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Marin Offline OP
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Hello, I am in my mid- thirties and was diagnosed with early stage SCC. I had half of my tongue resected to remove the tumor, and free flap surgery was performed to rebuild my tongue. I have been going through chemo and radiation with two weeks left.

I am currently eating all of my calories through my mouth in liquid form. I can eat some solid foods with some effort (moving the food with my finger) but cannot taste much at this stage in my treatments. I am curious if others have recommendations on how to reintroduce solid foods and what the timeline for eating may be like when radiation and chemo are done? Any tips on how to re-learn to eat? Thank you!


SCC on left side of tongue. Hemiglossectomy, leaving base of tongue intact but front half removed, free flap rebuild, neck dissection followed by chemo and radiation.
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After my initial treatments a long time ago I had about 18 years of eating like a normal person. Ultimately I lost my ability to swallow and even drink water or smoothies by mouth. The radiation over years had damaged the nerves that control all this, and I ended up on a PEG feeding tube full time. During the second half of treatment and for about 4 months afterwards I was also on a PEG tube which I transitioned off of gradually to eating normally, so while its been awhile, I remember the difficulty of the process, and what worked and what did not.

Even during treatment I was always able to swallow, it was just wildly painful. So I started losing a ton of weight, and they made be put in a PEG tube. I was lucky they did. Not getting good nutrition while you are going through all this can really slow down your healing, and also weaken your immune system making it easier to catch colds and the flu. In a Covid world you don't want that.

In the beginning only things that were very wet and even slippery were doable. I ate a ton of canned peaches in syrup right out of the fridge cold. They went down easy and the cold helped with the pain of swallowing. Eventually I transition to things like very wet scrambled eggs, very wet mashed potatoes, baby food (yes it worked and I got ribbed for it a lot) From there it was warm, not hot soups, mostly ones that didn't have any chunks of things in them. It took months but eventually most things went down easily, and life returned to normal for 18 years. Then it suddenly went backwards and that is not fixable. I also lost my speech about the same time and more.

I think it is worth trying to keep your swallowing active, it will make it easier to transition back to normal eating. That's even if it is just slippery cold peach slices. The issue of getting a bolus of food to the back of your mouth with your tongue is something that may limit this. If that's the case, then fruit and vegetable smoothies made in a Vitamix blender will be thing that you can get back to your oropharynx pretty easily, require no chewing, and can be highly nutritious. But this is very much a trial and error process, and everyone depending on where their treatments are occurring in their oral cavity is different. Since you are still in treatment, keep trying, but also keep your expectations in check. This area is really damaged, sore and not working right. That is going to take time to return to something close to normal that you don't have to consciously think about. B


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
1 member likes this: Marin

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