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#19076 11-30-2005 12:43 PM
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I'm a one year tongue cancer survivor. Squamos cell carcinoma at the base of my tongue on the left side. I was diagnosed as stage IV. Had the whole experience, surgery, chemo,and radiatation. Lost a good bit of my taste,lost teeth during the surgery. I have difficult speech now, and I'm still eating soft food (Yuck). But really, I'm just happy to be alive. Happy to say that my most recent PET scan came back clean.


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19077 11-30-2005 01:48 PM
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Hey, J., Hope you will keep posting! Your recovery sounds alot like my husband's, so it's good to know you are out there. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#19078 11-30-2005 02:04 PM
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Jam,

I'm glad I found this site. One of the things that amazed me and my family is how people like me "fly under the radar". In that I mean I never imagined in my wildest dreams how many people are effected by cancer. I've had the privilige of meeting some of nicest people that I've ever met in my life through the course of my treatments.

John

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19079 11-30-2005 03:55 PM
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John, have they told you when you might be able to get new teeth? My John wants that so much? Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#19080 11-30-2005 05:02 PM
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John - I can echo your sentiment about meeting wonderful people - my experience is like yours. Perhaps it is the reality of cancer that sweeps away pretentiousness, and gets us down to the real us. Whatever it is, it sure feels good.

The food thing is a long term concern for me. All my teeth were pulled before rad. The ray gun pretty much killed my swallow, so I am still living by my peg tube - over two years out of tx. Getting dentures to fit well has been a challenge. The radiation is so hard on the jaw tissues that we cannot risk even minor abrasions in there - little injuries can become huge ones in a hurry.

The overall healing is slow, but it does continue and its a thrill to get the tiniest pieces of function back. Food may never be as it was before, but it is exciting to find new things to swallow! Keep those clean PET scans coming. They beat pizza any time. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#19081 11-30-2005 05:47 PM
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Hi j. Congratulations on your successful recovery. I too lost my teeth on the bottom, due to Jaw replacement on both sides. My speach was also effected. It will improve with time and pratice. I have found that when a word or sound gives me trouble in my prnounceation, I write it down and when I have time I pratice getting it right. The old saying pratice makes perfect applies. As far as eating soft foods aren't so bad. Just vary it as much as possible so it doesn't get boring. Yes, healing is a problem, but the Drs. the the Mayo Clinic in Scottsdale assure me that it can be done. Implants are a must and the procedure takes months, but I understand from other members that it is well worth the time. Best of luck and keep your positive attitude. Happy Holidays.

Hacklene


Hacklene
#19082 12-01-2005 02:18 AM
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I met with an oral surgeon yesterday. I will go into the operating room after the first of the year to have some dental work done and a bridge made. My real issue is that I just can't open my mouth. I had a lot more range of motion prior to my radiation. My ENT doctor and the radiation oncologist both tell me that the radiation just did to much damage to the left side of my jaw. I have very limited range of motion. I guess and I hate to say this, but I should fell lucky to not have a feeding tube. I just have to eat "soft" food. I've become quite the Chef. I experiment with a lot of different foods. I beleive that my taste has come back as far as it's going to, which leaves a lot to be desired. I really don't mind. As far as nutrition goes, I'm healthier now than I've ever been in my life. There is a silver lining to all things. Good to meet with all of you. I wish you all the best.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19083 12-01-2005 06:02 AM
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John - have you read the pages on the site about trismus? There are exercises that you can do and a device (also a tongue blade alternative) that can help you streach the muscles out over a period of time. I was told to do these from the begining day of treament till 6 months afterwards every day, and my results are pretty good.....people even tell me I have a big mouth (guess that dosen't exactly man the same thing!)


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#19084 12-01-2005 09:17 AM
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Brian,

I have a thera-bite. Doesn't do much good. I've done exercises that my speech therapist gave me. Nothing seemed to help. I've even pried my mouth open with tongue depressors. I'll look up the information that you suggested on trismus. I had greater range of motion prior to radiation. Thanks for the advice. I appreciate any insight that I receive.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#19085 12-01-2005 09:47 AM
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Well you have the device i was refering to. The trick that doctors tell patients is to do it right from day one of treatment. Too many of them only mention it in passing and do not weekly check your range of motion to confirm you are not slacking off during treatment. Scar tissue forms in the muscles during the radiation process, between the long fibres of the muscle. The trick is to catch this early so that it never has a chance to become so thick that it dominates the movement of the muscle. Doing this after treatment dosen't usually have great results, but will only help a little. By then you are asking too much of the muscles to overcome this non elastic material within them. Sorry, thought I had an easy fix to your problem.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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