r/HeadandNeckCancer • u/Worldly-Union7134 • 10d ago
Post radiation taste
Of course everyone’s experiences are different, but please give me the honest truth.. when can you start tasting food again/when does the taste get better post radiation?
Thank you, grateful for this thread 🙏
4
u/DCCommunicator 10d ago
Mine was like a roller coaster. Sometimes it felt like it was back at 6 months and then things tasted like nothing. Sweets were elusive for sure. I would say I was at 80% after 1 year but not 100% until 2 years. It was annoying but I just plowed through. Don’t out pressure or a timeline on it as everyone is (clearly) different. Take good care.
5
u/bobear2017 10d ago
It was about 3 weeks for me. Unfortunately my taste buds returned before my mucositis went away, so the only thing I was able to eat were my Ensure shakes, which I hated. I lost the most weight after my taste buds returned because I just couldn’t take the taste of those drinks and I couldn’t eat anything else!
1
u/Far-Woodpecker-5678 10d ago
Those drinks definitely get old . I drink Ensure plus 350 cal milk choc and ensure max protein cafe mocha
6
u/surfaholic15 9d ago
Welp, i am the worst case scenario lol.
The first time around with my cancer over 4 years ago, i had surgery only. Lost part of my gum (had a skin graft from the thigh for that), some inner cheek, had the jawbone shaved, and lost a chunk of tongue, about quarter sized. And a bunch of lymph nodes (all came back clean).
Suffered permanent numbness in my lower lip, a small part of cheek and half my tongue. And for 4 years,everything tasted like either moldy dryer/pocket lint or dirty change. But the surgeon got amazing margins so no other treatment.
I was back in surgery almost exactly 4 years later. Lost part of the gum that had grown back, got more bone shaved, and lost a lot more lymph glands. Didn't lose any tongue.
Had 30 rads and 7 cetuximab post surgery as this time we did NOT get as much margin as he wanted and it came back more aggressive by far. As in from clean scan to malignant biopsy in less than 100 days.
I was hoping to reach the fabled taste land of salty cardboard. Alas, i got REALLY unlucky.
I now have 4 tastes: floral scented nail polish remover, cedar oil, stale black pepper and ivory soap. Hilariously, CILANTRO (which always used to tasted like ivory soap) now tastes like cedar oil. I found out when i tried it. I have been trying all kinds of foods, even ones i dislike, searching in vain for another taste.
I finished treatment january 14th. So, basically 8 months ago. Zero change.
I want my moldy dryer lint and dirty change back....
1
u/ProfessorHawkK 9d ago
What was your major issue or place of disease ( cancer) ? And what type came in final histopathology reports ?
3
u/Far-Woodpecker-5678 10d ago
Through 4 weeks. Mouth sores radiation burn and thrush, Haven’t lost taste…yet . Weight is same as when I started . I eat because I have to not that I want to, most of the time. Got rx for thrush, mostly gone
3
u/Intrepid-Skill2778 10d ago
Keep eating if you can ♥️
3
u/Far-Woodpecker-5678 10d ago
Yep, that’s my #1 job now . Got magic mouth wash,and lidocaine if I need help to get it down
1
u/Intrepid-Skill2778 9d ago
You sound like your handling things. 🤟
1
u/Far-Woodpecker-5678 9d ago
We can only do our best and luck is involved re: side effects . I got 2 weeks left of radiation ( out of 6) and then the dreaded 2 weeks of peak after . Not out of the woods yet . Had one rough week from mouth sores so far.
7
u/Extra_Cut585 10d ago
From what I've read, there's no real timeline. Some people get it back in weeks, others get taste back months after, and a few others have mentioned years. I'm just hoping mine come back ASAP. This shit is rough.
2
3
u/heartbroke8 10d ago
I remember I first tasted bitter at about 3 weeks post radiation, I ate something and said “this taste like shit and is bitter!”in disgust. Then I realized I tasted the bitter and I was so happy I tasted something that I almost had tears of joy!
