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Hi, I'm new here and am one week post treatment for tongue cancer. I continue to have severe radiation burns on my neck and in my throat. I can cope if I know this will end some day, but can anyone tell me how this lasts?

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The external burns will heal quickly and your new skin will feel like a baby's bottom. It's the internal damage that stays with you.


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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Kate,
Like all of the side effects of radiation treatment, the answer is generally different for each of us. I'll relate my own experiences and hope it helps you.
I suffered from some pretty severe burns in relation to others going through the treament at the same time as I. Following the last rad treatment, it took about two weeks for the side effects to peak, and then the healing started. About two weeks after that, using Sulfadine cream and Vigilon pads, the sores and open wounds on my neck had healed. Another two weeks until the sores in my mouth and throat had healed, and I started weaning myself off of the pain patches. From there, for me, recovery went remarkably well. Much better than I had anticipated, and I was back to work full time 3 months after completion of treatment.
As I said though, recovery will be different for each of us. Hang in there though, the light at the end of the tunnel is NOT an oncoming train wink
Welcome to the site by the way. You will find many people here who have traveled the same path you are on, willing to help you in any way.
Take care of yourself, rest, eat, and heal.

Good Health,

Chuck


SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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Hi Kate, The burns do go away on the outside of
your neck but, not on the inside of your mouth.
I'm 15 years out and still have burns on the inside of my mouth. Just give yourself sometime
to heal.
Cathy


Cathy

SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
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As Chuck said we all heal at different rates, but I must admit it was 2 weeks before the burnt and blistered skin on the back of my neck and allowed me to ditch the dressings.

I am now nearly 7 weeks out fo RT the external rash is now light pink but still visible and hot to the touch but not blistered and teh skin has healed nicely and very smooth.


Steeplechase

SCC Left tonsil removed, T1N2/3 May 2005, left radical neck dissection and wisdom tooth removed, 32 lymph nodes removed, 1 infected. 33 Fractions of RT, 2 doses of Cisplatin and a NG tube for 4 weeks! Treatment ended Mid August 2005.
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Kate, Some of the above posts would have you expect to have sores or burns on the inside of your mouth for ever. This is not usually the case. It does take some weeks for complete healing (some have had to wait even longer) you should expect to feel better on a weekly basis. The change is gradual, but better you will get.

Hang in there!


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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It took 2 weeks for my external burns to heal and that was using silvadene cream, which helped enormously.

Usually the burns heal on the inside but it can take quite a while. In my case it has for some reason. I think most of mine have healed now but yet I still have scar tissue (? I guess?) in the spots where the burns were that makes for all sorts of little bumps and raised patches on my tongue, throat and the lining of my cheeks and lips. It feels like it sticks to my teeth in spots ebcause I have no saliva right now. I am four months out.

I also have a few still-tender spots--one on the back of my throat one on the lower side of my tongue--opposite side from where I had the tumor. I think the tongue one is because it is still rubbing against a tooth back there. I don't know why the throat still hurts so much. I do know that if either of these appear to have not healed in another two months I will ask about hyperbaaric oxygen therapy which can apparently help heal sores that don't want to heal on their own in this regard (you may want to read CClark's blog about this).

So one way or the other, there's good reason for hope although you may have to have some patience as well (this whole experiecne has taught me a lot about patiecne which was never my strength)

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Kate,

I had the most horrible bloody, oozy skin for a couple of weeks and still almost 2 years (minus 4 days!) I have a dark tint to my skin in the radiated area that makes my once fat chin (from lymphodema) look fat although it is only white and stands out.

My throat still hurts but only when it is dry or I eat something too salty like peanuts, chips, etc. (adding anchovies from my pizza the other night).

As you fellow Minniesotan said...Hang in there as it will get better.

Ed


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
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Ed, you need to work on that accent! It's Minniesootan. Go watch Fargo again. :p


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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One of my favorite movies of all time... acted with such understatement. And the wood chipper is priceless.... When Mark offered to come work the OCF booth at the California Dental Meeting, I was almost sure he would sound like one of the characters in the movie. Needless to say I was dissappointed at how totally normal he was, I had all my jokes and one liners ready to go.


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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