This is my first day signing on with OCF and I am so happy to have found a forum with so many communicative people. That has been my biggest frustration since being diagnosed - having people to share info that is relevant and encouraging.

I was diagnosed April 1, SCC base of tongue, T2N2M0, and started chemo sessions instead of surgery. I have now completed three chemo sessions, cisplatin and taxotere, and my nodes are shrinking. I am starting IMRT next week and the question was raised on whether I wanted to receive Amifostine to prevent salivary gland damage.

I checked the clinical data, side effects, etc. and I am concerned about the low blood pressure issue mostly as I tend to have low blood pressure to begin with. I have been fortunate that the chemo has caused little nausea, just loss of appetite.

I would welcome comments from people, both pros and cons, on personal experiences with Amifostine during IMRT. Thanks in advance for your reply. Hope you all have a good day.
Kathy

Hello Kathy, and welcome! Sorry that you have had to face this cancer. I did not receive Amifostine personally (local Rad. center didn't offer) however several people here have and will likely reply to your question. From what I have observed, it affects people differently i.e. some have few problems with it and others have quite a bit of trouble, mostly nausea. I would suggest that you try it and if you can tolerate it stay with it. Anything you can do to provide better saliva post treatment will help you.

I wish you well in your upcoming treatments. Get as much nutrition in you as you can and we'll be here for you as you progress.

Kathy


Everyone is a little different. I have low blood pressure normally and didn't have any problem with blodd pressure. What I had a problem with was aches and pains, cold and hot all at the same time. I also broke out in a rash. I was getting the medicine by my port, and was told they had never seen this happen before. When I stopped getting the amifostine all my this stopped. I have read here where alot of people have been able to take it fine, with no problems. I would think you can try it, if you have problems talk with your Dr.

Mark,

Thank you for your comments on Amifostine. I will take them to heart.

I always read your comments on adjunctive treatment options that you wrote back in April. I am thinking about getting a juicer to assist with the dietary restrictions I expect will occur.

Your insights are greatly appreciated. Take care of yourself.
Kathy

Joan,

Good to hear your low blood pressure was not an issue, but it sounds like the other side effects necessitated your stopping the Amifostine. I will have a port too, but I understand you can get the injection IM or subcutaneously as well. I may request this option to start and see how I do.

Thanks for your reply. I hope the rest of your treatments went or are going well. Take care.
Kathy

If you can't take that, there is always Salagen or another drug whose name fails me at the moment. Your dr will know.

Take care,
Eileen

Kathy

I'm as of June 11, 4 years out of treatment. Everything is great. I was staged at IV, so every day is a wonderful day, sometimes I hear cancer and I don't cringe. I hope your treatment goes well, and you can get on with life soon. It will be hard, but I just kept the light at the end of the tunnel in mind.May God bless and keep you.

I wasn't offered amifostine at all when I was dx'd this January. Currently about three months out of treatment, I've been taking salagen pills, but not seeing much effect on the saliva. But I have noticed that the saliva sort of comes and goes. Sometimes I have a real dry mouth and other times it's tolerable.

Another cancer patient told me that instead of salagen which didn't work for him, he tried a prescription called Evoxac which did work. I wrote it down for the next time I talk to the doctors.

Jen

Hello Kathy and welcome to our little corner of the world. I sorry you had to find us but glad you did. You won't find more useful information on oral cancer than this website. It has helped so many people. Your now part of a large international cyber family.

I had 33 treatments of IMRT radiation and still have some salivary function. I had no drugs to help preserve that function. My tumor was a stage 4 right tonsil cancer. With IMRT radiation being a more precise tool you may not lose all of your salivary function. I would ask your doctors about where they intend to radiate you.

Welcome again, Best Wishes, Danny Boy

Hi Kathy,

Welcome to OCF ... just wish you didn't have to find us but glad you did. I was diagnosed as stage IV tongue and underwent surgery (total glossectomy), chemo and 37 rad treatments although mine wasn't IMRT. I did have the amifostine shots daily before each rad and was one of the lucky ones in that I didn't have any reactions to it. I didn't care for the injections each day but, hey, a small price to pay for some extra spit! Anyway, I would give it a try and see how you tolerate it. Good luck and, again, welcome.

Hugs, Nancy

Thank you everyone for your comments regarding amifostine. I have decided to forego the drug for now and will be completing my first week of radiation tomorrow. Only 30 more to go!!! I am hoping I made the right decision for me. If not, there is always salagen and evoxac. Bless you all and stay healthy.

Kathy

Kathy, like Danny, I had IMRT and today, 3+ years out, have probably 95% of the saliva I had pre-rad. It came back pretty quickly, too, within a few months. I considered amifostine and decided against it, and am glad because I had the result I desired without it. Congratulations on completing one week!

Kathy, good luck and a prayer your way for minimal complications from radiation. Amy

Like Joanna and Danny Boy,
I also had IMRT and no amofostine. I too have recovered most of my salivary function.

Some people here have had a very difficult time with amofostine.