I've been blessed to have survived life threatening tongue cancer 27 years ago with treatment from Germany's Dr. Hans Neiper combined with radiation.I had FIFTEEN YEARS of no side effects whatsoever except a little dry mouth.For the last 12 years,fibrosis and all the bad stuff associated with radiation has taken a toll on my tongue/throat/soft tissue area.This effects my swallowing and makes it difficult to pronounce certain words.I ram a "bougie" down my throat each day to keep it stretched out and that helps.If anybody knows ANYTHING that will help,please let me know.The Holy Grail to fix it completely one day will come from regenerative stem cell research. I hope to grow new parts that were damaged by radiation. If you haven't seen this,Google it....It will blow your mind.

I really appreciated your post. Very interesting. I have a lot of problems also. But mine have been constant from the time the radiation was completed in 97. I am going to look up some of the things you talked about in your post that I am not familiar with. Best of luck to you.
Jeanie
Oregon

Your post is kinda scary. Is this what I get to look forward to two years down the road? I know radiation is the gift that keep on giving but this is the first time I have heard about this side effect.

Are there any of you long termers out there? Are you experiencing any downhill slides like this? Brian, what's your read on this. Are his late side efffects something that happens often?

Take care,
Eileen

What is a "bougie"?

Eileen

Probably nothing to worry about if you did not have that special German treatment. I took the challenge and Googled Hans Nieper and sure enough on various web sites that expose Cancer fraud, he popped right up. Here is a short summary
[quote]Hans A. Nieper, MD (1928-1998), a West German physician, specialized in treating cancer, heart disease, and multiple sclerosis. For cancer, he prescribed a combination of standard and unconventional agents, including pharmaceutical drugs, vitamins, minerals, and animal and plant extracts. He also recommended that patients follow a dietaty program that excluded dairy products and distilled water and avoid certain physical agents, foods, and physical locations ("geopathogenic zones") that he considered damaging. There is no scientific evidence that his regimens were effective against any disease. Former National Council Against Health Fraud Pesident William T. Jarvis, Ph.D., characterized Nieper as a "proponent of crank theories." Neither Nieper nor anyone else has published any appropriately designed studies that back his claims....
In 1986, after Nieper made a promotional tour, the FDA notified him that the products could not be legally imported into the United States . A few months later, the FDA issued an import ban and a Talk Paper stating that the products had not been proven safe or effective . In 1993, the FDA learned that a company based in the United States was illegally manufacturing orotates and other Nieper products. The company's president was prosecuted and the products were seized and destroyed.[/quote]
Think about the TV show with Farrah Fawcett celebrating her "cure" over cancer from that nice German doctor and her clinic - a nice dinner and the private jet over and back - then repeat visits and of course then Death.
Sounds like our poster was very lucky. Just saying
Charm

Anita

Good old Google again
[quote]
Bougie: A thin cylinder of rubber, plastic, metal or another material that a physician inserts into or though a body passageway, such as the esophagus, to diagnose or treat a condition. A bougie may be used to widen a passageway, guide another instrument into a passageway, or dislodge an object.

Bougies are available in a wide range of sizes and degrees of flexibility. They may consist only of a simple cylinder. The cylinder may be equipped with such devices as: (1) an inflatable balloon to apply pressure against obstructions or narrowed walls; (2) a gauge to measure the pressure applied by the balloon; (3) a wire that is positioned at the site of a stricture, blockage or another problem to guide other instruments into the passageway; (4) a channel through which dye can be injected so that a site can be identified on a fluoroscope and (5) a light to illuminate a passageway for examination.

Bougies may be used to treat strictures and blockages in the esophagus,....Bougies sometimes play a role in treating achalasia, a disorder in which there is abnormal function of nerves and muscles of the esophagus (swallowing tube) resulting in failure of the lowest-most part (lower esophageal sphincter) to open and allow passage of food. A bougie is used to stretch this sphincter.[/quote]
charm

I could have looked that up but this was more fun. Thanks, Charm! You are a wealth of knowledge.

Anita

thanks, you just need to be able to discard 95% of the google search results to sift out the good stuff. To be specific here though, this bougie as described by the poster is
[quote]The bougie that I use for my daily stretching is 16.5mm and about 2 feet long.It's a medical device made of green rubber and a titanium vertabrae.The first thing I do when I get up each morning is put a small amount of lube on the bougie.I ram it down my throat for about two seconds and then pull it out.It sounds a lot worse than it really is,but I believe it really helps. [/quote]
charm

Eileen -- Well, the short answer is yes, I am having problems. I try not to be the subject of stuff here, as we are all so unique. I also want new posters to get the simplicity of the idea, that complications as a result of the extremely harsh treatments most of us have are a reality long term, but given the alternative (not living long term) they are just another one of life's issues to be dealt with. It can be discouraging in your initial fight to think that there is more crap down the road and life will never be the same. Not the same, does not mean horrible.

It won't be the same. That's a fact. For some it is harder than others. Since I went through radiation back when Moby Dick was a minnow, there was no vital structure sparing IMRT or anything like it. I have significant radiation induced issues that have gotten worse as time has passed. My dysphagia has gotten significantly worse. What happens is the radiation damaged the nerves that control the swallowing movements, and that damage manifests itself more and more as the years go by. Gotta love getting nuked. I am now 11 years out. My carotids are full of radiation induced scar tissue which has serious issues, I have discussed this here before. My swallowing issue is getting to a serious point. I cannot control the right side of my mouth or face from radiation induced nerve damage. (It's weird that when I talk only the left side of my mouth moves.... it's kinda creepy looking but people understand me). I have radiation induced sleep apnea from chronic sinitisus and the resulting discharge, that does not allow me to sleep more than a few minutes at a time which is not controllable. There's more. But I try not to whine when others are having more serious problems, or losing their battle completely.

Suffice it to say that radiation induced damages manifest themselves over many years, get progressively worse, do not get better, and it's part of the deal of having lived this decade that no one expected possible for me. It's an adjustment in attitude, which is the only thing I can control, combined with symptom treatment not resolution. A little bit longer and my use by date will have passed. Something else will get me, and I just try to stay focus on my mission at OCF till then.

Newbies. Don't pay any attention to this post. Don't let long term issues discourage you or make you doubt the value of getting through SURVIVAL first. My life is full, rich, and I am living a charmed existence. You have to be alive to have the side effects that I have. Keep that in perspective.

Since tx has ended I have had some problems here and there and even though I am a little more then a year completing tx I noticed some problems have become more pronounced then before. I haven't really thought about them or even looked back in what else could have been done in order to have avoided all of this--I figured it's my new life and I am strong enough to deal with it. Now, a couple of more issues popped up and I just have to pray and hope and believe that I am in good hands. Wow--how I miss just the regular after tx issues--I hate new stuff...After-all, I am a creature of habit.