I hate dry mouth!

Amifostie - Eythol
Yes, I have and a few others on here....

I had the injections in my stomach every day about 15 miutes before the 35 daily rads. It's rough to an already rough situation...but to me, I thik it was worth it.

Most people develop some kind of side effects..some can be nasty.
Each injection left a welt in area about the size of a golf ball,not swollen, just red, dry and itchy. They would rotate aroud my belly button to keep from getting the same spot...each spot took several days to heal up.

Also with me, around the 31st injection I started to get extreme fever swings. They would go anywhere from 102.7 down to 96.7, very scary.

I had to stop the last few because of this...

But, for me the good news came several months after treatment...going from no taste or saliva, having to drink a sip of water with each bite of food. Every time I talked, always carrying a bottle of water with me.

I also never got the thick ropey phlegm that some get.

So in my case, I can only presume that the Amifostine helped me....

I'm early two years post treatment (Nine weeks of Cisplatin, Taxotere and 5FU,then seven weeks concurrent weekly Carboplatin) and 35 daily rads with Amifostine.

I have regained around 90 - 95% of both my saliva and taste....

Best,
John

KristynRuth86 said:

bummer
Reading this I'm devastated that no dr told me about this I have terrible dry mouth and had no idea this was even available

It probably wasn't an option
They removed Amifostene from most recommended treatment protocols within the last year because of the horrible side effects and the evidence just didn't show that there was any real benefits. Still; many swear by it. Have you tried accupuncture for your dry mouth? It works well for me.

Bob

adventurebob said:

It probably wasn't an option
They removed Amifostene from most recommended treatment protocols within the last year because of the horrible side effects and the evidence just didn't show that there was any real benefits. Still; many swear by it. Have you tried accupuncture for your dry mouth? It works well for me.

Bob

Same here...
I asked for Amifostene specifically, and they told me no. Said there was no statistical evidence showing that it did any good, and that it would make me sicker. So, I didn't get it either. Ten months out from treatment, and I can successfully chew Biotene gum. Still using a lot of water to eat and talk.

Deb

Deb

Skiffin16 said:

Amifostie - Eythol
Yes, I have and a few others on here....

I had the injections in my stomach every day about 15 miutes before the 35 daily rads. It's rough to an already rough situation...but to me, I thik it was worth it.

Most people develop some kind of side effects..some can be nasty.
Each injection left a welt in area about the size of a golf ball,not swollen, just red, dry and itchy. They would rotate aroud my belly button to keep from getting the same spot...each spot took several days to heal up.

Also with me, around the 31st injection I started to get extreme fever swings. They would go anywhere from 102.7 down to 96.7, very scary.

I had to stop the last few because of this...

But, for me the good news came several months after treatment...going from no taste or saliva, having to drink a sip of water with each bite of food. Every time I talked, always carrying a bottle of water with me.

I also never got the thick ropey phlegm that some get.

So in my case, I can only presume that the Amifostine helped me....

I'm early two years post treatment (Nine weeks of Cisplatin, Taxotere and 5FU,then seven weeks concurrent weekly Carboplatin) and 35 daily rads with Amifostine.

I have regained around 90 - 95% of both my saliva and taste....

Best,
John

Hi Brian

If you can get it during treatment do it, I did the Amifostie on my first rad treatment but not the second time because the doc did not believe in it. Ever thou I did not have it on my second rad treatment I am doing well and only use a little Stoppers4 at night to sleep.

All the best to you
Hondo

I Had It - Sorta
I talked to docs at two different treatment centers before beginning treatment. One group highly recommended the Amifostine (Ethyol), saying you could tell a big difference after treatment between those that got the injections, and those that didn't; the other group refused to consider using the drug, saying that not only was there insufficient evidence it helped, there was some concern that it may help the tumors, as well.

I ended up going with the pro-Amifostine group, and agreeing to the shots with the understanding that over half of patients are unable to have injections for the full 35 rad days. I must say the "lethal skin rash" I read about on the internet gave me pause, but I wanted saliva. Five folks in my group started at the same time; a little over a week later, I was the only one still getting the shots. Just over two weeks in, my doc pulled the plug on my injections - the reactions got too bad (I wanted to continue, but doc was concerned next stage would be anaphalactic shock). We started with injections to the backs of my arms (one arm one day, next arm next day). As the local reactions got worse, we moved to tummy injections (I was afraid they'd be more painful - they weren't). My blood pressure stayed good for the injections (this is a concern for some); I didn't get high, long lasting fevers (elevated temps sometimes); I only had nausea twice (both times I had gone "too long" without eating); it was the skin reactions (rash, whelps) that prompted my doc to discontinue injections - I was bummed.

A year after radiation, I would say I normally have mild dry mouth AND can normally feel saliva in my mouth. Taste is completely normal or nearly so (I don't know of any discrepancies). I have to drink a lot with certain foods - only a very few foods are just not worth trying to eat now (doughnuts, dry meat). I normally leave my house to go to the grocery WITH NO WATER BOTTLE. Chewing gum can usually keep me covered. I timed myself one day, and shopped with no water for nearly four hours (I don't shop all the time, but when I do, I do). I do not get up in the night because I'm parched, and a single drink when I first get up leaves me good to go on a 5 minute stroll with the dogs. When I spit - it leaves my body.

the back of my mouth/top of throat have become more "sensitive" in the last three months - doc said it was very dry, and I need to go back to the biotene swishes. Oh well. thought I was done with that - hopefully seasonal, I dunno.

Phew! There you have it - history of spit, according to Pam.

I haven't even heard of it?
I haven't even heard of it? What I would give to have normal saliva. Drives me insane and keeps me awake and grumpy. If I forget a water bottle I panic and start mapping places I have to go and what I need to do to get a drink. It's insane. Cancer is evil.