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AMIFOSTINE

tuffenuff's picture
tuffenuff
Posts: 277
Joined: May 2012

Did you have it and if so, how effective do you feel it was and how were the side effects?

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

I was prescribed it mainly for controlling the thick phlegm and mucusous, plus some future salivary retention.

I believe it worked out for me...three years out and I have 95% saliva and 100% taste.

Side effects were itchy welts at the injection site. Eventually after 32 of the 35 prescribed, I started having bad fevers....102.7.

Stopped the Amifostine, fevers stopped and finished my last three rads.

I'd do it again though....damn, did I say that..., I hope I never have to do this stuff again. It's all definitely a rough diet for sure.

JG

KTeacher
Posts: 940
Joined: Jan 2011

Yes, I had it the first time around, I do feel it helped keep saliva after the first go around. You are monitored after the shot. I got huge red welts on my tummy. I think that the meds that you take before ami made me very tired--but for a short period of time. To keep the 'spit' you can put up with the not so fun part. I was not able to use it the second time, my body said no way--been there, done that! Not much saliva now but I am able to sleep through the night. Keep water with me during the day. I vote yes.

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

I took it on my first radiation treatment, had no side effects from it at all. Hated drinking so much water before having to take the injection, somewhere around my 4th week had to take IV because I could not drink anymore.

I believe it is what kept my saliva glands through my second treatment.

Hondo

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

Have 9 more shots of it to go. I don't get it like others got in...I go in at 12:00 and get hydrated for 2 hours, plus an anti-nausea drip (plus I take an Ativan at 1:30)...then 10 or 15 minutes before I'm going to head to rads they put the amifostine thru my tube. It has an unpleasant rush to goes from my belly to my chest...

I won't know what it does to help my saliva glands until rads are over...as far as keeping the mucous in check....it certainly has done that. I don't have any, other than my nose is a little full most of the time.

I think once this is over, I'm going to be glad I stuck it out.

p

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Mine was pretty dry at first, for a few months actually, same with taste, so don't get discouraged if you don't have fast results.

But everything started coming back within a few months and progressed for nearly 2 years to the point of where I am now.

Some were faster, some slower....

JG

tuffenuff's picture
tuffenuff
Posts: 277
Joined: May 2012

I think I will ask her again. The horrible mucus is one of the worst things I'm dreading.

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