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#200069 04-19-2020 03:19 PM
Joined: Jan 2020
Posts: 19
Micki Offline OP
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Joined: Jan 2020
Posts: 19
Hi everyone!

Is it typical after rads for everything to taste burnt? How long does it last? My guy is trying soft foods and liquids but says it all tastes awful, like ash. He uses his peg tube for most all nutrition. All of this is so much harder then we thought it would be and I knew it would be horrible.

Stay safe please!

Micki

Micki #200072 04-20-2020 01:47 AM
Joined: Jun 2019
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"OCF across the pond"
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I didn't have an ash taste, but everything was salty. Rads affects the taste-buds and it takes time for them to recover. I'm nearly 6 months clear from rads and am still finding my taste changes on almost a daily basis. I keep trying foods though as it keeps me going and I love it when something tastes great, my mouth comes alive!


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Micki #200080 04-22-2020 04:39 AM
Joined: Aug 2019
Posts: 57
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I am also 6 months from final radiation treatments. Eating is far from normal due to : taste buds - all foods taste kind of bland; dry mouth makes many foods hard to swallow without water; throat muscles for swallowing still recovering; and due to continuing trismus (jaw pain) opening mouth wide and chewing are uncomfortable. Eating is still “a job”, not the normal pleasure I took for granted. Good luck in your journey.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Micki #200089 04-24-2020 06:35 PM
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Micki,

About 4 week into radiation I lost all semblance of taste. Everything tasted like corrugated cardboard. That continued till about 4 months past radiation. At that point the first taste i noticed was salt. I put salt on anything just to have some form of taste. Over the next two year I sloooooowly expanded into sour and savory. Sweet is another story. I really cant tell if can taste sweet or not. I don't think i can tell vanilla ice cream from chocolate ice cream. But I do still enjoy ice cream.

Critics fruits are also a mystery; oranges, tangerines, grape fruit are all the same but mostly taste like nothing. It is funny though, I cant really taste them but I do still eat them. Its kind of like you body want them even though your tongue does not know what they are.

For the past 6 years I don't think there has been much change in my tasting ability. At first it did bother me, but not anymore. It does not bother me at all.

Mildly spicy foods to some, are still extremely spicy to me. However I do believe I can tolerate "hotter" food today than 4 years ago.

I guess what i am saying is that, it is likely that his taste will recover somewhat. But over time his body/mind adjust and everything pretty much feels normal again. I am 8 years out and it does not bother me at all. Life is good.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!

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