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#201189 01-26-2022 11:49 PM
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Ali E Offline OP
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My last day of radiation is Monday the 31st.
I had stage 3 tongue cancer (SCCA)

Doing 33 treatments on my tongue and my neck.

Those of you that have done this or similar I have a couple questions.

Once radiation stops : when did your mouth sores start to heal ?

How long till you were able to eat without too much trouble ?

How long for everything to be better?


Allison Early
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Hi Ali E

First, congratulations on almost completing this treatment. It's a big step. I recall ringing that bell in the lobby loud and proud on my last day of treatment (30 days and 60 Gy units to mouth and neck) about 18 months ago. For me (and what I have learned for most people) The two weeks following treatment tend to continue to get worse/bottom out. Then, you start to see improvement slowly.

Recovery from radiation seems to be a long slow process. And, I have heard varying stories. It seems to affect people in many different ways. I was able to keep active (jog, hike, surf, or yoga depending on the day) throughout treatment. The mouth sores and neck burns were much better within about 1-2 months after treatment.

Flavors were also better within a couple months. But, I am 18 months out and still recovering flavors. For example, it took a couple months before I could eat a slice of mild pizza but now I can eat just about any plain/mild pizza. It took a couple months before high citrus fruit started to taste semi-normal again now I can eat any fruit. Alcohol still tastes terrible but I don't miss it much. I can now process carbonated drinks like a soda but slowly and again, I don't drink them much anyway. I still can't do spicier stuff like spicy Mexican or India. I can do the really mild Mexican and Indian foods again now. Some people have told me they noticed improvement as far out as 3 years.

I had to learn to judge my recovery from radiation in weeks/months. Surgery was more like daily improvement. I nicknamed it the slow burn and slow recovery. But, recovery, all the same.

Hope this helps and happy to answer any other questions.

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
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Ali E Offline OP
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How long till your speech was back to normal or just better?

Mostly I just wanna know if I will be able to eat decently and talk decently in a month following my last treatment ?


Allison Early
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Like Nels said, everyone is unique and different. It was three months after the end of treatment before the pain of it all started to die down for me. I was on strong pain meds well into my fourth month of healing. Eating was a slow transition from the PEG tube I was on to soft wet foods that also took quite awhile. I hope you have an easier time of things, but expecting to be back to normal, from reading patients posts here for years, seems a little optimistic. I hope I am wrong and your journey back to normal is short.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Ali E

For me, again everyone is different, speech challenge was tied much more to surgery than radiation treatment. They removed nearly half my tongue (right side) and rebuilt it with a flap of skin and artery from my forearm. I was able to speak (kinda) where people could understand me, if patient, while still in the hospital. It was about a month before I tried out my speech in public with strangers. It worked better than I thought. And, I found most, if not all people, were quite patient with me. The hang up was probably more me and in my head.

I used family and friends as practice. I would call or facetime nearly daily with someone. It helped me practice and gain confidence.

I have improved my speech greatly since surgery and treatment. It was a long, slow process. I still have days where my slur/lisp seems worse. But, today, I also have days were people barely even notice it. Maybe I am tired, spoke a lot that day, slightly dehydrated, etc? I try to remember to do my tongue/swallowing exercises when driving too/from work. Did you work with a speech therapist yet?

Take a few videos of yourself talking and go back and watch them after couple weeks. I think we sometimes need that reference to see how far we have come.

Keep us updated!

Best
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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