OK. I know this stuff will save my salivary function for the rest of my life but ever since day 1 it has been making me vomit. I've had a few days here and there where some powerful combo. of anti-nausea drugs they gave me worked but even on those days, my stomach felt so CLOSE to the edge.

At first it was just a quick vomit, no dry heaves, it was over when whatever I had in my stomach came up. The wierdest thing is how any little thing would bring it on. A cough. A sneeze. Cold water. So I'd go from the medical oncologists's office where I get my shots (next to the hospital)over to radiation medicine and sometimes I'd throw up in radiation medicine, sometimes on the way there, but I'd be OK by the end of radiaiton.

But now the reaction seems to be getting even worse. Now I'm also throwing up AFTER radiation,even if I have already thrown up before and (excuse me for being so graphic), it's not just one quick heave anymore to get stuff out of there, it's long prolonged dry heaves that sometimes take several minutes to go away. And this is with sores in my mouth and throat.

By some miracle, so far I have never vomited when I'm on the rad. table pinned down by the mask, though I have done so right before and after. And yesterday and today, not only was it prolonged right before and after radiation, but when I got home the jumpy stomach lasted another two hours. I couldn't even keep water down (by PEG or mouth). It felt like I had some kind of hirroble stomach flu for half the day (around 3 pm I could keep things down again).

Anyway, I'm in my fourth week of treatment. I basically have 3 weeks to go right now (15 days of radiation), I've had 18 days. Up until today I had been telling myself I'd keep doing the Amifostine even if it made me nauseated every one of those days because it's worth it to save me from lifelong drymouth. I'm also having IMRT, though, which should save me from *some* drymouth just by itself.

But I really don't know if I can hack this increasingly bad nausea. Not to mention that I'm afraid one day it will catch me on the table while they're all in the other room and that would be truly awful.

What has anyone else's experiecne been with this? What do you think I should do?

Your doing better than I did! They refused to let me have anymore Amofostine after just 3 or 4 days because it made me so sick & caused my blood pressure to drop so low. One of those days on the table, mask on, pinned down, they got the mask off & a bucket in front of my face like 1 second before I heaved! Lucky them!!! Can you imagine the sprinkler effect if they didn't?!! Not a pretty picture! I do have ok spit production today & think is slowly getting better all the time. Don't know if that helps, but that has been my experience.

Nelie,

I can't relate any personal experience with the chemo aspect, since I didn't have any (it didn't seem to be part of the standard regimen back then). I also didn't have IMRT, as it wasn't in use then either. Although I had general field radiation followed by brachytherapy, I've ended up with what I would call a tolerable level of saliva -- not great but manageable, largely with a combination of medication, Biotene, water, and sugarless gum. (This morning when I woke up I was drooling onto my pillow! )

I guess if I were in your situation, I might not be inclined to push much further with the chemo, given what it's doing to you right now.

Cathy

Nelie

I also couldn't take the amifostine not only was I sick, but I hurt all over and had chills and fever. Good Luck!

My husband endured the amifostine even though it made him very sick just about every time. I think he is happy he stuck with it, now. He has dry-mouth, but doctors tell us it is way better than most of their patients that didn't do the amifostime.

It seems like the chemo thrown into the mix makes the amifostine nausea even worse. But one thing he discovered was that getting out of the hospital and into some fresh air really helped. He would sometimes go outside after the amifostine and they would come get him when it was his turn for radiation.

Good for you...you are past the half way mark on the treatment!

Anita

Nelie:

Congratulations on making it this far! You are a real inspiration.

If you ask me, and you didn't specifically; I'd say you are not asking us what to do but really want to hear some encouragment to keep going with it.

Bottom line, you've made it this far. It would be a shame to put your salivary glands in jeopardy now, after all you've been through...In fact, it would be a greater shame to have gone through all the nausea and torture of the 1st half not to have the end result you were using as your goal in the first place.

On the other hand, there are dozens of survivors online here that can tell you not having salivary glands doesn't kill you. Not to diminish the discomfort or terrific quality of life issues they have to endure, I think I hear most of them saying, "It's better than dying...", plus, now a days radiation has made some minor steps forward and continues to improve, so 'maybe' without the Amifostine you would still have good pronosis re: salivary function..? (I presume you've already done your cost/benefit anaylisis so I won't ask you to rehash it all here)

The bottom line:

You made a decision to endure discomfort and pain today in the interest of tomorrow.

Ask yourself if your motivation has changed, or if you are just needing a little boost to get you through the last half?

(Of course it's easy for me to say, I don't start radiation for another couple of weeks)

warm hugs,

Michael

Hi Michael, Thanks for the advice but it is a bit late. I finished radiation four and 1/2 weeks ago. I ended up taking about four days off from the amifostine entirely. My stomach was so messed up from that and the chemo on top of that. Then for the last two weeks, I did the amifostine every other day.

I'm not sure how much good it did yet. I am taking salagen to bring back some salivary function right now but my mouth is very dry sometimes (when it isn't still filled with the icky phlegm) and it's too early to say what my salivation will be like in a year. My rad oncologist seems to think I took it frequently enough that it should help me.