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Joined: Jan 2020
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Joined: Jan 2020
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Hi Erica: Tried PM'ing you but it didn't work. How are things going now? I hope the side effects are starting to wear off. I'm headed into 6 week of radiation treatment next week in a very similar situation as yours (43 years old, side of tongue cancer, never smoker, 6 weeks of rads but no chemo). Thanks for posting your diary; was very helpful. Hope you are feeling better.


Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Completed six weeks of radiation on 5/6/20
Joined: Dec 2019
Posts: 39
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Posts: 39
My recovery diary was moved to the blog section. Right now I'm about three and a half weeks after my last treatment and all weird tastes are gone, I can eat most foods, but my sense of taste is either gone or very dull. I can't taste sweet or salty at all. My mouth is still sensitive, so eating causes a little pain, but I can eat tortillas, bread, pizza. The softer the food the longer it takes for my mouth to get sore. I never had any saliva issues, but I do have a cough that my doctor doesn't understand. It may be due to increased sensitivity, the thick mucous, or the tiny blisters that pop up on the insides of my cheeks and roof of my mouth. This is happening a little less and has improved because previously it actually caused some vomiting before. My energy is probably 80%. I just finished my first week back at work and they say I'm looking and acting more like myself. My skin is still dark and dry/flaky.

My mantra through the whole ordeal was "this is temporary" and I saw that you posted something similar in another thread. When you're going through this time seems to drag -it feels like it's never going to end, but keep reminding yourself it will. I had check off boxes for all my treatments, I had a countdown widget on my phone, and for the last 9 I changed my phone wallpaper to the number of treatments left. Just remember that that 2 week period after radiation ends it probably the worst. With pain meds and Ensure or Boost you'll get through it. For now I'd say keep active and do all the things you love as much as possible while you feel good and if you get depressed force yourself to do those "normal" things slowly, or participate in other ways. I really think having things going on other than being a patient helps keep spirits up and treatment in perspective. Good luck.

dsm girl at gee male

Joined: Jan 2020
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Posts: 51
Thank you. Great advice.


Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Completed six weeks of radiation on 5/6/20
Joined: Dec 2021
Posts: 4
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Joined: Dec 2021
Posts: 4
Hello- I was just looking through posts as I am starting radiation in about 3 weeks. This was so helpful to see your experience. And yes know mine will be different, but nonetheless gives a sense of possibilities.

I hope you are doing well.

Peggy


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I was diagnosed with stage 4 cancer in 2015..HPV related.
My experience with radiation treatments was horrendous...
I have chronic claustrophobia...and always require taking lorazapam prior to tests..this includes MRI's..cat scans. etc.,
Prior to treatments...my oncologist talked to me about being measured for the radiation mask..at first l didn't understand what he was talking about. ???
Apparently..not only would l be going through the horrors of radiation..l then find out that l will be required to wear a close fitting plastic mask..and that l would be securely locked to the board l would be lying on for the radiation treatments wearing the mask.
I don't just have claustrophobia...l also absolutely freak out when confined ...and during radiation treatments it is imperative that you must be absolutely still...confined in other words..
This is to enable them to pin point the exact spot that needs radiated.
After the radiation treatments, l vowed that l would not put myself through that brutality again...although l doubt my type of cancer would allow another regimen of radiation & chemo.
My side effects still linger after 7 years...and are life changing..insomnia..facial numbness..loss of teeth..lack of saliva..difficulty swallowing...low energy..hearing loss..well..the list is long..
However..l am still here to tell the tale..so for that..l am grateful..
Sorry to be so negative...but l want to be honest..and not sugar coat my ordeal with radiation..
Chemo on the other hand was no problem for me..side effects were low energy and nausea.

Good luck. !!

Last edited by exiledbrit; 06-30-2022 06:44 AM. Reason: Second thoughts.

KITTY CAT.
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Your diary has been a welcome read for us. My BF is on Day 24 of 33 day radiation regimen, with concurrent Cisplatin once a week for six weeks (one more to go) for oropharyngeal cancer in throat, tonsil. It had been progressively getting more challenging but the last few days it seems to have gone strait off the rails as far as mouth pain. Where before he could tolerate broths, thin soups, Boost high calorie, now everything burns, and swallowing virtually anything is like knives in his throat. He has the Magic Mouthwash which helps a bit. Was there anything that you found that helped with the miserable mouth pains?
Thank you for your inspiration too- we know it’s temporary - just hard to handle on hour to hour basis when getting next to nothing down.

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