after affects of radiation

williamohara · May 31

Good afternoon all. I have some questions and need some information.

I was stricken with stage 4 head neck cancer April 2022. Underwent radiation and chemotherapy.

About june of 2023 I started with my inner gums disappearing and causing Osteoradionecrosis.

This has progressed to where I am a candidate for surgery down in Sloan Kettering Cancer Hospital

in NYC. The surgeon stated that a fracture of my mandible is imminent. I have multiple

appointment within the next couple of weeks with surgeons from Sloan Kettering. I am on a

super soft diet, hoping this doesn't break. I am a nurse and have been working the entire time but

know that if and when this does fracture, or the date for surgery arrives, I will be out of work for at

least 6 months for PT Speech, Swallowing and whatever else.

My wife and I are curious about hearing that the American cancer society will assist a caregiver or

wife in finding a hotel in NYC so they can stay during the surgery and recovery period of someone

such as myself having this surgery. ( we live in Latham, NY ). If anyone knows of information about

this and ANY other assistance we can utilize, we thank you.

wbcgaruss · May 31

Hello, williamohara, and welcome to the CSN H&N discussion forum.

I am so sorry you are going through this situation with your gums disappearing and Osteoradionecrosis rearing its ugly head. I would say this is the situation you didn't bargain for and probably didn't think of. I don't recall anyone that I can remember having their gums shrink away like that, did your doctors attribute that to the radiation?

There are many places that will help with lodging and other things I will list some below.

American Cancer Society Patient Lodging Programs

https://www.cancer.org/support-programs-and-services/patient-lodging.html

Here is one that works with the American Cancer Society called Extended Stay America…

https://www.extendedstayamerica.com/acs-partnership

Here is another-Cancercare…

https://www.cancercare.org/tagged/lodging

There is actually a very large number of help places you can check out I will post a link below and you can look through them. Be sure when you look on one of their sites to check out the whole page and look over the whole site because there is quite a bit on some of these sites offered besides just lodging.

https://www.google.com/search?client=firefox-b-1-d&q=free+lodging+during+cancer+treatment&dlnr=1&sei=bE9aZqSYK4uh5NoPiaGNuA0#dlnr=1&ip=1

Also, check this site… Oral Cancer Foundation…

https://oralcancerfoundation.org/resources/

And here is one more search that may be of assistance to you…assistance with travel lodging finances etc during cancer treatment…

https://www.google.com/search?q=assistance+with+travel+lodging+finances+etc+during+cancer+treatment&client=firefox-b-1-d&sca_esv=e2a26d2bee1a99bc&ei=EFZaZpTsNdfX5NoPgpKFkAQ&oq=assistance+with+travel+lodging+finances+etc+during+cancer&gs_lp=Egxnd3Mtd2l6LXNlcnAiOWFzc2lzdGFuY2Ugd2l0aCB0cmF2ZWwgbG9kZ2luZyBmaW5hbmNlcyBldGMgZHVyaW5nIGNhbmNlcioCCAEyBRAhGKABMgUQIRigATIFECEYoAEyBRAhGKABMgUQIRigATIFECEYnwUyBRAhGJ8FMgUQIRifBTIFECEYnwUyBRAhGJ8FSJVVUNUUWNUUcAF4AZABAJgBc6ABxQGqAQMxLjG4AQHIAQD4AQGYAgOgAtMBwgIKEAAYsAMY1gQYR8ICCBAhGKABGMMEmAMAiAYBkAYIkgcDMi4xoAfLEg&sclient=gws-wiz-serp#ip=1

I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.

Wishing You The Best Take Care, God Bless Russ

Mavish · June 1

Hi William,

I am sorry to hear that this is happening to you. My cancer is diagnosed and treated in 2016 and had my first ORN in 2018. Two teeth from the upper and one tooth from bottom jaw came out on their own and they did not heal ( teeth were fine they came out as the bone did not support them.) I had exposed bones which mucosa did not cover them. I was having very frequent severe infections.

In the cancer centre I was treated (one of the best in Canada), only treatment option I was provided was to surgery, but in my case it was decided to delay as much as possible as the issue in the upper jaw was requiring extensive reconstitution.

Than I met with Dr Samim. My dentist referred me to her. She is in Montreal Canada.

https://www.linkedin.com/in/firoozeh-samim-34445383

https://periomontreal.com/our-practice/dr-firoozeh-samim/

She applied a laser treatment accompanied by a doxycycline ( antibiotic) - I would have very frequent infections. And gum tissue covered the necrotic bone. Treatment took about a year. Treatment is painless. Sessions take about 20 minutes. Initially they were frequent than reduced to onece a month and than twice a month.

Everyone and each situation is different and I am in a no position to advice you what to do. I am just sharing my experience. ( I have not had any exposed bone and infection for abot a year now)

God bless you and be with you in your journey.

M

after affects of radiation

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