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Amifostine - Eythol

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

I was looking for some other information and came across this on Amifostine...

Amifostine - Eythol

It still has me a little ticked from a comment that someone made awhile back that related to their MD as stating that Amifostine was outdated and ancient in the cancer treatment arena....

While almost three years (when I had Amifostine Injections) may be a long time technology wise, apparently it isn't that long for Amifostine...

Especially considering when myself, Dawn, Joe and a few others had it a few years ago. It was basically said to me that it might help with thick ropey phlegm (which I never had), that it could possibly help regain some salivary function (which I have nearly regained all of mine).

Now it may even help with kidney problems associated from Cisplatin.

"Amifostine is used to decrease the risk of kidney problems caused by treatment with a certain anti-cancer drug (cisplatin). It is also used to help prevent a certain side effect (dry mouth) caused by radiation treatment for head and neck cancer. Amifostine is thought to work by preventing certain chemicals from damaging healthy cells. It may also help repair cells damaged by cisplatin or radiation treatment."

Another;

"NEW ORLEANS, LA -- June 23, 2004 -- Data presented from a Phase 3 clinical trial involving 303 head and neck cancer patients showed that Ethyol? (amifostine) reduced the incidence of moderate-to-severe dry mouth (xerostomia) in patients receiving radiation therapy for their disease. The data also showed that two years after treatment, patients treated with Ethyol retained the ability to produce saliva."

How good is that....

Best,
John

KTeacher
Posts: 928
Joined: Jan 2011

I was able to take amifostine for 4 weeks last year during radiation treatment. After treatment appointment with surgeon thought it was not useful, helpful. One year later, I think by what is happening to me now that it definitely helped with saliva. I had a neck dissection July 22 lymphnodes and a salivary gland removed. I get more dry each day. Just started 3rd week of radiation, my body refused the amifostine this time, I was very sick the first week, radiologist decided no more shot.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

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.

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

where do you find those sweet? or do you get a script from the doc?

Linda

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

Now I know why I can P so well

Ops
Hondo

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Its my understanding that the suction machine is prescribed by the doctor and should be covered by insurance.

I think Steve (Hawk711) had a suction machine, maybe you can shoot him a PM for more info.

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

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

staceya's picture
staceya
Posts: 701
Joined: Jan 2010

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

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

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's picture
Pam M
Posts: 2194
Joined: Nov 2009

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.

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

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's picture
connieprice1
Posts: 299
Joined: Oct 2010

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

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

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

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

Homer, the second exerpt from above was from a site talking about a clinical trial back in 2003, here's the link to it;

Amifostine - Clinical Trial

John

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