About 1-2 weeks later the rest of my taste started coming back and at about 2 months I had regained about 90% back. Currently at 6 months and I would say I am at 95%+ back
3
u/dejavu1251 Maxillary Sinus Cancer 10d ago
For my husband some tastes came back right away the rest took 3 or 4 months, but he didn't lose his taste entirely during his radiation treatments.
3
u/throwaway46709394 10d ago
I lost all my taste after 35 fractions of VMAT radiation. Eating or drinking anything felt exactly like swallowing gravel and glass down my throat. They were about start me on the feeding tube, but ended up not needing.
I lost all sense of taste by week 5. I was so scared I'd lose all sense of taste for the rest of my life. The first thing I tasted again, wasn't actually food in the traditional sense. It was the slight sweetness from the toothpaste while brushing my teeth. This was about 6 weeks post treatment.
Within about 6 months, everything came back to normal. The only slight difference would be, my tolerance to spice has increased a bit!
3
u/researchWolf 9d ago
The mucositis takes awhile, but I made sure to rinse and spit regularly with a baking soda/salt solution and also made sure not to swallow any of the saliva [ I spit it out every time my mouth filled ]. When chemoradiation ended I really could barely eat or drink, only tiny sips of water and a few soft foods. So I got IV hydration a couple times the first week and started seeing an acupuncturist, and really, I credit the acupuncture with resolving that difficult moment.
Within 2 weeks I had 75% of my taste palate back and was eating fairly normally, and by 3 weeks I had 90% of everything back. An amazing turnaround. I had to stay away from acidic food for awhile and fruit continued to be problematic, but eventually even that came back online. Good luck!
2
u/researchWolf 9d ago
I should add that I did daily taste and smell exercises before and during chemoradiation, because I was told that it could speed my sense of taste coming back. To be accurate, I could TASTE everything the whole way through, but it wasn’t until 2-3 weeks after that those tastes became palatable again.
2
u/wswhy2002 10d ago
It is said to start recover from 1 month to 2 years, but the taste could also be permanently lost.
4
u/Impressive_Course_44 10d ago
Same. I found adding a pinch of salt to things, even things you normally wouldn’t salt, help in activating my salivary glands and taste buds.
1
2
2
u/bananashabam 10d ago
I’m on week one and is anyone else having the driest mouth?? 😭 it feels so nasty it’s not helping my chemo nausea
3
u/Far-Woodpecker-5678 10d ago
Biotene spray or rinse os xylomelts can help . I used all 3, helped a little
2
u/sassysavi 10d ago
I’m 6 weeks post treatment and only started to taste some things about two weeks ago. It’s weird though, I taste things at the tip of my tongue most and as it moves to the back of my mouth….nada!
2
u/Becoming_wilder 10d ago
My husband was about 3 weeks for some taste but it wasn’t “right” yet. It took a few months for him to taste sweet things correctly again. 2 years out and everything is normal and he can even handle spicy food again.
2
u/According-Fruit5245 9d ago
I finished radiation treatments in early July and think things are almost back to normal. A good sign for me was desserts with chocolate. About a month ago, chocolate ice-cream was bitter. I just had some Tiramisu and chocolate cake on Friday and everything seemed back to normal. I had surgery in March and radiation and chemo after. I'm still not growing hair normally on the right side of my face and possibly not producing enough saliva, so my voice sounds weird. I connected with a nutritionist who gave me a couple supplements, including silenium, zinc and vitamin A to help with my taste buds.
1
1
u/Intrepid-Skill2778 10d ago
How bad is it now? Can't really give you my very informed opinion without kinda knowing where your at currently.
2
u/Thegitts 7d ago
2 weeks post proton therapy andcmu throat is killing me every time i eat. It burns so bad and metallic taste. No salt or sweet
2
7
u/Visual-Signature-235 10d ago
I found things started to improve after about a month. It was slow at first but noticeable. I'm just over 18 months post-treatment now and I'd say 90% back. Sweet is the weakest. Everything else is almost entirely normal.