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Looking for help with radiation fibrosis; Tips?

Head & Neck Cancer | Last Active: Aug 6 1:23pm | Replies (13)

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@gmg1

After oral cancer surgery, I underwent radiation therapy. That caused radiation fibrosis that has progressed in my neck over the last 8 years, and now to the point that it could be harming the original reconstruction of my jaw following the cancer surgery. (I do not have trismus. And this is not lymphedema.)

I have researched the research on the condition, called specialists as far away as France, spoken with reconstructive surgeons, and none of them has offered viable/reasonable or promising relief for it, and sometimes they offer nothing at all.

It's not so much the muscle spasms that are a problem. It's the scarring tissue that is causing pulling on my jaw, or contracting. I tried the Botox treatments and decided to go with Baclofen muscle relaxer. That only treats muscle spasms. I need to relieve the contracting in my neck, and actual surgery cannot be done since the scarring tissue would never heal.

I have been reading research about fat transfer or fat grafting in RFS patients. Does anybody, especially at Mayo, know of any specialists who are doing that type of procedure to help alleviate fibrosis scarring in the neck?

Thank you.

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Replies to "After oral cancer surgery, I underwent radiation therapy. That caused radiation fibrosis that has progressed in..."

Welcome, @gmg1. Clearly you are someone who has done their research. I'm sure you've seen this article, but I post it in case others in this discussion may be interested in learning where studies are at with respect to fat grafting.

- Fat Grafting Shows Promise for Cancer Patients With Radiation-Induced Skin Injury https://www.plasticsurgery.org/news/press-releases/fat-grafting-shows-promise-for-cancer-patients-with-radiation-induced-skin-injury

Search Mayo Clinic's clinical trials I found a few studies regarding radiation fibrosis:
https://www.mayo.edu/research/clinical-trials/cls-20205731
I recommend that you contact Mayo Clinic to see if this is a procedure available to head and neck cancers with radiation fibrosis in the neck.
To speak with an appointment coordinator, see contact info here: http://mayocl.in/1mtmR63

And/or you may wish to speak with a research coordinator to see if there are study trials available to you:
Cancer-related clinical studies questions
Phone: 855-776-0015 (toll-free)
https://www.mayo.edu/research/forms/cancer-clinical-trials