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Hello Everyone - This is my first post to this site and I hope to get some help.I had tonque cancer in 1982 and went to a BRILLIANT Dr.Hans Neiper in Hanover,Germany.His treatment along with the "shock and awe" radiation campaign cured me of cancer.The problem I'm having now is from the scar tissue in my throat area that makes swallowing difficult.I've had several throat stretching procedures done with limited success.My gastro doctor even ordered me a throat stretching medical device called a bougie that I ram down my throat each day.I'm looking for any other means to improve my condition. If you know of something,please email me.

Thanks,
John Burch
Austin,TX


32 Year Oral Cancer Survivor.CURED!!Right neck dissection.5000 rads plus radium needle implants in the tongue.Also had alternative treatment in Germany from Dr. Hans Neiper in 1982.The combination of ALL the treatments cured me.
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Is this a "new" problem or did it develop over time? I would get a 2nd opinion to make sure all your bases are covered.
When my husband had the procedure done his doc told hilm 15-18mm are the magic numbers as to what she is aiming for when she does this procedure, My husband had 2 throat stretchings 2 weeks apart as she said leaving it too long the throat can go back to pervious size. Mind you that was his experiance and every one is different! Congrats on being a 25 year survivor!!!!! You are the 1st I have ever encountered ! Keep it up!


C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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Sammie - The problem developed over time....mainly the last 5 years.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. I'm just looking for something better if I can find it.


32 Year Oral Cancer Survivor.CURED!!Right neck dissection.5000 rads plus radium needle implants in the tongue.Also had alternative treatment in Germany from Dr. Hans Neiper in 1982.The combination of ALL the treatments cured me.
Joined: Apr 2005
Posts: 60
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Hmmm sounds painful! I would still go for a 2nd opinion, you wanted to see what else is out there no!? One thing I have learned from this forum, is no matter how much you may like your Doctors, this is your health and well being. Don't be afraid to explore other avenues with other doctors.

On a lighter note I would love to hear your story! Surviving "the beast" is a inspiring feat in itself. When you have time please tell us all about it!


C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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The procedure is not painful at all. It just makes your eyes tear up a little and gag a little.I've been to several different doctors and no one has a "fix"....this is just a Band-aid.I'm hoping that Brian Hill or anybody else on this site may know something that I don't know.Maybe a clinical trial new drug or procedure that would be helpful.


32 Year Oral Cancer Survivor.CURED!!Right neck dissection.5000 rads plus radium needle implants in the tongue.Also had alternative treatment in Germany from Dr. Hans Neiper in 1982.The combination of ALL the treatments cured me.
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In 1982 when I was 27 I was diagnosed with tongue cancer and was told that my tongue would have to be removed because it was an aggressive growing tumor.I went to see a brilliant doctor (who has since passed away)Dr. Hans Neiper from Hanover,Germany.He had treated many people from around the world and was very successful considering the condition of the people he had seen.Much of his treatment used the bodies own immune system to fight the cancer.Even though he has since passed away,I believe his methods are still used there.I combined his treatment with radiation and was CURED.I am now having side affects from the radiation (details in another thread).The cost of my treatment was shockingly very low because they have some form of socialized medicine.I was in the hospital for 3 weeks and went thru several tests.Everything for my entire trip (not counting air fare)was $3300.Keep in mind that was 1982 dollars and the exchange rate was much better than today.I guess my point to everyone is there are other alternatives than what we have here and to NEVER,NEVER,NEVER give up hope.


32 Year Oral Cancer Survivor.CURED!!Right neck dissection.5000 rads plus radium needle implants in the tongue.Also had alternative treatment in Germany from Dr. Hans Neiper in 1982.The combination of ALL the treatments cured me.
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Im sorry, I wish I could help, but I dont have any advice to give about your problem.

Congrats on being cancer free for 25 years. That milestone is such an inspiration!!!!

I hope someone on here can give you some ideas.





Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Were you a smoker or a chew tobacco user?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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No I was not a smoker or chew tobacco.


32 Year Oral Cancer Survivor.CURED!!Right neck dissection.5000 rads plus radium needle implants in the tongue.Also had alternative treatment in Germany from Dr. Hans Neiper in 1982.The combination of ALL the treatments cured me.
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Did they tell you what might have caused your cancer and was it SCC?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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