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Joined: May 2014
Posts: 17
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Joined: May 2014
Posts: 17
Hi Kazy, It looks like you are also more than a year out of treatment. I still have the same problems with the burning. Added protein powder & milk to my Boost. Scrambled eggs if not dry can work while drinking water which I can finally do without it burning. This is a plus because my saliva glands are shot. Oikos triple 0 Greek yogurt, vanilla with a little honey. Kozy shack rice pudding. One problem with a diet like this my cholesterol is now up. I think it will take awhile to get used to tastes and textures again. Having any problems opening mouth wide?


Surgical biopsy Jan.2014 diagnosed verrucas carcinoma, previously biopsied by oral surgeon in office diagnosed verrucas leukaplakia. Radiation 33 sessions 4 chemo. Jpeg March 2014, removed Dec 2014 when started drinking boost. Surgical biopsy Oct 2014 - Jan. 2015. no cancer
Joined: Oct 2015
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Joined: Oct 2015
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Hi Kazy, II hope I am not talking out of school, but I know of a brave young person whose name and username I will not divulge who had a total Glossectomy. This person was 33 when tongue cancer was detected. This person has successfully fought hard to regain a normal life as possible. This person is working, is a parent, and has trained hard to eat as well as possible with no operable tongue. This person has a kick-ass attitude who has overcome so much at such a young age. This person has helped and supported many, many people in this forum including myself for which I will always be grateful. I had similar surgery nearly 12 years ago but I was 68 when diagnosed. I am truly sorry you are so young to have gone through this. I was on a peg tube from 04 thru 07. I was able to swallow liquids from 07 thru 13. Got aspiration pneumonia in Feb 14. Should have gotten a barium swallow test (MBS) when I started losing weight a year earlier. I strongly advise anyone who hs compromised swallowing to obtain a MBS when any symptoms such as weight loss and shortness of breath occur. The other folks in this post have given good helpful advice. I pray and hope for you to have a great life and don't give up. Things do get better!
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Jim Haucke
Tongue ca dx 9/03. Two surgeries 11/03 and near total Glossectomy 2/04. 36 radiation treatments 3/04 thru 5/04. Peg from 2/04 to 10/07. taste buds intact with liquid oral feeding with flavored nutritional drink, nutren 2.0. Wt loss 2013 with pneumonia 2/14. Peg inserted. Hope to get swallow therapy, get a MBS, and if passed, carefully resume oral feeding.

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