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I’m 2 months post rad and generally doing well. My speech has gotten worse and my eating is terrible. I have to dig in my mouth to loosen food. When can I expect to eat normally?


Laurie A Lichter
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The best answer is, it depends. Treatment type and duration, severity of cancer etc. Give yourself some time and grace and do the best you can. The more liquid or puréed diet the better. The important focus is on the strengthening the ability to swallow. Keep protein amounts high. It is frustrating as those of us who gone through this can attest.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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Hi Laurie,

Glad to hear overall things are well. As James mentioned, this depends on many things. I am over 3 years post radiation and have notice my speech varies day to day and even morning to night. Some days it seems clearer than others. I think it depends on many things - what i ate, drank, tongue and swallowing exercises, hydration, etc. I still have to dig some food items out occasionally. If I am in public, i use a napkin to cover my mouth. I also find myself doing all kinds of weird jaw gyrations as i eat trying work stuff loose. I have also noticed my saliva production is not consistent and has an effect on my speech and ability to process some foods.

Also, what was involved in your surgery? I noticed a much bigger challenge with eating and speech after surgery but had half my tongue replaced.


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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I had a hemiglossectomy, so half of tongue replaced with a skin graft


Laurie A Lichter
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Laurie,

Thanks, sounds like we had a similar process.

On speech and eating, I noticed significant improvement between surgery and radiation. Then, radiation put me back a ways. After surgery, I noticed improvement nearly daily. But, after radiation, I learned I had to judge my improvement in weeks and months.

Over three years out and I am not back to normal speech or normal eating but I can eat most anything not too spicy and everyone can understand me. Alcohol tastes terrible except for a heavy stout beer which I save for special occasions. My biggest challenge is conversations while eating such as a meal out with friends or a party with food. I never realized before how often we all speak with food in our mouths at these types of settings. I am very hard to understand if I try to speak with some food in my mouth. I have noticed that foods still slowly improve. Suddenly, I will be able to eat something that 2-3 months earlier, I could not (too dry, too spicy, etc).

People would tell me my speech was improving but I didn't really notice probably because I was always hearing myself. So, I would tape myself reading something and go back and listen to it a month later. Then, the improvement was obvious to me. Maybe try that?

Keep us updated. Hope you have a wonderful Thanksgiving.

Best,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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It takes time and everyone is different. For me, I could eat fairly normally most things after the first year. Saliva continued to slowly improve for several years. Biggest problem ongoing is food like rice getting stuck going down because of thickened mucosa. Good luck, keep fighting, and give it time! Also use a waterpic when able as the food tends to hang around in mouth due to lack of saliva….that will be life long.

Last edited by KevinBach; 11-24-2023 06:17 AM.

Surgery 8/08
Rt tonsil and 1 lymph node
SCC, HPV+, Stage IV
Radical neck dissection
Radiation 35x
PEG installed
10/21 Two teeth extracted, Pento protocol
11/21 Jaw broke. Osteoradionecrosis
1/22: Jaw repair, 3d printed plate and bone graft (full flap recommended and rejected)
08/23: Ear canal erosion, bone exposed. Restarting Pento…

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