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#21985 01-27-2007 06:23 PM
Joined: Jul 2006
Posts: 446
"OCF Canuck"
Platinum Member (300+ posts)
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"OCF Canuck"
Platinum Member (300+ posts)

Joined: Jul 2006
Posts: 446
I didn't have a tube either, and to be honest the thought of having one put in during treatment was a strong motivator for me to keep swallowing.

I had one post surgery for two weeks, and did NOT want to go there again. The deal was that as long as I did not lose more than 7% of my body weight, I could avoid the tube.

I was skinny to start with, even skinnier when I finished, but I only lost 5.5lbs during 30 IMRT treatments. It was brutal at times, but I made it through without the tube. I'm glad I did, too. I have no trouble with swallowing now, and have almost all of my sense of taste back as well.
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
#21986 01-27-2007 08:46 PM
Joined: Nov 2005
Posts: 1,128
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Nov 2005
Posts: 1,128
Reading between the lines in posts in other threads, for some folks, the tube apparently becomes a surrogate for the cancer process itself, but a surrogate that can be fought every day and beaten (getting by without it).

In my case, I had the tube and was glad I did, altho I wish they'd told me more about swallowing and trismus (I've gone back and talked to the nurses about it and they took good notes for future folks).

Also, in my case I was taking Amifostine (Ethiol) and they told me up front that if I couldn't keep my weight up, they couldn't keep giving me the Amifostine -- I frankly don't think I could have done that without the tube (If one barfs, the nourishment value is zero and you then don't know how much more to take to replace it, plus it's hard to choke more down if you've just barfed...).

I kept on swallowing my daily meds and took all my water by mouth, so I was swallowing, just not the liquid nourishment. Good thing about the tube is you don't have to taste any of the nourishment so the flavors didn't matter <g>.

Unfortunately, I became allergic about halfway thru my XRT, so I had to discontinue it anyway. I'm getting some saliva back (one year out) and don't know if the Amifostine has helped that or not.

I rigged an easy-disconnect neck holder for my tube so I didn't have to tape or up or anything like that.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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