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.

Charm,
Thanks for looking up that treatment in Germany. I felt a lot better about my future until I read Brian's post.

Brian,
I was about 3 months before you on that XRT machine but since I was an unknown primary, they may not have fried my throat as much as yours. I am sorry you are having so many issues. Thus far I seemed to have dodged those bullets. The only new issues I have noticed is my saliva is very thick when I wake up in the morning and I need to drink more fluids to stay hydrated. The latter may be aging more than radiation but who knows. Since I had my total laryngectomy in 2001, I have been able to eat many things I couldn't eat at all after radiation. Not a good way to avoid dysphagia, but a pleasant side affect of the surgery.

I don't expect your 'used by date' to be coming up any time soon, unless you do something silly on your motorcycle or airplane. People like us are to stubborn to die young.

Take care and thanks,
Eileen

And I thought I was alone. For about 6 months I have been trying to figure out this crap I have constantly in my mouth and the cause. I've been to many doctors to include ENTs, gastro drs., allergists, infectious disease drs., and more. During and after my chemo and radiation treatments (Jan 08)and about 6 months later, I did have the mucus and other things Brian mentioned. Then things sort of let up and I was doing pretty good until about 6 months ago. The mucus now is so different from what I had earlier, I refused to associate it with my treatments. Now mine is pasty and thicker, tastes putrid sweet, and never goes away no matter what I rinse, brush, drink. It makes me nauseous and I have no appetite. Now, all these doctors, when they find out I had radiation and chemo, say right away that is what is causing the problems. This is the first time I have read where others have problems after many, many years and they just seem to start over again. I still have a few more things to be checked out before I settle for my problem being caused by treatments 2 years ago, and if I find out anything, I'll report to you all. I guess we are all not alike, so everyone probably won't have this happen to them, which is good. Funny thing is even my radiation oncologist told me she had never heard of the "sweet putrid" mucus being associated with oral cancer treatments. So, I guess I am different if that's the cause.
julieann

No, you are not the only one. At times my mucous is also sweet, not putrid sweet but sweet enough. Usually my saliva seems to be very watery and constant, I will not complain about that because it's better then dry mouth.

Hmm, sweet tasting saliva? Sounds familiar, but I had this more than four years before the cancer and got it under control. Then, about five months after treatment I recognized that the lingering taste I had was not totally new to me. I ran my thoughts past my ENT and sure enough, it was LPR or laryngeal pharyngeal reflux again.

It took me forever to get the first diagnosis because, except for ENTs, most doctors don�t look for this. Unlike common reflux, which is caused by a weak lower esophageal valve (LES), this is caused by a weak upper esophageal valve (UES). This is not a common reflux and heart burn is not usually a side effect. It does give you a feeling of sinus drainage down your throat (Brian you mentioned this) and can intensify or mimic the effects of allergies. The drainage is always white or clear and never gives an indication of infection. Another key symptom is constant throat clearing, coughing or hoarseness. It takes a lot less acid to burn your larynx than your esophagus and this is what causes LPR.

I�m not saying this is what you have, but Google �LPR reflux UES� and you will find a lot of info about this. Read it and make up your own mind. With the radiation we�ve had to this area, LES damage is possible. LPR is hard to get rid of, but you can do it. Mine returned after the radiation and chemo and I am just starting to get it under control again.

Here is what I�ve done both times to get it under control:

• Take a PPI twice a day (First time insurance OK�d protonix 2x a day, this time it�s protonix in the a.m. and prilosec about 3:30 in the afternoon)
• Don�t eat two or more hours before bed. (very important at first)
• Don�t overeat.
• Sleep with your head elevated from below your shoulders. Not just from your neck.
• Avoid caffeine and alcohol. (I drink two cups of half/caf, but with food)
• I�ve also found that it�s best not to skip meals and if you think you may be getting a little acidic it helps to eat something baked or a piece of bread.

I�ve also found that it�s best not to skip meals and if you think you may be getting a little acidic it helps to eat something baked or a piece of bread.

The two PPIs is standard because 14 hours is the usual time a PPI lasts. I took one protonix for about 3 months this time because of insurance refusing to pay for two and did not have any improvement. About three months ago my doc said to add the prilosec in the afternoon. This has helped a lot.

One thing I blame for the recurrence is that I started eating a lot of ice cream when I started eating again. A 2- or 3-scoop bowl near bedtime on a daily basis made me feel good. It was one of the few things that tasted OK and felt good going down. I�ve now returned to my yogurt and walnuts snack I was having before the cancer.

Please Note: It can take up to 6 months to go away. It is a two step forward, one step back process. The first time I had this I weaned myself down to one protonix a day and then one prilosec OTC a day. It takes a long time for pharyngeal wounds to heal (as if I have to tell this group).

