I understand there is an injection I can take three times a week called Amifostine that will lessen the probrability I will lose my saliva glands as a result of the daily radiation treatments I am taking for the SCC cancer at the base of my tongue. Does anyone have any experience with this drug and does it work? I understand possible side effects are low blood pressure and nausia, but the doctors will monitor my blood pressure and give me Zofran for the nausia. Your comments are appreciated.
Terry

Terry,
My husband stubbornly stuck with the Amifostine 5 days a week for all 37 radiation treatments...even though it made him pretty sick (but he was also on chemo, so the combination may have made it worse).

Frankly, he is fairly disappointed at how little preservation of salivary function he has (at about 1 and 1/2 years out from treatment). ENT tells him more could still come back.

Anita

Terry,

I had an Amifostine shot everyday before my radiation treatment. They have a minimum timeframe after subcutaneous injection in order to get you into radiation, so I never had to wait long. I took Compazine as my antiemetic for 5 weeks with Zofran the last week and 1/2. I was only sick the 31st and 33nd day, but I believe it was due to the buildup of mucous overnight followed by some poor breakfast choices.

The other side effect is low blood pressure following the injection. That didn't occur with me either. They are to inject into fatty tissue, alternating sites in case of allergic reaction. We used four sites: the back of both arms and the front of my stomach above the belt line. It did hurt during injection, but less so if they patiently injected (slowly) the drug. After a couple of weeks the sites became a bit sore, and after five weeks started to itch for about five days. Benadryl had no effect, but I didn't feel the need to take anything more.


I was highly motivated to use the drug, especially once I heard it would help throughout the treatment and reduce the effects of radiation. Apparently they were right because I experienced little pain that an occasional Percocet (2 per day) couldn't fix through the first five weeks. Also, I was able to eat solid though increasingly watery/milky food throughout the treatments. Good Luck. Still too early to say how much saliva I have or will have.

Three days out of radiation I had a rapid increase in pain and swelling. The first thing my wife said was, "Too bad you weren't still on the Amifostine."

David

Hi Terry,

I also took Amifostine injections and only missed two of thirty treatments because of low blood pressure. The injections do smart some, but the good thing is it puts you on the clock in relation to the machine. There is only a small window of time in which the drug is effective so the folks running the machine have ensure you receive your radiation treatment within that time frame -- it sure minimized the waiting time.

I'm over eight months post-treatment now and while I'm not completely dry, I don't have as much syliva as I had hoped. The docs tell me it could take up to two years before I get all I'm going to get. Either way, I'm glad I did it as I wanted to be proactive and do everything possible to mitigate the side effects of treatment.

Best of luck...

-Brett

Terry,

I tried the Amifostine (Ethyol) and unfortunately now list it as a known allergy. I had a terrible reaction that started about the 2nd week with my fever spiking to about 104 within 30 minutes after injection. My entire body turned red, too. It was suspected that the Ethyol was the culprit and after being hospitalized, we stopped it and the symptoms disappeared.

Strangely, I was taking Salagen and even tried Evoxac to stimulate salive but there has been more saliva since I stopped both. If the wind is blowing and I am outside, I can not open my mouth or my tongue sticks to the roof of my mouth. Waking in the morning I have a pool of thick white goo that I just rinse out. Otherwise, I can eat about anything even without drinking water. I tend to drink a lot of water because it just feels better when I swallow.

I did vomit almost on cue 30 minutes after the Ethyol injection and no amount of medication helped. Since you don't know me or where I live, I will admit I smoked pot and the vomiting stopped immediately. My fear of the smoking causing a recurrence and paranoia of the police or my children finding out prompted me to stop and I stopped the Ethyol anyway.

Ed

I would recommend giving it a try. My husband had amifostine, back in the dark ages (four years ago but in the medical field that is a long time) when they gave via IV push. He did have some low blood pressure, nothing major though, and the nausea he was able to control with compazine and then Zofran toward the end. His mouth was pretty dry for awhile post treatment, but four years out he has a pretty good supply of saliva. For about 2 years after radiation he had to have a glass of water to eat anything and he was always holding a bottle wherever he went. This past visit to Dr (four year check up), the Dr was like, "Where is your water bottle?" He said, "don't need it!"
For him, it was worth it.

