as long as you know that results are not guaranteed. It's a chance at decreasing potential side effects but everyone reacts differently. Many people have reported they were not able to tolerate the nausea but that wasn't an issue for Jack.

It's too soon to tell about his salivary gland functioning but he did not get the thick ropey mucositis that is common with radiation so he thinks it did something for him. Also his taste came back completely within 3 months.

There's no right on wrong answer on this or any other treatment decision you will make. Look at the pros and cons and go with your gut. Best of luck.

Regards JoAnne

Use the "search" feature for "Ethyol" (or Amofostine) on "all open forums" and you will get tons of info. You can also do a search on the home page and will get many hits as well.

My husband thinks Ethyol is in part responsible for his getting through radiation with less severe mucositis* and far better salivary function than most. However it is not an easy drug to take -- protocol (hydration and serious anti-nausea drug 90 minutes beforehand, blood pressure readings, watch for generalized rash, etc.) should be followed exactly He did not take it on chemo days and that did not seem to diminish effectiveness but did make the Ethyol easier to tolerate.

*There have been a few recent papers showing some reduction in severity of mucositis with Ethyol but this is not as established as the salivary gland protection.

Gail

I just completed my 8th day of Amifostine (Ethyol) and I have to say I have had some nausea.
Right now I am also experiencing a terrible taste in my mouth that I just can't seem to get rid of. I was trying to avoid the compazine but my rad. onc. nurse told me TAKE IT! I also had acupuncture yesterday and no nausea today.

Compazine generally does NOT work for Ethyol nausea (you may be fortunate, but most need to take one of the expensive serotonin anti-nausea drugs such as Zofran or Anzemet). Take what you need to so that you can get through the treatment.

The terrible mouth taste may be due to the amifostine but it is also a common side effect of chemotherapy and also, the initial reaction of the mouth/tongue to radiation. Try swishing with a salt/baking soda mixture, sucking on a sugarless candy or chewing a xylitol-containing sugarless gum.

Acupuncture does work for nausea, as well -- at least for some people.

Gail

KristyN, I had a strong metallic taste in my mouth during the first part of rad, when I could still taste things, and found that honey lemon cough drops completely eliminated it.