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#201605 11-18-2022 05:41 AM
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Hello,

I just joined the group and am glad to have access to information from those who have experienced oral cancer surgery and treatment. I had surgery in Feb. 2022 to remove a small cancerous portion of my tongue and 26 lymph nodes from my neck (four were cancerous). This was followed by 66 Gray over 30 radiation treatments which concluded in late April. Based on the few posts I have already read from other survivors, I feel very fortunate and think I'm recovering well. However, I continue to be frustrated by an altered sense of taste which has limited my appetite and led to a weight loss of about 35 pounds. I have always been on the heavy side, so the weight loss probably isn't a bad thing. I'm looking for feedback to my thinking that food should be tasting good by now.

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Hi everyone. This is my first post. First of all - thank you to all that write here. It is very valuable to people going through it now. My mother has had her 10th radiation. Her taste is altered now. If anyone can reply - does the taste ever normalize?

Last edited by Goran; 11-20-2022 05:24 AM.

Hope. Love. Endurance.
Goran #201607 11-20-2022 11:53 AM
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Hello Goran
I had 30 radiations 3 years ago my taste got somewhat normal after almost a year I still have problems with taste of some foods but it's almost normal now.Everyone is different but everyday it will get better hard part for her is getting through all her radiation,good luck.

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I had cancer on the base of my tongue. I had chemo and radiation, so my case may be different than yours. I just looked at my notes and it was 15 months after the end of treatment when all food tasted good. I remember that my taste for sweet things was the first to go and the last to return. Later in my recovery I was more interested in savory dishes like Teriyaki Chicken from Panda Express and BBQ from a local steakhouse. At that time I also started watching Pati's Mexican Table on TV. She is always happy and excited and good at describing food and making it sound delicious. I even went online for her recipes and tried to cook some of her dishes. Imagine what would taste good and try to find it or make it. You mentioned that your taste buds seem altered, so you may need to alter your diet and try some new things. If you can't think of anything or don't feel like cooking, maybe go check out a buffet restaurant and sample everything!

TucsonCarl #201611 11-22-2022 11:40 AM
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Hi all,

I had surgery 4/1/20 (tongue flap and neck dissection/nodes removed) and finished 60 Gy of radiation 7/8/20. My tastes were pretty jacked up for about 3-6 months after rads. The last 3 weeks and month after I finished rads, I could only eat a few very simple things and used a blender for a lot of it. Slowly, month by month, I noticed I was able to add something back into my diet (Pizza - YAY!). Oddly, for me, sweets never really left. I had the right side of my tongue removed. Maybe that plays a roll?

Now I am coming up on 2-1/2 years and most flavors are back. The one thing I still have to be careful of is spicy food. I can maybe pull of a 2 or 3 spice level on a 0-10 scale. Ketchup used to be really hard for me and I still have to mix it with some mayo or similar or it bites back. Alcohol tastes horrible but I only miss the occasional glass of wine with my wife on a special occasion.

Someone above said it, everyone recovers different. I have heard about 3 years for flavors to regulate. Based on my experience so far, I would agree.

Wishing you all the best and more flavors as you approach the holiday season!

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
Nels #201636 11-30-2022 01:13 PM
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Thank you so so much! To all of you for your replies! They really mean a lot! (and to the good people that made this forum)

My mother's taste is pretty much gone but she manages to eat well these days. We had a crisis 4-5 days, possibly a small stomach virus as well. Mom was silent and without appetite.

She pushed through, and the appetite somehow returned.

She relies heavily on butter, oatmeal, and cookies with milk (and butter), and a dish called "Ceskek" we found, made from chicken and barley (pressure cooker - 1 whole chicken and 1/2kg barley. Slow-cook, turns to gray mush after a few hours. Bones come to surface, easily removed. Freese in boxes and heat up with butter). Prosure too.

After initially losing 3 kg during the second week of radiation, she gained back 1.5kg in the last 7 days.

But - one thing gets better, another worse.

The new symptom is a hoarse voice like after a cold. It happened today, I presume it's radiation related since a part of her neck is also getting the treatment. I will try to call my mother's oncologist tomorrow and ask. It's a problem since my mother telephones a lot these days. That is her substitute for socializing.

All the best to you lovely and brave people on this forum! Once more thank you!

If any of you has experience with the hoarse voice, please let know.

Last edited by Goran; 11-30-2022 01:15 PM.

Hope. Love. Endurance.

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