#15887 07-05-2004 11:45 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 146 | Hi Cowie,
I had a total glossectomy so I can relate to speaking and eating issues first hand. I also had a lot of saliva/drool in the beginning and always walked around with a box of kleenex practically hanging around my neck. The saliva was hard to contain when trying to speak but I'm happy to say that that subsided drastically. Give it a little time, it will come. I started speech therapy in April and will be "graduating" next Monday (it will be my last session). So I had about 12-14 sessions with my therapist. With a good therapist and a lot of work, I'm happy with my speech. It's not perfect or what it use to be, but in my mind it's perfect compared to where I was 6 months ago. I had my peg tube removed on April 1st and just started eating "real" food in June supplemented with liquids nutrition. It's a lot of work and takes time, patience and determination but I'm eating at least one small meal a day (more on the weekends when I have more time). I'm still experimenting with what tastes best with the few tastebuds I have and what is the easiest to wash down with water, but the fact remains that I am doing it! This was a personal goal for me when I started treatments and I feel great that I've succeeded. Not ready to eat in public quite yet, but I'm confident that that, too, will come with time.
Sorry to ramble, just wanted to let you know my experience. Keep fighting the good fight and let me know how you're making out with speech therapy.
Hugs, Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#15888 07-06-2004 05:59 AM | Joined: Jul 2004 Posts: 16 Member | OP Member Joined: Jul 2004 Posts: 16 | nancy you give me hope i thank you so much iam sitting here writing and drinking ensure for the first time i have been drinking water and fruit juices also its good to hear that druel should subside how long each day did you go to speech therapy also tell me about your surgery did you have a flap taken from your arm also what kinds of foods do you eat other than liquids i want to get this peg tube out asap any tips on speaking eating or anything would be helpful thank you so much and thank god for this website you guys tend to bring me up when i feeling down thanks
30yr WM ,2003 dx oral squamous cell ca of tongue had lesion removed on lt side of tongue and 9 nodes 1 node pos. had 36 treat. rad therapy 2004 had lesion growing on lt base of tongue had partial glossectomy with skin flap taken from left arm
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#15889 07-06-2004 06:03 AM | Joined: Jul 2004 Posts: 16 Member | OP Member Joined: Jul 2004 Posts: 16 | ha guys another question i seem to have a gap from my new flap or tongue to my teeth it seems to collect saliva and cause me to druel can anybody relate ????
thanks again cowie
30yr WM ,2003 dx oral squamous cell ca of tongue had lesion removed on lt side of tongue and 9 nodes 1 node pos. had 36 treat. rad therapy 2004 had lesion growing on lt base of tongue had partial glossectomy with skin flap taken from left arm
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#15890 07-06-2004 09:01 AM | Joined: Jun 2004 Posts: 17 Member | Member Joined: Jun 2004 Posts: 17 | Hi Cowie
Welcome to the forum. I am new here too. You have found the right place ; ) Everyone on here is really great and supportive and wonderful.
Warmest Thoughts Sweety
Stage 1vb Metastatic Cervical Cancer. Metastatic squamous neck cancer. Currently having RT,Chemo. Tumor removed 07/04 Immune therapy.
WHERE THERE'S LIFE THERE'S HOPE.
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#15891 07-06-2004 09:48 AM | Joined: Jul 2004 Posts: 16 Member | OP Member Joined: Jul 2004 Posts: 16 | ha found this post on another board hope this helps somebody ...... ......Hello everyone, I just wanted to share a good bit of news in hopes it may help someone else. Last sept. 2003 I underwent surgery for squamis cell cancer of the tonsil region. The sugeron removed one half of my lest soft pallate and part of my lower jaw and back of tounge. I had a pectoral flap reconstruction of the throat using my left chest muscle. Followed by 35 radiation treatments.
All seems well and the healing continues. I feel great and eat about what I want, with water of course. Taste is back and even had my first steak last month. Now the problem I had. My speach!
I am back to work 100% as the project manager/estimator for a small but growing construction company. People had much difficulty understanding my on the phone. I went to a speech therapist who put me in touch with a Dr. Wee at Ohio State University Dental School. He fitted and constructed a prosthesis that fits like a partial in my mouth and it has made all the differance in the world. I love it. Although I don't quite sound the same It is much better. I am able to swallow better without the liquid coming out of my nose. What a diffence this has made.
I just want to share with anyone that my be experiencing the same that there is hope. This is only my second day with this and I feel so much better already. A real spirit picker-uper.
If anyone needs more info, let me know.
God bless all of you
Tony
30yr WM ,2003 dx oral squamous cell ca of tongue had lesion removed on lt side of tongue and 9 nodes 1 node pos. had 36 treat. rad therapy 2004 had lesion growing on lt base of tongue had partial glossectomy with skin flap taken from left arm
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#15892 07-06-2004 11:38 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 146 | Hi Cowie,
I had a total glossectomy and my "free flap" (as I think they call it) was taken from my stomach muscle. I don't know much about these flaps except that mine is sewn to the floor of my mouth so there's no "tongue" so to speak. I also seem to collect saliva in the area right behind my front teeth and I either spit it out or use a kleenex. Not very lady-like, but hey, it works! I've been experimenting will lots of different foods to see what works best and the best technique to try to get each bite down. I've been able to eat everything I've tried from scambled eggs, chicken, meatloaf, beans, pasta, etc., and find that the more sauce / gravy, the better (slides easier!). Of course some foods I can taste better than others and some textures of foods are easier to swallow than others. I also drink A LOT of water with each meal to wash down every bite. Holding the food on a fork while chewing it between my teeth helps to keep the food in one place in my mouth and breaks it up into even smaller pieces. The key for me is to eat very small bites so I don't choke when swallowing. As far as speech goes, I've come up with some of my own techniques for saying certain sounds although if I had to put those tips into words I'd be hard pressed. What I do find is that if there's a word I want to use which I know I can't pronounce clearly, I'll just substitute a different word - like instead of "gifts" (which is hard for me to pronounce), I'll use the word "presents." Anyway it gets the point across and my listener understands what I'm conveying.
Enough rambling - keep working hard on your speech and swallowing. It'll all come with time, patience, practice and determination.
Hugs, Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#15893 07-07-2004 03:09 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Nancy, I think you are awesome, I love your positive attitude...God Bless You! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#15894 07-08-2004 07:50 AM | Joined: Jul 2004 Posts: 16 Member | OP Member Joined: Jul 2004 Posts: 16 | tanks guys i made an appt with that dentist for my prothesis next thursday i hope this does something talk later
clint
30yr WM ,2003 dx oral squamous cell ca of tongue had lesion removed on lt side of tongue and 9 nodes 1 node pos. had 36 treat. rad therapy 2004 had lesion growing on lt base of tongue had partial glossectomy with skin flap taken from left arm
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