Treatment for long term radiation fibrosis

Hello @taylorma, this is an interesting study. I had not seen any information on this here on Connect yet. I am 14 years out from radiation/targeted tx postop after surgical removal of an aggressive SCC in one ear canal. I have right side muscle atrophy of shoulder and face, and neck stiffening all starting within the last year. I'm still looking for help locally, as I am treated at Mayo Clinic in MN, a 10 hour drive away. I am seeing improvement from using a red light device and self massage and stretches. It will be interesting to see if there is anyone who has tried this drug.

@sepdvm Can you tell me the red light device you are using. There are so many on the market and I can't figure out which are legit and which ones are not. I'm just 2.5 years out but already the fibrosis is building. Thanks much.

I have fibrosis caused my radiation treatments for SCC on the base of my tongue. Mayo offered a treatment called fat grafting that greatly improved my flexibility and almost eliminated the pain. It is offered thru the plastic surgery group

My husband actually goes to Mayo Clinic in Phoenix every 3 months for botox ( we are in Tucson so only 2 hour drive) . He says it does help. His treatment for squamous cell carcinoma of the tongue was 26 years ago which included radical neck dissection. I am always researching for new treatments for all the late effects he has to deal with. Will have to inquire more on fat grafting.

@vvlaraia

Please let us know what you find out.

Thanks,
Rob

So as for me, I began having neck problems, headaches, tinnitus and hearing problems in 1983 shortly after leaving Camp Lejuene after being stationed there for 13 months.
In 1984 after my honorable discharge I went to an elderly chiropractor. He told me that I had a neurological disorder and chiropractic adjustment isn’t going to fix my neck but it may relieve pain…..fast forward….

I began receiving letters from the government saying that I had been exposed to toxic water while at Camp Lejuene….

Late 80’s I was losing my voice and underwent a biopsy of my throat, precancerous polyps were removed. I was informed that my uvula, tonsils and a section of my tongue needed to be removed. I refused that procedure……headache turned to chronic migraine. I tried getting help from the VA, DENIED!…

2016 stage IV base of tongue and throat cancer underwent chemotherapy and radiation. I had too much cancer for surgery so I was hit as hard as they could to kill that crap….

All of my previous issues got worse during treatments but nothing could be done to help…..

2022 began receiving BOTOX for the migraine….

2024 filed numerous VA disability claims, DENIED, appealed, remanded and waiting 🤷‍♂️….

2025 my neurologist had a neurosurgeon step in to look at my neck. He asked if I had suffered a head or neck injury and my neurologist told him no but I was exposed to toxic water and chemo and radiation. His reply was “you have severe cervical dystonia and my opinion would be it’s caused by the toxic water and worsened by the radiation.” He instructed her as to where to administer the Botox in my neck.

I know that was allot of information but maybe Botox would help some of you🤷‍♂️

MOJO

Some folks in this group have used Red Light Therapy. I have not, yet. But this article came from the Sloan Kettering cancer newsletter. Evidently they offer it to radiation patients. Maybe ask your cancer team to read it, too.
https://www.mskcc.org/cancer-care/patient-education/about-your-photobiomodulation-therapy

@mojo244
If the VA ever denies you, I highly recommend calling your Congressman. They may not be good for alot, but when the VA hears "my Senator" and/or "Representative _____", it will amazed you how rocket fast their perspective changes. In the early '80's, my father-in-law had recurring terminal cancer, had been treated multiple times, and just wanted to go to the VA hospital to pass, rather than at home. 1 call, and less than 24 hours he was in. Then 10 yrs ago, my mother's 2nd husband (who was 100% disabled due to Agent Orange) needed to go into the VA Care Center because of his increased dementia and unable to be cared for at home. They tried repeatedly but VA said, 'No room available'. I intervened when my mom asked; called U.S. Congressman, and the very next day there were THREE rooms available at the Center. Veterans gave their All, and we as a country need to stand up to our commitment to care for them.
Best of luck to you. Thank you for your service.

@mojo244 I just joined as I am trying to find people going through a lot of the same things my husband is. I see that you've been going through the same things he has - he's tough "Always a Marine"- spent 76 through 78 at Lejeune, living on base and drinking and swimming in the well water and with an MOS 1345 (heavy equipment operator) digging in that soil too.
I've been trying to help him get treatment for the long term effects of the radiation treatment, but so far, every place we've ever gone is not familiar with treatment for the cascade of health issues that continue long after the treatment saved his life. I'm hoping his upcoming appointment at Mayo might finally give some relief.
I'm interested in which area you are in - we are in Florida.
Thank you in advance!

@mwpcaretaker
We are in Idaho.
Did your husband get onboard with the class action lawsuit against Lejuene? The deadline was August 2024.
Has your husband filed for any VA claims for any of his illnesses that you think could be caused by the toxic water?

All of my claims have been either denied, appealed,remanded and in one claim the judge granted service related tinnitus. Tinnitus only gives 10% but at least it got my foot in the door for VA health care…not free but at least I can get in.
I’m hoping some of my other denials get overturned.

Anyway, I’m interested in how things are going for you guys as far as cancer and VA.
MOJO