I've been searching the internet for informative websites and this one is the best I've seen.

I start a 6 week radiation course on 2 Feb 05 and would appreciate hearing from people who've been through it. I am interested in how you coped with the side effects, organized your day, kept your head up, etc. I have all the pamphlets, but they really don't address the day-to-day business of getting through this.

My operation was on 15 Dec 04: left & right neck dissection( incision from ear to ear), removal of tongue tumour (and more than half my tongue), flap made from inside wrist, skin graft for wrist from thigh. The swelling has gone down quite a bit; still very hard under my chin. Numbness diminishing both on face and inside mouth. I am told that nerves in the flap may take awhile (if it ever does). I lost the teeth on the lower right jaw because of the size and position of the tumour - the doctor left enough bone for dental posts later. Swallowing was difficult at first. My nose tube was replaced with a PEG tube on Christmas Day and in preparation for the radiation. My tongue and flap are still swollen and numb so I am officially on a full liquid diet plus Isosource 1.5. Wound sites for flap, skin graft, incisions, trake are healing really well, and the VON nurse's last visit will probably be next week.

Radiation has me nervous, particularly the side effects. I'm not too worried about pain - that can be treated with drugs. It's the saliva and ability to taste, and the possibility both may be permanently lost that has me in a twist.

That's it for now. Thanks for the ear.

Best regards
Myrna

Hi Myrna and good morning, It brave of you to want to know what CAN happen
I am afraid got all the side effect inculding damaged vocal chords,tireness and panfull shoulder and armw hich still prevail today 3 years on.
I would say the worst thing was haiving to go every day for 36 days that was agonising
My worst thing was the sorenesss and swelling.
I suggest you read some of the "my stories and get an idea of how we coped.
Any questions any time I am sure some oneone here will answer for you.
PLEASE remember we all react differently some more lucky (if I can use that word)than others.
I wish you all the best in your recovery

Paul

Hi Myrna

We can share the experience together, I start 6 weeks of radiotherapy on 3rd Feb, and I am the same as you I want to know how I am going to feel, what to expect,it is terrifying isn't it? the unknown!
I sit at the internet for hours trying to find different peoples reactions, at least it gives you an idea of what to expect. This is definately the best site, everyone is so helpful, and if you feel down, these are the people who truly understand as they have all been through it.
Pauls right, read some of the stories on the home page.
I also had left & right neck disections with the wonderful scar from ear to ear (very attractive!) my tumours were in my salivary glands not the tongue.

well, welcome to the site and we will share our experience together, what do you say?

Love
Tracey

Hi Myrna - Paul's hit exactly the right point saying that we all react differently. Paul, and many others had a really rough time with radiotherapy, whereas I had no reactions at all.

I had all of my tongue removed, plus "radical neck dissection" to the left. Results are that I'm on permanent PEG feed, and I virtually no taste. This was 3 years ago, and it's surprising how one adopts to circumstances.

Good luck with the treatment and please keep us posted on your progress.

Welcome Myrna,

Well, you've picked the right site for good information and helpful advice. Just to add to the varied experiences of radiotherapy I had 6 weeks and suffered very little save for the last 5 or so sessions which left some browness but no pain.

Post radiotherapy was different and I suffered some sickness, dry mouth, loss of taste. Any pain was well controlled with painkillers.

It is now 4 months since cessation of my radiotherapy and the only effects are slowly returning taste buds and dryness of the mouth. All else seems OK so far. I hope these remaining states recover in less time than experienced to date by Pikeman who however appears very philosophical about his situation if I read him correctly.

My problem was a T1 tumor on the base of the tongue lasered out prior to radiotherapy.

So Myrna, here's hoping you fall into the lucky(?) category of patients.

Regards, Fridge

Don’t want to minimize the seriousness of radiation. I had mine over a 6-week period, 5 days a week, with 5 passes each session. My tumor was at the base of my tongue and had metastasized to my lymph nodes on the right side of my jaw. I received my last radiation treatment over a year ago, and underwent a radical neck dissection eight months ago. Very slowly, I am getting my taste back, and the salivary function is also returning somewhat. I was told a few months ago by the surgeon who did the neck dissection, that I had at least another year before the inside of my throat healed from the radiation burn. I experience a lot of discomfort because of the burn, but it will get better I am sure once the healing starts. I am diabetic also, so that affects the time it takes for my body to heal itself, so your instance may not take as long. It is very important to keep your sense of humor alive through cancer, because without it, I don’t think any of us would make it. When I was at my worst and in intensive care, whenever the doctors or nurses would ask me how I was doing, I would always tell them “Never Better.” Don’t give an inch to this disease, you still have a life to live, and at least for me, I think it is eventually going to be great!

Hey Lifeisgood,

Where is mandan?

Regards, Fridge

A History Of The Mandan Native Americans

quote:

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During the eighteenth century, white explorers and trapppers heard legends of a small, peaceful Indian tribe, some of whom had blue eyes, blonde hair and spoke Welsh. Finally, traders came upon the tribe living in what is now western North Dakota. Blue eyes, blonde, even grey hair were, indeed, found among them and many of their words were pure Welsh. Strong evidence has allied this tribe with a Welsh settlement on the Ohio River in the mid-fourteenth century.

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Mandan is a city located in Morton County, North Dakota. As of the 2000 census, the city had a total population of 16,718. It is the county seat of Morton County.

Dear Myrna.
I am sorry to hear about your cancer and I hope that now that you have finished your radiotherapy you are now on the road to recovery. No doubt at this moment in time you are at your lowest ebb. Please remember the body is its own healer and with a positive attitude you will beat this horrid illness and enjoy life to the full. I underwent a radical neck dissection and removal of my tonsil which was cancerous. I had 33 sessions of radiotherapy and 6 all day sessions of chemotherapy. I finished my regime on December 13th 2004.
Now after nearly 4 months I have Xerostomia (dry mouth) but really that’s about it. I had a peg in my stomach until February 1st 2005, but as soon as that was removed I decided to go on Holiday to Dubai and not take any liquid shakes (Scandishakes). I had no choice then, but to eat normally. So prawns were on the menu 24 -7, but I did OK. I know that after reading your original letter you biggest concern is taste and saliva. At present the dry mouth is an issue although now it is 10 times better than when I first stopped treatment. I can drink alcohol, wine and beer. Although drinking wine and eating at the same time is a little unpleasant as the wine can sting a little. I can eat fillet steak, mushrooms, all cereals, eggs bacon sausages, pretty much most foods. I do draw the line at cheese and crackers, but I am working on it.
I have been taking a pilocarpine tablet called ‘Salagen’ for 1 month now, I cannot say I have had marked improvement with saliva production but the course is for 3 months, so I will make a decision at the end of May. Try chewing gum (sugar free of course) It may sting when you start but it does keep you mouth wetter and more comfortable.
So life is getting back to normal. It won’t beat me and it won’t beat you. Keep smiling, take each day as it comes, reward yourself every time you mange to eat something new. Good Luck
James Bagnell

Link: Dry Mouth after Radiotherapy

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