I hope this helps someone. I can�t say that this is what you have, but you might ask your ENTs to scope you and check your vocal chords. There are several LPR forums out there too.

I have had problerms with fibrosis as a direct result of RT since about 2 years post Tx. I have swallowing problems as well but it is very food specific. Rice and I no longer get along - it can actually clog up in my lower esophogus. Certain words I slur now. None of it shows any signs of improvement. My carotid artery on the side of the tumor is not visible any longer. And I had "tissue sparing" IMRT... I DO have good salivary function however.

[quote=Charm2017]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
[/quote]

Charm - FWIW,Dr Hans Neiper was a BRILLIANT pioneer and doctor and his treatment saved my tongue from being removed.I'm living proof to that and I still have my tongue.I realize that not everyone was as lucky as me. If I had my tongue removed in 1982 instead on going to Dr Neiper,my life would have been dramatically different.Red Button's wife and Fred McMurry both went to Dr Neiper as well with good results.Dr Neiper passed away several years ago but helped MANY people like myself that would GLADLY go back....especially when given the option of having my tongue removed by an American doctor...Dr Robert M. Steckler of Dallas,Tx....one of the top head and neck surgical onocologist in the country.

He was a quack who hurt many many people. Glad you were lucky.
It takes a lot for the FDA to finally act. Facts are facts
it's moot now, since he can no longer deceive anyone.
Charm

It's unfortunate that we have a member of this board accusing Dr.Neiper of being a quack/fraud based on something he Googled when I am living proof that he is/was not.You should do a better job doing your homework before making such accusations.There are LOTS of other people that benefitted from Dr Neiper.....as for you Charm,here is my tongue sticking out to you as proof.

So the FDA is part of this conspiracy? What is unfortunate is that the credibility of the OCF board is put into question everytime some true believer in discredited "secret cures" posts his rants. I did my homework in spades on this German FRAUD.
What is even more amazing is that you had real radiation treatment which is the only reason you are alive yet you peddle false hope and snake oil.
I notice you provide zero refutation of FACTS about the FDA prohibition or the total lack of any scientific proof of the late german doctor's secret cure.
BTW I still have my tongue and you would be better off biting your tongue before making a complete fool of yourself over and over with your sad little self deceptions. People like you make me wonder if oral cancer also causes brain damage.
We don't often get repeat visits from fraud promoters here, but as long as we do, I will keep shining the light of truth upon false cures. You insult everyone here with your nonsense but they are all to polite to trash you. Again, the FDA removal of his "cures" and their prosecution of the company that tried to trick cancer patients is not an accusation, it's a fact. Deal with it. Alarm bells should go off in your head when someone claims to cure cancer, multiple sceloris, etc. Without the radiation you would be dead
Charm

For OCF members who still have rationality, here is the Quack Watch expose of Dr. Nieper
Nieper fraud
I know in the past that Brian and Gary have tried to reason with other posters about the need for scientific proof before you can post on OCF about a "cure" and it has had no effect on the posters. I just worry that some new poster will fall victim to the latest version of this fraud.
charm

[quote=fogelbergfan]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. [/quote]

Here is my original thread and as you can clearly see my cure was the direct result of the "combination" of radiation AND Dr Neipers treatment..I've NEVER claimed anywhere on some "secret German cure" anywhere on this forum as you say.This forum is to share information from our experiences and issues with oral cancer. I'm sharing my experience and anyone can decide what,if any,information can be useful to them.I have nothing to gain by sharing my experience with Dr Neiper's treatment given to me 28 years ago.Just like any and all treatments,people will benefit in different ways to different degrees.I was fortunately one of those that benefitted significantly.That's one of the reasons I ask if anyone knew of ANYTHING that could improve issues associated with fibrosis. Someone may know of something and could share it with the rest of us and someone may benefit to some degree.Your accusatory tone Charm is VERY unfriendly,uncivil, and unnecessary.

OK lets play nice in the sand.

Remember we are all here to try and do our best to help each other so I think we have said enough.

I agree with David, let's not get overly emotional about this.

I went to the link that Charm posted, and read the information with great interest. A lot of it is not that different from the information found in the book "Anticancer - A New Way of life" by David Servan-Schreiber MD. This book was recommended to me by one of my caregivers at MD Anderson, after he lectured there, and my husband and I have read it cover to cover. It's been mentioned here before.

So, while I admit that some of this doctor's methods and theories were not evidence-based, many don't seem that far-fetched...

I know of noone that ever wnet to him but you Fogel nor have I heard anything good. I have to agree with Charm on this one.