Hello Terry,

I had IMRT radiation and took nothing for saliva
function. My cancer was on the right tonsil. After 33 rad treatments I still have some salvia function. I have read alot of pro's and con's about the drugs that are supposed to help with saving saliva function. Best Wishes, Go Pack!!!

Danny Boy

Hi Terry,

I had a daily injection of amifostine for all 37 of my rad treatments. They alternated the injection site between the left and right upper back hip / butt area. They injected the first shot in my stomach above my belt line but since I had / have very little fat to spare in that area they switched to the upper hip / butt area. It smarted and hurt some but I never really experienced any more naseau than what I got from the chemo. I received my shot 30 minutes before each rad treatment so my rad docs were also on a tight schedule to get me in on time. I'm 10 months post Tx and my saliva production is pretty good although I do get dry mouth and require drinking a lot of water when I eat. For me, I would hate to see what my saliva (or lack thereof) would be had I not had the amifostine. As you can see everyone is different but if you can tolerate the drug then I'd say go for it. I had the attitude that I had nothing to lose and, hopefully, saliva to gain.

Good luck going forward with your treatments. We're here to listen and offer any support you need.

Hugs, Nancy

It made me sick. Doc's took me off of it after 4 days. I think it was an allergic reaction. I would go into uncontrollable sneezing fits & my blood pressure dropped some. Got worse each day. Good luck!

My Husband had 5 amifostine treatments but his nausea was so bad they had to stop..we could not even reach the car before he started.
It is worth trying ANYTHING that will help with saliva retention, the longer he can go the better his chances.
Good luck to you both in the months ahead.
Take Care
Marica
Caregiver to Husband SCC stage IV base of tongue . Chemo /radiation, no surgery. Finished treatment 7/03 doing great!

I had 42 radiation treatments with amofostine 20 mins. before each one via an IV.I also vomited before rad ,after rad,and throughout the rest of the day.Nothing they gave me really prevented it.I was also receiving cisplatin once a week.ALtho I didn't have much salivia[not counting that mucous stuff] at first,now 13 months out I am really pleased.I still carry my water bottle I almost never really dry out.So despite the vomit,nausea,and several in-hospital treatments for dehydration I'm very happy I endured.I'd recommend giving it a chance.

susanlaura1,

You win the "Perseverence Award!" I don't think they try to give it via IV anymore for just that reason. They must grew 'em tough up there in the Midwest. Glad to hear you're doing well.

David

Actually, I think the amofostine delivered via IV could be the best way to go. My husband had a PICC IV line "installed" and so didn't go through the painful injections that others have mentioned. It was a simple matter of hooking the drug up to the line. Only drawback was having to keep the line clean and flushed. (And, at one point, the line became infected and had to be replaced.)

Julie, I told my husband about the return of some saliva for your husband after 2 years and he was pretty excited. He had given up hope of dry mouth ever subsiding. Good to have that glimmer of hope, anyway.

Anita

hi terry- i had amifostine injections 4 out of 5 days for my 7 weeks of radiation.i had a little stomach fat;so the nurse/docs rotated clockwise around my stomach.the injections did sting a little and i took one anti-nausea compazine pill one hour before the injections.i did develop a very minor rash that i hardly noticed....if you can tolerate it i would by all means take the drug-if it means saving a little of your saliva function it will be well worth it...as for me,i finished my treatments 2 months ago so i am still pretty dried out;but with luck and a prayer within a few years i will have more...good luck to you!!!

Hi all,

I had amifostine 34 out 36 treatment days, I finished radiation July 30. I only had a small rash on the four sites they used for injections. It does burn because of the saline.
Surgery Georgetown 5/7/04

Mike

I did not have amifostine, nor did my doctor offer it. I had IMRT to the right tonsil and neck and I have saliva in my upper left gland, a little bit in my upper right and none in the lower glands. I am 6 mos post Tx and have good my mouth feels pretty good. The worst times are waking up its pretty dry and eating certain foods, potato chips, beef I need to rinse to get it down.

Thanks all for your comments regarding the Amifostine injections. I had my first injection this morning and so far no side effects. I did take one tablet of Zofran however one hour before the Amifostine injection, so it seems to have helped with the nausia potential. I will be getting three injections per week.
Terry