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#24054 08-14-2007 11:10 AM
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I wish I had found this Forum 2 Years ago which is about the time I was first diagnosed with Stage IV SCC on left tonsil. Completed treatments in December 05 and declared cancer free in March 06 (Hope to stay that way). I am still trying to overcome some of the side effects from the treatment and hope to get some new ideas from this site.

Biggest problems are I can't swallow and severe Trismus. I have been receiving speech therapy w/Vitalstem which has shown some improvement. For the trismus I use a device called a Therabite which helped a lot in the beginning but has not shown any improvement in several months.

Please conact me if there are any questions or ideas that you may have for me or from me.

Steve
Mississippi


Dx 7/21/05, Stage IV SCC L.Tonsil T3N2bM0, Tx 2-Cyc Cysplatin+5FU then 3-Cyc Cysplatin concurrent w/38 IMRT, Tx complete 12/9/05. Told cancer free 3/21/06
#24055 08-14-2007 11:39 AM
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Hi Steve,

OK, here is one Idea for swallowing... Have you had your Throat Dilated?? This is where they will stretch the esophagus. It sure has helped me and I learned it here on OCF. I have had it done 2 times. I am now at 1 1/2 years from treatment. Real simple procedure.

Take care,
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#24056 08-15-2007 04:26 AM
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Diane

Thanks for the tip. However my ENT doctor doesn't think a dilatation would work in my case as most of my problem seems to be that I don't get enough movement or lift from my larynx which is what triggers your esophagus to open. Speech therepist has given me some exercises to help loosen it up but I have not seen much change.

Steve


Dx 7/21/05, Stage IV SCC L.Tonsil T3N2bM0, Tx 2-Cyc Cysplatin+5FU then 3-Cyc Cysplatin concurrent w/38 IMRT, Tx complete 12/9/05. Told cancer free 3/21/06
#24057 08-15-2007 01:48 PM
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Posts: 583
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Steve,

I know that there are others here that have had swallowing problems.

I am sure someone will answer soon. You can also try a search and see what you come up with. Mean while keep up the exercises.

Take care, and welcome to OCF
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#24058 08-26-2007 08:42 AM
Joined: Jun 2007
Posts: 510
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Steve: Please post again and let us know whether or not you were able to find the information you were seeking. If not, I'm sure there are those here who will try to help you further.

Know that you are in our thoughts and prayers..


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#24059 08-28-2007 03:34 PM
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Hi Steve;

Welcome to the forum. Check my signature below and you'll see we have lots in common, except you beat me by a couple months with the cancer free status. Good on ya' !

I just started the Therabite exactly 4 weeks ago to the day. I could open only 15mm at the start (unassisted) and that has increased to 22mm now, and 32mm (assisted with the device). Every time I reach a new plateau of discomfort, I can feel the muscles wanting to let go even further. Once comfortable at the new level, I go for a new increase and the cycle repeats itself. I would really like to hear how you went about its use and what successes you had. You mentioned you hadn't gained much recently - could you expand on that topic with some more detail. Maybe we could help each other somehow.

Looks like you escaped going under the knife in your treatment. I presume the rad and chemo was enough to eliminate any neck tumours or lymph node trouble. You were very fortunate if that is the case, as I am still looking for the missing half of my neck!

Are your saliva glands active at all, or does xerostomina accompany your trismus condition as well?

If you'd rather email than post a reply, send it to: John Hallier - [email protected]

You should find this website very informative and helpful, and your posts will be well received too.

All the best;
JT2


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...
#24060 08-28-2007 03:34 PM
Joined: May 2007
Posts: 39
JT2 Offline
Contributing Member (25+ posts)
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Joined: May 2007
Posts: 39
Hi Steve;

Welcome to the forum. Check my signature below and you'll see we have lots in common, except you beat me by a couple months with the cancer free status. Good on ya' !

I just started the Therabite exactly 4 weeks ago to the day. I could open only 15mm at the start (unassisted) and that has increased to 22mm now, and 32mm (assisted with the device). Every time I reach a new plateau of discomfort, I can feel the muscles wanting to let go even further. Once comfortable at the new level, I go for a new increase and the cycle repeats itself. I would really like to hear how you went about its use and what successes you had. You mentioned you hadn't gained much recently - could you expand on that topic with some more detail. Maybe we could help each other somehow.

Looks like you escaped going under the knife in your treatment. I presume the rad and chemo was enough to eliminate any neck tumours or lymph node trouble. You were very fortunate if that is the case, as I am still looking for the missing half of my neck!

Are your saliva glands active at all, or does xerostomina accompany your trismus condition as well?

If you'd rather email than post a reply, send it to: John Hallier - [email protected]

You should find this website very informative and helpful, and your posts will be well received too.

All the best;
JT2


Age 55 at Dx,smoker 30 yrs ago, drinker 8 yrs ago; Stage 4 Squamous cell carcenoma T4a N3; 35 radiation tx, 3 chemo w/ Cisplatin, radical neck dissection,40 hyperbaric dives pre-surgery. Clinical remission since May 2006; Update: declared cancer free July 16, 2010! Miracles can happen...

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