Hello I was diagnosed 11/16/04 with SCC of the right lateral oral tongue. The local head and neck surgeon made an appt for me to seen at Sloan Kettering in NYC. Had right modified radical neck disection, type III, right per oral partial glossectomy. Spent 8 days in the hospital and recovered well from surgery. I started radiation 1/19/05 and after 3 treatments I am already seeing major drying effects in my mouth. Doctors are also giving me injections of Ethyol which is suppose to help with the dry mouth. As of today it is not working. Has anyone had success with this type of injection?
I am getting more frightened as I read information about my treatment online. Any advice and/or help would be great appreciated.

Hello Tessa, welcome to this forum.

The effects of radiation on saliva are felt almost immediatly. The amount of time it takes to gain back any saliva (if at all) is quite variable. Each person will have different recovery. Right now I don't think anyone can tell you what you will experience. I did not have Ethyol (amifostine) but several here have. It seems some are able to tolerate it well, others have had trouble and it makes them ill. As I was told it was developed for the military to combat radiation sickness if we were ever to have a nuclear attack. (I have not confirmed that). It does appear to help some people with salivary function especially after the radiation treatments end.

Many here have been through what you are going through. We are here to help as you progress through treatments. It can be scary at times (I know that first hand) There are several things you can do to help adjust to the low amount of salivia. Get a good humidifier or two and put one in your bedroom. Stay well hydrated, most of us had to carry a water bottle for quite a while. There are several dry mouth products out there, The Biotene product line Laclede web site is one that many of us found to be great. You can find Biotene at larger drug stores. Eating will require more liquids. I found that Whole milk worked very well as a saliva substitute.

Your bigger challenge for the weeks ahead will be maintaining weight and fighting fatigue. Try to make this your only job.

You have several good things going for you, including that you are being treated at one of the best (if not the best) centers in the US.

Radiation is a beast no doubt, but it works.

Take care and feel free to ask questions and/or vent here. Tell us a little more about your self. Do you have family or friends to support you as you get through this?

Take care.

Tessa,

Welcome to this site -- or, as it's sometimes called, the club nobody wants to join.

I'm glad you were able to get to Sloan Kettering. As many here will tell you, it's very important to get to a major cancer center as soon as possible with this disease, because too often it's treated by half-measures in hospitals that have fewer resources focused on oral cancer. Please try not to be frightened by what you read about your treatment, but use the information to be as prepared as you can for the possible side effects. Dry mouth is pretty much an inevitable result of radiation, but different people experience it to different degrees. As Mark said, it's important to do what you can to stay hydrated, and be sure your doctors are giving you what you need to soothe the lining of your mouth and, if necessary, to fight off infections down the road.

Also, be sure to concentrate on maintaining a good level of nutrition, and if it becomes too difficult to eat by mouth at some point, you may want to consider a PEG tube (I never had one, but many here could not have gotten through radiation without it).

Feel free to come back here often and ask as many questions as you need to to help you through these next few months.

Cathy

Thanks Mark and Cathy for responding so quickly. I am single, never been married, no kids. I also care for my 84 yr old mother who lives with me. She fell 2 weeks ago and fractured her hip and doctors also said she needed a pacemaker due to her irregular heartbeat. She is still in a hospital 40 miles from me in eastern PA. Will be sending her to a rehab in the next week or 2. So basically you can say I am alone in going through all this cancer treatment stuff. I have friends that call but they don't know what to say when they find me upset on the other end of the phone. I consider myself a strong person but don't seem so strong right now. Thank you for reading my message and taking an interest in helping.

glad to help Tessa.

I think it helps a lot to have someone (or two) to help you get through this. You may fairly well breeze through the treatments or you might have more difficult side effects. In either case you might need or want a support person close by. I generally felt better in the company of other people (they might say they felt worse!) it helped me to feel among the living.

I am sorry about your mother. I hope she recovers quickly. It is certainly an extra mental burden that you didn't need to have to deal with right now.

Tessa,
Certainly sounds like you are getting hit hard with challenges right now. Just remember that, even though things can look bleak now, they will likely get better.

My husband was very stubborn about insisting on the Ethyol injections, even when they made him sick. I think he is glad, almost two years out from treatment, that he stuck with them. His doctors tell hem that he has more saliva than their patients that didn't take Eythyol. He feels like he has bad dry-mouth, but guess it can be worse.

Anyway, don't be afraid to give your friends concrete ways they can help you. They will be happy for the opportunity and you need the support.

Best to you,
Anita

Hi Tessa; You are in good company now. As a recent arrival to this site myself, I can assure you that the folks here listen respectfully and respond intelligently.
The wonder of it all is that we can find others who have had this rare form of cancer. I hope you will keep us informed of your journey to recovery. It's a road we all have intimate knowledge of...rocky bits included.
I agree with Mark that radiation is a beast...but it saves lives, so that's that. You will find a lot of tips for coping with side effects from the members here.
With your Mom's situation now you may be tempted to short change your own need for rest. Please don't!
Hopefully she can "partner" in your treatments..through prayer or just positive thoughts, and of course, her love for you must be a strong force in your life. Somehow a lot more seems tolerable when we feel loved.
Do you have any sibs who can give you help with your Mom?
Please know that you are not alone now.
Blessings to you,
Fran

Tessa,

I didn't have Ethyol injections. In fact, this is the first I've heard of the drug. However, I did have rediation treatments and everythingthat goes with it.

It's been almost 2 years since I finished radiation. The burns have healed. My taste buds are back (though I can't eat hot, spicy foods yet). Dry mouth is no longer the problem it once was. I'm not so tired anymore, but some people still say I'm cranky. I'll settle for that.

We're here to walk down this hard road with you... albeit at a distance. And you will learn from our stories that there are brighter days ahead.

Ken

Hello Tessa,
Welcome to our little corner of the world!!
Did they tell you what type of radiation you are receiving?
What was the staging of your tumor? As Mark mentioned Sloan Kettering is one of the best Head & neck Cancer centers in the USA.

I had IMRT radiation and I haven't experienced the dry mouth many have. I do drink alot of water every day. It helps in these dry Wisconsin winters.
Take comfort in knowing you are being treated at such a major comprehensive cancer center. Many of us have traveled the path before you and can be a valuable source of information to tap into.

Sorry to hear about your Mom. Is there anyone else who can help her through her recovery? I'm afraid you will need all the energy you can muster to get through your treatment.

Take care and know you are not alone as you start your journey.

Danny Boy

Tessa, welcome to the site. Sorry you had to find us, but we'll help all we can. For me, radiation treatment was the most difficult part of the battle to beat this disease. It starts slow, but adds up as you get along toward the end. I had 35 treatments, 5 per week for 7 weeks. Chemo along with rad and finally a right modified radical neck dissection. That was after a tonsilectomy which I thought was the worst until rad. The good news is that no matter the treatment, you can get through it and then recover. It isn't a party, but doable. It also helps to have others near for support and help. I had a peg for a few months and would not have done near as well without it. As it was I lost 25% of my body weight before it was all over. 50 pounds total. Almost a year later, I am now watching my weight a little as I have gained back almost 15 pounds. Will pray for your ease of treatment and complete cure.