| | Joined: May 2014 Posts: 17 Member | OP  Member
Joined: May 2014 Posts: 17 | Was wondering if anyone had radiation burns in their mouth so bad they couldn't even drink water much less eat. I had radiation & chemotherapy back in March and April and still can't eat or drink because it burns. I had no idea recovery would take so long. Is this normal?
Pattie
Surgical biopsy Jan.2014 diagnosed verrucas carcinoma, previously biopsied by oral surgeon in office diagnosed verrucas leukaplakia. Radiation 33 sessions 4 chemo. Jpeg March 2014, removed Dec 2014 when started drinking boost. Surgical biopsy Oct 2014 - Jan. 2015. no cancer
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Pattie, please take a minute and click on the tiny flashing envelope next to the My Stuff tab. Ive sent you a private message (PM) The enclosed link has info on how to navigate the forum and how to make your signature which is very important to help us help you.
Yes, unfortunately this is not that uncommon. Mouth sores can last for months. Your recovery depends on your nutrition. Every single day you need a minimum of 2500 calories and 48-64 oz of water. This needs to continue until your hit the one year post rads mark at the very least. A full recovery can take all of 2 whole years after rads. Everyone is different and some patients have severe mouth burns which cause them great discomfort. I know how bad it hurts and I feel so bad for what you are going thru.
Ask your doc for a prescription of magic mouthwash. This will help to numb your sensitive mouth long enough for you to be able to eat and drink. At least 4 times per day rinse your mouth gently with 16 oz warm water, 1 tsp baking soda and 1 tsp salt. This mixture will help heal the mouth sores. It probably will burn so you can decrease the amount of salt in the mixture, but try your very best to keep some salt in the mix. Sleeping with a humidifier and taking in extra water will also help a little bit.
Hang in there, it will get easier. It just takes a loonnngggg time.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Pattie, I hope you are communicating this to your medical team. I, personally, think it's a bit long to still not be eating because of mouth sores from radiation and chemo. I'd be suspicious of things like thrush or infection unless that's already been ruled out. Not swallowing for as long as you have can be hurting your swallow process.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | Talk to the medics Pattie. The sores are not uncommon but you shouldn't be in pain. Pain interferes with the healing process and makes getting enough nutrition difficult. Recovery does take a very long time, and all through your recovery you should have a doctor reviewing your progress regularly. Report any new symptoms and keep on top of your pain meds.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
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