Amifostine - Eythol

amifostine
I am glad that they gave me the shots, i think especially in my case, that I am missing a major salivary gland, I do not even want to know how bad I would be now if I hadn't received those shots. I only missed the last few, maybe 3-4. I had a lot of mucous, but I don't think I had that thick ropey stuff either that everyone talks about. It was gross, and gaggy, don't get me wrong, bit I definitely did not need a suction machine.

Skiffin16 said:

Same Same
I also had a reaction on the last few, I think I managed abot 32 out of 35...started getting fevers.

But I can only think that it helped after hearing some stories on here.

Forgot to mention HONDO, I think he had the injections also.

JG

I think they worked
I am glad I got them. My doctor suggested it. He is the only 1 of 3 oncologists using it.
I think that is just wrong. Now the Doctor calls me if a patient wants to talk to me if they are undecided about using it. I come in and do my best.
Stacey

I Had It, Too
I was only able to get injections up until about the half way mark - then the reactions were bad enough that my doc refused to continue (although I still wanted them) - his concern was anaphalactic (sp?) shock.

Almost two years ago, after I was diagnosed, and while I was "interviewing" prospects from a local cancer center and a major university hospital, the doc from the "big city" said they would NOT use amifostine as part of the treatment plan - insufficient studies to recommend its use, and a suspicion that the drug may protect cancer cells during treatment were reasons given, along with concern about potentially deadly reactions. The local doc highly recommended amifostine, and felt life-threatening reactions to the drug are rare - (I mean, come on - antibiotics can produce life threatening reactions).

With half the injections I hoped to get, I seem to have been pretty lucky on the saliva front. A year and a half beyond rads, and I am able to produce saliva (reduced amounts, but it's there). I can go for quite a while without drinking water (the only time I timed it, I went for four hours of "gentle" shopping without drinking). Chewing gum helps me produce enough saliva to not need water for a while. I do NOT wake up in the night because I'm dried out (OK, I DO wake up twice a night, and after I visit the bathroom I am thirsty and I drink, but the thirst is not what wakes me). I can eat almost everything I could before treatment - I can even eat some things quickly - for dinner tonight, I had a hoagie sandwich - yep - on a hoagie bun.

Oh, and my kidney function was good throughout treatment (even though I was diabetic and on chemo drugs that are hard on kidneys) and function in still good.

If I knew then what I know now, I would DEMAND the amifostine. Oh - and it's my understanding that the kidney protection is the reason the amifostine was developed - but I think it was protection from chemical warfare agents, I think - the salivary function was a bonus discovery, I was told.

Skiffin16 said:

Same Same
I also had a reaction on the last few, I think I managed abot 32 out of 35...started getting fevers.

But I can only think that it helped after hearing some stories on here.

Forgot to mention HONDO, I think he had the injections also.

JG

Amifostine
John that is correct I was able to take all of my Amifostine treatments, I believe I had something like 30 or 32 shots right in the belly. I also took radiation treatment twice and still have a lot of my saliva glands working, I believe it is all because of the Amifostine.

Thanks
Hondo

Pam M said:

I Had It, Too
I was only able to get injections up until about the half way mark - then the reactions were bad enough that my doc refused to continue (although I still wanted them) - his concern was anaphalactic (sp?) shock.

Almost two years ago, after I was diagnosed, and while I was "interviewing" prospects from a local cancer center and a major university hospital, the doc from the "big city" said they would NOT use amifostine as part of the treatment plan - insufficient studies to recommend its use, and a suspicion that the drug may protect cancer cells during treatment were reasons given, along with concern about potentially deadly reactions. The local doc highly recommended amifostine, and felt life-threatening reactions to the drug are rare - (I mean, come on - antibiotics can produce life threatening reactions).

With half the injections I hoped to get, I seem to have been pretty lucky on the saliva front. A year and a half beyond rads, and I am able to produce saliva (reduced amounts, but it's there). I can go for quite a while without drinking water (the only time I timed it, I went for four hours of "gentle" shopping without drinking). Chewing gum helps me produce enough saliva to not need water for a while. I do NOT wake up in the night because I'm dried out (OK, I DO wake up twice a night, and after I visit the bathroom I am thirsty and I drink, but the thirst is not what wakes me). I can eat almost everything I could before treatment - I can even eat some things quickly - for dinner tonight, I had a hoagie sandwich - yep - on a hoagie bun.

Oh, and my kidney function was good throughout treatment (even though I was diabetic and on chemo drugs that are hard on kidneys) and function in still good.

If I knew then what I know now, I would DEMAND the amifostine. Oh - and it's my understanding that the kidney protection is the reason the amifostine was developed - but I think it was protection from chemical warfare agents, I think - the salivary function was a bonus discovery, I was told.

Well.......hindsight and all that........
but I sure do wish at least one of the 5 doctors in my team would have mentioned the use of Amifostine as an option during my treatment. Heck, they threw everything but the kitchen sink at me, why would the fear of having this drug be any different then the hundereds of others that was given to me ?? At least I wish I had been given the option, because now I'm getting pretty fed up with this dry mouth stuff. Stoppers 4 is helping somewhat.

Larry

connieprice1 said:

It's the same here, no one
It's the same here, no one even mentioned amifostine to Connie. You would think that they would have had a clinical trial on such a serious issue. I am sometimes amazed that treatments this important are left up to the doctor instead of the patient. Homer

Hi Homer
That is because some doctors believe it works and some don’t. I hate when they make the discussion for us without even giving us the information about stuff like this. My second doctor told me he don’t believe in it because it don’t work, I had to tell him he was wrong, they don’t like to be told that very much.

But I have to be me
Hondo