I had gone back and forth on the Amifostine for two weeks prior to starting treatment. It seemed like the risk of intolerance was pretty high compared to the benefit my caregivers 'estimated' it to provide. I decided I had to at least try it. I figured if I never even tried I'd always wonder 'what if'. So I did try it, every day for my whole first week of treatment last week. But it was making me more and more sick all the time and I just couldn't hack it any more. Nausea, sickly feeling - just nasty. So I'm off. More power to the folks who can tolerate it - my hat's off to ya'.
I suppose I won't have gotten any significant benefit from using it only a week. But I am fortunate enough to have IMRT and some (hopepfully) skilled mapping to minimize unnecessary damage.

I can't say enough to all of you who make this site tick. It is a daily source of information and encouragement.
-Steve J.

Hi Steve! Where are you getting treatment? I tried Amofostine & could only take 3 days before they actually cut me off because of bad allergic reaction. It would put me into sneezing fits & send my blood pressure real low & by the 3rd day by the time I got from the hemonc floor to the basement to the rad dept I was shivering & lethargic & sneezing! They wrapped me up in blankets & put a heat lamp over me & made me drink fruit juice until it wore off, about 30 minutes, & then I went on to my 3rd imrt dose. Pretty strange stuff. Everybody seems to have all different experiences with that stuff. My radonc guy said it was only expected to help protect about 10% more parotid function anyway if one could get through it. I definately have reduced spit production in the area around my tongue & back of throat, but it's only a problem early in the morning when I first wake up. It wouldn't be much of a problem except that the structure at the back of my mouth/throat has changed & now when I sleep air circulates in & out of my mouth from my throat & dries it out even more. It's kinda wierd, my mouth is not open, I breathe through my nose, but since so much of my tongue is sort of nonfunctional, it does not close off the back of my mouth. Bottom line is I don't think I missed much by not having the Amofostine & any changes are really not that big a deal considering the fact that I am an alive, living & fully functional, happy human being today! I had an absolutely delicious meal tonight! Boneless, skinless chicken breasts smothered & baked in bbq sauce, Bush's baked beans & tomato/onion/olive oil salad! Very delicious, easy to swallow & healthy! Desert was fresh strawberries with a little chocolate cake! The cake was a little tough to deal with, but a glass of milk took care of that. Keep yer chin up Steve! All the treatments will be over soon & you can get on with your life. Erik

Hi Stevie
How are you feeling? You finished your fist week!!! Hats off to you. Please remember that this is a journey and, with time, this journey will end. (Battle it with everything you have).

I'm getting treated at Mountain States Tumor Institute in Boise.
I spoke with my doctor again about the Amifostine. He's not convinced that my sickly feeling was from the Amifostine - he thinks it may have been from the chemo instead (Cisplatin). I don't know. But I've agreed to give the Amifostine another try next week when we could judge for certain that any symptoms are from the Amifostine (this week and next week are off-weeks for chemo). I guess it make sense to at least be certain that it was in fact the Amifostine making me feel so crummy and not just a delayed Cisplatin reaction.

Thanks for the responses.
- Steve J.

Steve,
My Dad is taking Erbitux as his chemo drug and not Cisplatin. He is in his 4th week of treatment and has been taking Amifostine since the beginning with essentially no side effects from the Amifostine. He does take Compazine(anti-nausea) pill every morning prior to the Amifostine shots. I would give it another try - hope you have success. Based upon my Dad's experience, your Doc could have a point
Good luck and let us know!

Steve,
You're not alone. So many here have not been able to complete Amofostine treatment that I personally wonder why they bother prescribing it. One of the bummer things about Amofostine is it that it would seem is how immediate the adverse reactions are. I was 3 weeks (1/2 way) into treatment before things started to get very nasty. Do a search on "Amofostine" and see for yourself.

I think Sue 1215's dad is the third or fourth person I have heard of that could tolerate it (and he still has 2 weeks to go). One person said that the particular delivery method they used made a difference.

Erbitux is not supposed to cause as many adverse reactions but some have reported adverse effects from it's use. Everyones body chemistry is different and that is why some drugs work on some and not others or why some have adverse effects and others don't.

If you're having Cisplatin who can can tell what causes what?!?!

Hi Steve,

My husband is on his third week of radiation treatments and is getting amifostine subcu injections as well as cisplatin. He is tolerating the injection so far, including during the cisplatin cycle. We were told that subcu as a delivery method has less side effects than IV fpr what it's worth.

We had heard about the side effects and also struggled with the decision but decided to try it and take a very proactive approach to the nausea. So he takes zofran twice a day every day and uses the compazine for break through nausea. In addition he takes claritan 1 1/2 hour before the subcu injection with an additional 16 oz of liquids. On the weeks he is having cisplatin he also adds emend for 3 days and I do 12 hours of IV hydration through his port on those nights. Hydration and nutrition is a really big part of this. Jack has a peg tube and is using it for most of his nutrition. He is still able to swallow liquids by mouth and we are watching out for any signs of dehydration as things can deteriorate pretty quickly if that occurs.

Our MO seems willing to try most things we've discussed but I have noticed that we need to be very clear with him that we want a proactive plan on the side effects that are very common and that you can do something about as opposed to the ones you just live with.

Some people have told us that they skip the amifostine on the cisplatin days so that's another option. Jack thinks the shot is painful going in but that stops after 10 minutes or so. He felt that the cisplatin really wiped him out and it took about a week to stop feeling awful from that. This week is a non chemo week and he is having no nausea and his energy level is better - in his case it was the cisplatin.

Hope this helps and good luck with trying it again. It seems to me that there's no right or wrong answer on this, it's real personal when you're the one having the symptoms.

Jack has done okay on the zofran so maybe you could ask your MO/RO about different meds? The MO/RO will probably need to get additional authorization from the insurance company to pay for daily doses of zofran as some them limit the number of doses alloted per month in their formularies, but that's true of many different medications so they're used to it.

I hope that things will get better for you this week. Jack has his second cycle of cisplatin next week so we'll see what happens as time goes on.

Regards JoAnne