At one year post treatment, my husband is pretty disappointed with the results of the Amifostine. It made radiation quite a bit harder to get through as he became quite sick from it - and now he doesn't see how he could have much LESS saliva. He was very stubborn with the Amifostine - refusing to skip any doses of it, even when the radiation nurses were almost begging him to. However, doctors tell him that one year is too soon to tell - that he could still regain some salivary function.

But everybody is different and I understand others have had good results with the Amifostine.

Anita

Hi, My husband had Tonsil cancer and 3 positive nodes, neck dissection first then 35 rad treatments with 3 chemo treatments concurrent. He tried the amifostine the first time and it made him so sick that was the end of that, even with the drugs to help him not feel sick. His Dr said he was dealing with enough to have to be sick from the amifostine too. His blood count did not get any lower with the chemo, so no infections etc, they didn't seem to think it would happen anyways. We were told by his chemo Doc and radiation dr that this was the way they prefer to do it, chemo helps the rad treatments. Plus my husband was going to go at this with all ammunition they gave him. He just had his 2 year 8 month check up and he is doing great. (knock on wood)!!
Good Luck Sherrie

I had all of my chemo treatments BEFORE I ever started the raditation. In my case the understanding was to prevent distant mets. The fact that it shrank my tumors was an added bonus and a good predictor of the effectiveness of the raditation.

I had amifostine as part of my treatment plan. It was administired via two subcutaneous injections within a short period of time just before the radiation treatment. If I hadn't asked for it, they never would have mentioned it to me. Why? I'm not so sure, but I think the jury is still out regarding the overall efficacy of it. In my case, I only missed 2 out of 30 injections as a result of low blood pressure. Every day prior to each injection they would question me about how much water I had consumed and whether I had taken my anti-nausea medication. Then they would take my blood pressure. If it was too low, no amifostine.

It's too early to tell how effective the amifostine was. I'm not 100% dry, but I don't have as much syliva as before treatment and I usually keep a bottle of water handy. In going out to eat, I always make sure my drink is full prior to eating and I will stop eating if I'm empty and waiting on a refill.

Am I glad I took the injections? Yes, in that I wanted every tool available to help mitigate the side effects of the radition treatment. The injections hurt -- felt like a charley-horse in each arm. And there was always some nausea, but I'm pretty sure it was "white coat syndrom" because I was always nauseated before the injections. One of the good things about taking the injections was it put me on the clock with regard to the radiation machine. They only had a short time window in which to treat me, which kept the waiting in line to a minimum. Even if the stuff doesn't work, at least I took my best shot.

-Brett

I tried the amifostine (Ethyol) and about four weeks into it I got violently ill about one hour after the radiation and my fever would spike to 104 in about 15 minutes. I ended up in the hospital and they tried to give me the Ethyol in a more controlled environment and determined I had somehow developed some type of allergic reaction to it. I went through about every anti-naseau drug know to man and still would vomit exactly one hour after radiation. I am probably in trouble for this but a friend gave me some pot and said try this when you feel naseaus and it kept me from vomitting instantly. I still got the fever, though and ultimately stopped the injections (and the pot). My fear with the pot was that I was a chronic pothead for 25-30 years and feared this brought on the cancer. I tried Marinol (pot pills) but it didn't help, just made me sleep more.

I smoked pot when I had hepatitus and it was the only thing that worked - probably saved my life.
Ironically, I also feel it was the pot that could have caused my cancer. Talk about "risk/benefit"!

Well, they have the active chemical in pot in pill form now don`t they ? I have a friend who`s only help was pot when she was undergoing treatment for Hodgkin`s disease........being a child of the 60`s I`m well aware of the benefits and risks of pot. hate to admit it, but I smoked it for 20 yrs. After living through the past five years with oral cancer, I sure know what it can do..........I check my mouth, with fear. .Dee

Well I was a child of the 60's and never smoked pot and it's a bit late to start now...Did I miss anything GOOD.. But don't now make give up my red wine.. This keeps the fear at bay...
Helen

Whew! There was a knock on the door after my post and it made my heart beat a little faster. I'm glad to hear I wasn't the only one. And yes, Dee, the pill form is called Marinol and it somewhat helps the appetite and takes the edge off but the true pleasant feeling of the real thing is gone. I can't tell if it helped with naseau either.
Ed

My husband tolerated the amifostine (Ethyol) very well...it was administered subcutaneously 15 minutes before radiation. He was to drink 16-32 ounces of water and take his anti-nausea medication 1 1/2 to 2 hours before the shot.

He has plenty of saliva and we feel (doctor, too) that it helped with some of the side affects of the radiation therapy. He just finished 8 weeks....maxed out.

Medicare will not pay for it unless you are post-op. It's about 760$ per shot.

$760...sorry about that.