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Eating after Tongue Cancer Treatment

PrimaryX3
Posts: 15
Joined: Jan 2010

I was diagnosed with stage 4 tongue cancer with no mestaseses in November of 2008. My oncologist and his team gave me 2 options: have 3/4 of my tongue removed followed by radiation or have intense chemotherapy and radiation. I chose the second option and as of May, 2009 I am cancer free. Before my treatment I had trouble eating and eventually had a feeding tube inserted. The tube came out a few weeks ago after 9 months of using it. I have lost 105 pounds since my diagnosis - fortunately I had lots of extra weight to start off with! My chemotheraphy and radiation ended last April but my mouth is still extremely dry and I can only eat if I grind my food and make it very moist by adding broth or gravy. I am unable to eat any kind of carb. My question is - will I ever be able to eat normally? My doctors seem divided on the answer so I hope you can help me. Thanks in advance.
Theresa Walles

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

Welcome to CSN I am glad to have you here with us.

I am NPC but the affects are almost the same, the dry mouth is here to stay but there are different things you can try to help keep it moist, during eating the best thing I found so far is just water. The affects of rad & chemo are different on everyone, some take longer to recover then others, and how we turn out is what we look at as the new normal. I don’t understand the problem about not being able to eat carb’s by now you should be able to taste and eat anything.

I am sure that someone here will be able to help you a lot more then I can so for now thanks for being here and please plan to stay.

God bless

PrimaryX3
Posts: 15
Joined: Jan 2010

Hondo,
I so appreciate your welcoming note! I wanted to come to this site earlier but was so ill during my treatment that I did little more than sleep. I was admitted to the hospital 3 times due to complications of chemotherapy. I had breast cancer 6 years ago and had a kidney removed this past September due to another cancer and they were each a walk in the park next to this tongue thing!
I also am never far from a glass or bottle of water! I can live this way if the need be but I'd love to enjoy a corn muffin once in awhile!
Thank you again for your response and support. I know I will be a frequent visitor to this site.
I must ask, what is NPC? I will blame chemo-brain for not being able to figure it out!
May God bless you too.
Theresa

MarineE5
Posts: 762
Joined: Dec 2005

Theresa,

I'm glad to hear that you are able to eat orally and not have to use the Feeding Tube any longer.

I had 1/3 of my tongue removed and am able to eat also. The problem that you have with the dry mouth may stay with you unfortunately as I am now just over 5 years out from my last radiation treatment. Some people get their saliva back and many don't. I am one of those that fall in the don't list it seems. It is all good though as I eat pasta with allot of sauce on it for carb's. I always have a glass of water handy along with whatever else I want to drink along with my meal.

I take small bites and make sure I chew alittle extra long and each mouth full gets a sip of water/ fluid with it. I had 4 choking episodes in my first year after treatment, luckily my son was there to help me. So I learned to eat slower. I don't eat anything stringy. String Beans, steak, etc. Ground up meat in sauces is part of my source of protein.Yogurt and breakfast drinks help.

My Best to You and Everyone Here

PrimaryX3
Posts: 15
Joined: Jan 2010

I was very lucky in that I was able to eat to some degree during my entire treatment. The problem was I didn't always have the strength or will to eat and when I did I could only eat tiny amounts. I am taking pilocarpine 3 times a day for mouth dryness. It has helped a small amount. I can live with the way things are now but it would be nice to get rid of the dryness.
Congrats on doing so well for so long after having your tongue surgery. It is an inspiration to someone only 9 months away from my last radiation treatment.
Take care and thank you so much for your response.
Theresa

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