Hello Goodpn,

Welcome to OCF and I am sorry to hear of your challenges. My experience was the tongue took a long time, many months, to come down to a manageable size. It was weeks before I could even touch my teeth back together. Everyone is different but I was able to get off my nasal feeding tube before radiation. But, eating was hard. I ate soft foods, like you have listed, for months and it would take me a long time to just manipulate and chew a bite of anything with structure. Radiation added a whole new challenge - some swelling, sores and funky flavors. Flavors were the hardest. By the end of rads, most foods tasted horrible. I focused hard on the ones that I could still stomach. Some tasted fairly normal like scrambled eggs and green beans (say whaaat? I know, green beans!). Sounds like you have a vitamix (or similar). I would blend all kinds of simple stuff together in there. Found adding avocados to almost anything, like vanilla ice cream, worked in the blender to add some healthier calories. Flavors come back after rads over the months and years. I am five years out now and still notice some improvement in spice levels. Spicy food ended up being the hardest/longest to come back. Today I order the least spiciest on the menu and still sometimes cannot manage it. Liquids were a different challenge. I just kept practicing in small sips all the time. Eventually, I learned how to drink fairly well. But, I still can not do a milkshake through a straw. I can do water or liquid through a straw now. That took awhile.

Upshot, I had to learn to be much more patient with myself than ever before in my life from an injury/physical challenge. I suggest journaling - both written and video. I would get frustrated thinking why hadn't I come further with my speech? food?. Then, I would go to my journal, watch an old video of myself speaking, etc. and realize I had improved more than I thought.

Please keep us up to date on your progress.

Blessings and peace,
Nels

My mouth feels like I have a marshmallow stuck in my right cheek. The tongue is so large that I can’t get my dentures in. I am 2 months out from surgery and will start radiation in 2 weeks. My surgeon told me at the one month post surgery appointment that my tongue swelling would gone down. And then last week he wasn’t as optimistic. I can only say a few words that people can understand and my eating is limited to applesauce, pudding, and mashed potatoes. When I try to drink liquids it comes back up through my nostrils. I’ve been on a PEG tube for 2 months. I would be interested in how you overcame your obstacles and developed exercises for chewing and swallowing. Also, I’d like to hear from others who have a tongue that is too large.

I'm so sorry you both are going through that. Bleeding is so scary. It sounds oozing is fairly common, but my mom had significant and steady bleeding sometimes for 20 or 30 minutes, usually overnight. She used an oral solution called Aminocaproic acid 0.25 gm/ml and it really helped. Its prescription so maybe see if the Healthcare team would consider this as an option. I hope relief comes very soon.
Mandy

Has anyone else been diagnosed with Stercoral Colitis? My body has been put through the wringer for 21 years. System failure and organ damage. This is the latest and I’m afraid it will be the end of me.

Hello, my mom is a 67 y/o female with a rapidly growing left SCC tongue tumor that is pd-L1 + and > 4cm. From the PET, they see 1 likely node involved, but the tumor crosses the midline of her tongue so they would treat both sides. She also has other health issues including past significant arterial complete blockages that have been repaired at Cleveland Clinic 2 years ago. She has kidney disease that is moderate related to this.

We've had 2 major medical centers in Chicago, IL review her case. 1 is suggesting immunotherapy then surgery, then radiation and likely chemo. The second, University of Chicago, is suggesting chemotherapy and immunotherapy immediately, then likely surgery + radiation. I've been looking up the trials and there seems to be good support for immunotherapy prior to surgery, but the chemo before therapy seems to be reserved for inoperable tumors or recurrent cancer, neither of which is her case. U of C is a pioneer in tongue sparing approaches but I know its not the typical care. Im her advocate and ultimately she will look to me to help her decide. I'm so scared to make the wrong choice. Has anyone had chemo and immunotherapy as a neoadjuvant therapy, then a subtotal glossectomy and radiation? Or aware of any data to support it? Thank you.