Hello everyone

My name is Frankie, 55 yo and female, diagnoised with squamous cell cancer of the tongue back in late Sept. 2005 I had the small lesion removed in October and more tisse removed in Nov. for a total of 5mm of surrounding tissue removed. I am now on my 11th day of radiation. My doc and the patholgy says they got all the cancer with the surgery, but there are some remaining pre-cancerous cells on and in the tissue of my tongue. So I have 11 treatments down and 21 to go. I do take the Amofistine shots in my tummy each day as I have read on here many of you do also. It makes me really sick. I have switched from the compazine to Kytril. And I still get sick. If anyone has had any luck on having a non-nausea day on something else please let me know cause I want to try it. I am losing all my taste rather quickly, or rather it is being replaced with the metallic taste I get from the shots each day. Beginning to think I would be better off without the shots, at least I wouldn't be sick and have the metal mouth every morning.

So glad I found this forum. Looking forward to learning from everyone and helping out where I can too.

Frankie

Frankie, I had a terrible time with Amifostine too. I had a couple of non-nausea days with Zoloft combined with a steroid they gave me intravenously before the Amifostine (can't rememebr what that steriod was called but it made me feel better than I had any right to).

Most days I vomited though.

I quit altogether for four days because I was so sick from the second chemo I couldn't imagine getting the Amifostine too but then my rad oncologist encouraged me to go to an every other day treatment which I stuck out until the end.

Nelie

Frankie...welcome to this spot.

There are some "low-tech" things you could try. My husband was very sick from the Amifostine, but found a couple of things that helped - beyond, of course, the anti-nausea drugs the docs prescribed. One thing he found helpful was breathing peppermint after the treatment with Amifostine. Another was applying pressure to points on his wrist suggested by an accupuncturist. I know these sound a little lame, but they really did help him. He also insisted on getting out of the hospital and into some fresh air between the injections and the radiation. I don't know - sometimes simple little steps can make a difference.

We're all pulling for you.
Anital

I should add that my husband managed to make it through 36 days of Amifostine - combined with radiation and chemo, using some of these simple ideas (that, plus being very bull-headed, which turns out is a good thing during the difficult days of treatment).

Anita

HI ALL
HAVE LARYNX MASS 2-3 CMS AND LYMPHNODE 2-3 CMS AM CURRENTLY 5WKS INTO 7 CHEMO AND 22 RAD TREAT OUT OF 36-46
MY QUESTION IS HAS ANYONE SEEN BENEFITS FROM ETHYOL SHOTS I HAVE HAD 2 DAYS ON THE FLOOR NAUSEA IN THOSE 5WKS AM WONDERING IF I SHOULD CONTINUE ANY FEED BACK WOULD HELP

THANKS ANDY

Welcome to OCF...
Darrell

Frankie, my husband is currently going through radiation. He has had 19 of 39 treatments. He is also getting the ethyol injections. He has been very sick also. He lost 8 lbs. in 2 days. He only had 1 shot this week. He is giving himself a break and will try again on Monday. His doctor changed his meds from compozine to Zofran and also gave him a steroid to take 1 hour before injection. I will let you know how that works out.

Gary
Patient Advocate (300+ posts)
Member # 457

posted January 20, 2006 05:03 PM

Frankie the "metal mouth could be the chemo as well, but few here have been able to tolerate Amofostine. You're going to lose your sense of taste from either the radiation and/or chemo temporarily.

Zofran is one of the best antinausea drugs, I used compazine suppositories when I was throwing up too much to keep pills down (and I just had Cisplatin). I also smelled like a chemical waste dump for a few weeks after the chemo was over.

If you are getting IMRT I would ask them directly, what the amount of benefit you will achieve from Amofostine. I didn't have it and have quite well recovered salivary function. Standard radiation (XRT) is another matter.

--------------------
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm tumor, right tonsil, Stage III/IV, T3N0M0
Tx 1/28/03 through 3/19/03, Cisplatin Chemo x2, IMRT x33(81cGy)
Posts: 1582 | From: San Francisco CA | Registered: Nov 2002 | IP: Logged

Thanks for alll the helpful hints. My shots are on hold for the rest of the week and I have been feeling so much better. I am not getting any chemo and I am getting IMRT. I actually quit the shots due to a rare side effect I am having now. Extreme bone and joint pain that occurs about 1 hour after the injection and last for up to 12 hours. Anyone else ever have this problem ? I am going to post this in symtoms also and see if I get any feed back.

Thanks again for your replies.

Frankie -
Severe nausea is the worst! My husband, Kenny, had to deal with severe nausea from week 1 of his treatments. Nothing seemed to work. The compazine suppositories worked a little. Kenny was finally hospitalized with critical dehydration. He ended up with a J-Tube (inserted into his small intesine instead of his stomach). He ended up with a combination of drugs to manage the nausea - compazine + adivan. Adivan is an anti-anxiety drug that has the benefit of helping nausea. You might ask your docs about trying multiple drugs to get through the worst of the nausea.