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#201802 03-15-2023 11:31 AM
Joined: Mar 2023
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Tlg Offline OP
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Joined: Mar 2023
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My daughter had surgery 9/22 for tongue cancer that had metastasized to her lymphnodes in her neck. Approximately half of her tongue was removed and replaced with flap from her forearm. This was followed by 6 weeks of radiation and chemotherapy. She had a feeding tube placed about halfway through her treatment. Her difficulty now is that nearly everything she tries to eat tastes bad which makes it difficult to continue. She has found that Root beer and blue Powerade taste good. She finished treatment early January 2023 and had hoped to be taking the majority of her nutrition by mouth at this point. She is feeling very down and frustrated. Does anyone have any advice or thoughts on this?

Tlg #201803 03-16-2023 07:55 AM
Joined: Jun 2021
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Pretty common for radiation to mess up taste buds. I remember getting Pizza and having a tough choice, which tastes better, the pizza or the box!!! Taste buds should return, but maybe not for a while. In the mean time, you just have to experiment to find what tastes best. I have also read that brushing your toung while brushing your teeth helps. It is just going to be a long trail back!


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
Tlg #201804 03-16-2023 02:08 PM
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Hi Tlg,

I am so sorry to hear of your daughter's challenges. I went through very similar surgery and treatment about three years ago.

Radiation destroys your taste buds and it takes years for them to recover. A couple weeks after radiation, my flavors were still completely jacked up and I was down to about 15 things that I could stomach. Some examples - green beans, scrambled eggs, pancakes, french toast, vanilla pudding/ice cream, avocado, noodle soup, think super simple! Plus, try blending things. A couple months after radiation, I could slowly start adding fruit (the ones with less citrus like a banana blended into protien drink, with vanilla ice cream and an avocado) and other simple foods (careful of anything spicy!). Ketchup was hard, pepper, salad dressings, etc. After three years, I can eat most anything but still have to avoid spicy stuff and alcohol (tastes like poison). And, I still see some improvements such as I can eat a little ketchup on a french fry straight up now. I have heard this flattens out after about 3 years. So, I can offer you hope. I now eat out at any restaurant and I am just cautious about the spicier stuff.

I have also had lots of dental work (crowns and root canals) done. I had lots of fillings before my treatment so this is most likely just a result of rads accelerating the damage.

Happy to help answer any other questions and thanks for reaching out. This forum has a been a huge help to me as i recovered and I hope it can be the same for you and your daughter.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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