what now? getting off the feeding tube.

Adrien

My boyfriend was diagnosed with throat cancer in Sept. He had three chemos and 40 radiation treatments. The cancer is gone (Thank God!!) but what now? His taste is back (for the most part)but he can't swallow. His salivary glands are shot so his mouth is always dry and foamy. He aspirates when he tries to drink or eat. Once they are done treating the cancer it seems like the doctors are done and offer no advise or help. I can not imagine that there is nothing else that can be done. How can we treat his aspiration and get him off of his feeding tube?
Any help would be greatly appreciated!!

MEldridge

Be Patient. It takes awhile. I was dianosed with throat cancer (squamous cell carcinoma) early last year.I finished my radiation treatments on june 21 2004. I only have about 75% of my taste back and that may be the best it gets. I had my feeding tube removed in September and I still have trouble swallowing. The Oncologist tells me that sometimes it takes up to two years to recover from the effects of radiation. You never totally shake them all completely, but I get a little better every day. Tell your boyfriend not to be over-anxious because if he is, he sets himself up for disappointment. I hope this helps. If you would like to talk more, you can email me.

apolinar

Dear, Adrien
I am a 67 year old male who had surgery and radiation almost 5 years ago thank god I have been OK, I was on a feeding tube for 6 months, first in the nostrils then had it planted in my belly after steping on it and yanking it out of my nose. any way I was sent to a therapist and she workred with me and said that some people just never get the hang of eating again and remain on feeding tubes, well that did it for me and on my way home I went tp burger king and bought me a burger, I took it home and forced my self to learn to swallow, after a little work I did it and did really good. The doctor sent me to a X-ray lab where a doctor hooked me up to an X-ray and showed exactly how my throat was working as i swollowed different types of food. It took time but I am doing real fine. I was to far gone to have chemo or radiation instead I went through a surgery that took eleven and a half hours. Dont let him give up it is a tough fight but you have to make yourself know that you are going to winn and kick it thre butt.
good luck, and keep the Faith.
from A fellow survivor,
POLO

LucyVance

Hang in there.
Hi - so sorry to hear about the slow transition. I agree though, that patience is the way to go. You might try transitioning to real food if he is on canned nutrition. I share some of my recipes and ideas at lucysrealfood.com. Also, when he does transition sometimes thin liquids are the biggest problem. You might try making banana and milk or soymilk smoothies. I use three bananas in a 48 oz container, just cover the bananas with liquid and then blend. It makes a nice consistency that is easier to swallow. Wishing you all the best - Lucy

MLC53

Sometimes we have side effects from the radiation that require us to keep our peg tubes in longer than we'd like. Everyone is different and have their tubes removed at different times. I have been out of treatments for 14 months and still have my peg tube. I don't use it much now. I have gradually been learning how to eat again but it has been a slow process. I had a problem with a severe stricture of my esophagus caused by the radiation which was making me choke on even the smallest amount of food. I've had to have over 10 esophageal dilations and had to use the peg tube for a few days after each dilation because I was so sore that I couldn't swallow. My GI doctor said that I should be able to get the tube out soon because my esophagus looks like it will finally stay open enough for me to eat better.

If your boyfriend is having problems with swallowing, I would insist that his doctor order a modified barium swallow (aka swallowing test) and then possibly physical therapy to help him learn to swallow again. I had both the swallowing test and a regular barium swallow. That's how they found the stricture. When I was just learning how to swallow again, I would sip on water, clear broths and juices...just small sips so that I wouldn't aspirate or choke. I did it often every day until my swallowing muscles got stronger. As far as his peg tube goes, tell your boyfriend to just take one day at a time. I was thankful for the tube because it helped me to sustain my nutrition and gave me the proper nutrients in order to heal faster and maintain my weight. And, even though I had the tube, I would still practice my eating. Gradually your boyfriend should get better at eating and begin to rely on the tube less and less. It just takes a lot of time and patience. Hope this helps and good luck to both of you.