| Joined: Dec 2019 Posts: 39 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2019 Posts: 39 | I'm a little over 5 weeks post radiation for a tongue lesion. My tongue is healing great and any pain there is minimal. I'm even able to taste most things now. But, the areas behind my lower molars (where my wisdom teeth would be) and the roof of my mouth get sore fast while I eat and often develop tiny fluid filled blisters that are extremely painful.
Just wondering how soon this resolved for others? I really thought the healing would happen before getting my taste back. Somehow it seems more frustrating now because I'm so close to being able to eat normally again! | | | | Joined: Dec 2019 Posts: 39 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2019 Posts: 39 | Answering my own question for the good of others who happen upon this thread later:
Google says 6-8 weeks is how long it takes to heal after radiation. I'm more sore now than I have been in weeks and I wonder if what I'm eating or drinking is causing there backslide. Luckily I am meeting with my oncologist (rather than my useless radiation doc) on Wednesday. Hopefully he'll have more info and advice for me.
Anyone with info on their healing, I'd still love to hear from you! | | | | Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | Ouch! I found rinsing my mouth with warm water helped ease the pain from ulcers. Not sure if you have it in the US, but in the UK we have an ulcer treatment called Iglu. It has lidocaine in it and I found it the best product for pain relief so that I could eat and drink.
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
| | | | Joined: Dec 2019 Posts: 39 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2019 Posts: 39 | I haven't heard of Iglu. My doctor did give me viscous lidocaine which was too thick and gross to swish with, but I'm using cotton tipped applicators to apply some to the store bits before eating. It helps, but I wonder if I'm continuing to cause trauma and delaying healing? I'm trying to eat yogurt and similar soft things, but dinner usually requires some chewing because I want to eat with my boyfriend.
I just wish I knew how long to expect this to go on... | | | | Joined: Aug 2019 Posts: 57 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2019 Posts: 57 | I finished rads end of October and still have jaw pain (trismus), difficulties swallowing - but no blisters or other soreness. Dry mouth continues. My radiation oncologist puts the continued symptoms on necrosis from radiation but they are also testing for a recurrence. RO thinks symptoms could last 18 to 24 months which (to me) seems like a long time..
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.
| | | | Joined: Mar 2020 Posts: 2 Member | Member Joined: Mar 2020 Posts: 2 | I finished my radiation/chemo on 1/13/2020. I still have a large sore on the roof of my mouth that extends down into my upper esophageal area. This is still very painful and limits my caloric intake because I can only eat smaller portions of very soft foods. I have been on diflucan for a ten day stretch and then 30 days with no help. I saw my Rad Oncologist today and she is starting me on an antibiotic and Trental. Hopefully this will help, my mouth/throat has improved very little since my last day of rads.
LASCC BOT T2N2 diagnosed August 2019 Induction chemo x3 Chemoradiation 7chemo, 33 radiation | | | | Joined: Jan 2020 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2020 Posts: 51 | I’m taking something called Doxepin. It comes in a capsule but you open the capsule and dump the contents into 10 ml of water, wait for it to dissolve, swish for a minute and then spit. It’s been helpful. Maybe ask your doc about it.
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: Mar 2021 Posts: 1 Member | Member Joined: Mar 2021 Posts: 1 | Hello. Would you please tell me what you eventually did to relieve those sores. How long did they actually last? How bad was the pain? 1-10.
kenneth brown
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Welcome to the forum. It sounds like you’re really bothered by the mouth sores. Unfortunately, they are a side effect of radiation and will take some time to heal — they will run their course. Have you been given some magic mouthwash by your doctor that you can use to numb the mouth pain. There are different formulations and it is on prescription so you need to speak to your doctor about it. I would suggest to search ‘mouth pain’ or ‘mouth sores’ on this forum, you will be able to read about how others have dealt with it.
As for how much the mouth pain hurts, different people have different pain tolerance and so you are unlikely to get a very precise answer that will reflect your experience.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jul 2021 Posts: 2 Member | Member Joined: Jul 2021 Posts: 2 | Hi Ken, Im two weeks post radiation for lip cancer. Absolutely nothing helped my raw, even bleeding interior mouth ulcers and top of the lip sores. I also have large swaths of white tissue inside my mouth. It's been very painful and depressing; however, I tried some coconut oil three days ago. (Organic that's used to cook with). I swear it is definitely helping!!! I hope you get relief soon.
Laney | | |
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