Hello all; I have visited the OCF site a few times and been very encouraged by the sound information there is available here. Like most oral cancer patients I realize there is little awareness of our situation especially the post rad dental/saliva problems. I have had 35 rad treatments both sides, with 8 boosts, and am still waiting for stability in managing mouth and post rad neck pain. I am being treated with Neurontin (gabapentin) and epilepsy drug which calms down nerve endings..not yet, but hopeful it will work. Needless to say, the threat of recurrance is very present when we experience pain. This my second round with cancer has been the challenge of my life. I am happy to join such a supportive network of courageous people.

Hello Fran,

Welcome to OCF. Happy to have You join us. I never used Neurontin myself, but I have a friend who takes it for nerve pain from burn and grafting and she told me it took awhile for it to start working. Quite a few here are and/or have taken it also and I am sure that they can give You more specific info re. what they have experienced with it. Sorry You have had to battle this beast (especially twice), but You could not have chosen a better site for info and support. Sending positive thoughts Your way and hoping the pain begins subsiding soon. Where is Sudbury?

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Fran
Welcome to the site , as you probably know from your past visits we have a very positive, helpful, group of people here. Keep in touch we need all the support we can get...so do you!
Best wishes for your good health.

Take care
Marica

Welcome Fran

Sorry that you have had two rounds of cancer. Were they both oral cancer?

I'm so pleased that you have joined this supportive group. Your experience will help others as they go through their treatments. Sounds like you are having a hard time with pain at present. I hope the drugs will help you with that. I look forward to hearing that you are recovering. Coping with cancer has been the challenge of my life also but one that has brought its rewards.

Love and light from Helen

Thank you all for your warm welcome! It's incredible how insightful people can be when they've taken the "walk".
We truly have a very unique form of cancer, one that can bring out the very best or worst in a person. The Creator seems to have endowed the OC folk with an extra helping of compassion along with the troubles.
Sudbury is the Nickel Capital of the World...located in Northern Ontario amidst the rocks and pines where the temperature today is minus 21 Celcius or for you folks still on the farenheit scale, it's about 5 below zero.
We have a large regional Cancer Center here, so seeing a doc is not difficult. Because of our medicare system in Canada the treatment has not put us out of pocket (except for prescriptions).
I have enormous sympathy for those who have had to take on mortgages and worse in order to regain their chance at life.
Thanks again for the responses..I'll try to follow your good examples.
Cheers,

Hello Helen; Actually my first cancer was stage III metastatic melanoma, practically a death sentence with 15% five year survival! Here I am 11 years later...God ain't thru with me yet.

Fran, I can't imagine how -21C must feel! I expect it looks like fairyland with all those pines covered in snow.

Congratulations on surviving late-stage melanoma for 11 years. I'm sure your positive attitude will get you through your oral cancer also. We're here to support you.

Love Helen

Fran,

I'm just a newbie around here, but I want to welcome you just the same. Here in the Seattle area, it's a balmy 3C today. Sunny and clear, though a bit of snow is predicted for the weekend.

I suspect that it takes a great deal of strength to live in a place where nickel ore is extracted from frozen rock and pine trees and that strength appears to have served you well.

I am happy to say that I have forgotten the post-radiation jaw and neck pain. The limited jaw mobility, the TMJ pain, the spasams. With any luck, you will soon forget it, too.

Ken

Hey Fran,
Welcome to the site! You are one courageous person with all you have been thru. My hubby was on Neurotin during his treatment and it took a while to kick in but it did and helped alot. He goes to physical therapy for shoulder problems from the rad neck dissection and continues to have dry mouth which prevents his eating different things, but still each month out things do get better.
Take care and God bless,
Debbie

Hello Fran,

Welcome to the club nobody wants to join!! Glad you found us and hope we can ease some of your concerns regarding after treatment problems. Nice to hear about surviving 11 years after such a serious dx. You can beat these odds to. Ask any question you can think of and someone will reply. Please keep us posted on how you are doing. We love to hear good news!!

Danny Boy

Fran,

I'm glad you found this site - as you've already discovered, it's a great source of information and support. Did you just finish radiation? The rule of thumb seems to be that it usually takes about one month of recovery for each week of radiation treatment, although obviously there can be some differences from one case to the next. It does take quite awhile for the pain to diminish, and the dental/saliva problems can be an ongoing fact of life -- but there's a great deal of helpful information on this site about ways to deal with those chronic issues.

Where was your tumor located, and what was the stage? If you can provide us with a little background about your situation, you're likely to hear from people who have had similar cases and can describe their recovery experiences.

Cathy

Hi Cathy; My primary was the base of the tongue and there were mets to several nodes in the neck. I finished radiation in mid August and have suffered all the usual low immune system problems that are part of the process. I do however continue to lose weight, but as I taste more the appetite will return.
I am dry as a bone with all saliva glands blasted to smithereens with the bilateral rads.
Your words about one month of recovery for every week of rads is such a helpful piece of info. That "perspective" thing can sometimes be so elusive. My major problem is the radiating neck pain, and the hopeful message about neurontin kicking in eventually has been received with joyful expectation.
Thank so much for all your input, I hope to be a good contributor to the encouragement that is found at this site.
Bless you all.

Fran,

Welcome to the neighborhood. If you hit the search button towards the top you will find a few neck excercises that may help the pain a bit. I found that if I did them every day or even twice a day, the pain subsides. Somewhere between the excercises for the neck, the excercises for the hip, the excercises for the back and the excercises for the shoulder, I don't get them all done. I guess my pain is truly my pain at this point . I have completely weaned myself from all medication, though, and I think that is a good thing.

I am hoping for a speedy recovery for you and some pain-free days around the corner.

Ed

Ed,

I tried searching for those exercises and struck out. I am especially interested in the hip exercises, because mine's been bothering me for a while now.

Ken

Ken,

OOPS, my bad! The excercises were for swallowing and for the neck pain. I learned the others from a PT. Interesting to hear your hip has been bothering you. I woke up one day last March and could not cross my right leg over my left. It never stopped hurting until I had the physical therapy. The therapist stretched the joint a bit, several different ways and had me do some excercises.

One, is the clamshell. You lay on your side with a pillow under your neck, bad hip up, knees bent. Without rotating your hip, lift your leg up for a 2 count and let back down. Do this until you can do 20 with a 1 min rest between 3 sets.

Two, on your side with a pillow under your neck, legs straight, back side against a wall, lift your leg with your calf and your heel against the wall. Keep your knee straight, hold for a 2 count. Work up to 3 sets of 20, 1 min rest between sets.

Three, flat on your back, squeeze your buttocks together and lift your pelvis as high up as you can. Hold for a 2 count and work up to 3 sets of 20 with 30 sec between sets. After you do this for a few weeks, work towards doing the same on one leg only, with your good leg crossed over the bad hip leg.

I hope this helps.

Ed

Ed -- Many thanks. I'll give these a try.

Ken

Fran, welcome to the site. Sorry you had to find us. Hopefully, we can help each other and new people as they come on site. Will pray for relief of your pain and that you will defeat this disease entirely.