Looking for help with radiation fibrosis; Tips?

@nnurse, I think you’ll appreciate this discussion with @lindst427 @alpaca @nbkod7b @mojo244 @clevyjam @conniejeffers @srm and others:
- Trismus (lock jaw) after Head & Neck cancer treatment: What helps? https://connect.mayoclinic.org/discussion/lockjaw-after-sinus-cancer-surgery/

Vnch, do you work with a physical therapist and/or speech language pathologist?

I personally found speech therapy a waste of time and money.
I am taking Baclofen 10 mg 2-3 times per day. This helps keeping my jaw loose for eating and speaking.
I’m also getting Botox injections to reduce the severity of my migraines. It may also be helping my jaw tightness but can’t say for sure yet.

MOJO

Vnch - Ah, the good old Therabite. I had stage IV squamous cell carcinoma in 2006 at the base & right side of my tongue and esophagus. Dr. Kerry Olson & Dr. Haack (Jayson?) did a radical neck disection. Then, seemingly dozens of full blown radiation sessions with matching chemotherapy appointments - ugh! One year later had a small recurrence on a vocal chord treated with just chemotherapy. I've been cancer free for going on 18 years now. I learned a number of things during my recovery, including accepting I was entering a "new normal" of health. Accept (and appreciate) your caregiver's help. If you don't have one, it's a lot tougher & frustrating. The Therabite hand unit helps with the trismus (nothing else I'm aware of does, though - it's genius). I was advised to relax and let the appliance lift and separate your jaw gently - stopping when you start to feel the beginnings of the stretching pain. Don't force wider opening. If you do, the microtears in the mandible muscles "bulk up" and makes your trismus worse. Also, I do jaw & tongue stretching & flexibility exercises shown to me by a speech patholigist, which helped loads with my speaking, enunciation, diction & overall communication (and for me, a former on-air D.J. - SLOW DOWN when talking!). I do lots of stretching in my warm morning shower, including the important slow 360 degree head rolls. Lastly, it's important to stay fully hydrated. When I first went back to work, I'd have these debilitating charlie horses and muscle cramps when lifting, carrying or exerting my upper body - and it was a killer. Learned to force hydration (water) into myself and haven't had but a few minor "charlie cramps" since. Hang in there Vnch, it will get better, but takes months and years to really get a nearly complete recovery. Now, i'm probably about 90% of where I was physically, pre-cancer. Good luck! EdTugMan

I have been looking for suggestions as well. I hate sounding pessimistic but my physical therapy did nothing. I too used a Therabite after applying heat and found any progress I made dissapeared once the session was over until now my mouth is basically closed. I can get one tongue depressor in between my teeth. Everything I read says catching it early and taking action right away is the best chance for recovery. I hope the best for you.

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.

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

Thank you, Colleen. I did see that article a couple years ago and even had a surreal experience in an appointment with Peter Rubin. During a teleconference with him, he recommended I travel from Georgia to Pittsburgh so his team could have a look at me. Never heard back from them. I called and two or three times to set up an appointment as he said to, but they never responded.

I've looked into clinical trials, but like the one you noted here, they're closed. I've checked the clicnicaltrials.gov and even those in the UK.

You could say I'm researched out. I just think the idea of fat grafting for radiation fibrosis of the neck is simply a research topic, and nothing more. I was hoping to find an actual practitioner. I don't think they exist, at least not in the U.S. I appreciate your time. I will try the questionnaire you suggested.

Thanks.

I had head and neck cancer .. and I have fibrosis in my neck .. and scar tissue and its affecting my cartroid arteries.. and they said there was nothing they could do.

I had nasopharyngeal cancer treatment in early 2006, and the late effects started in 2012 - at that time, speech and swallowing was not a big issue (still able to communicate well and still able to swallow with liquid to assist). But during the COVID pandemic lockdown, the late effects of radiation got so bad to the point where I had problems with speech (words slurring) and with swallowing! I am now diagnosed with dysphagia and with severe neck fibrosis. I am going on the assumption that there is no known cure for my speech and swallowing which are the late effects of radiation - and at the moment I am doing my best in dysphagia exercises to prevent these disabilities from deteriorating! A big change to my life - going forward !

I also have fibrosis affecting my carotid arteries and swallowing. I have regular NIVA ultrasound studies. My vascular surgeon said surgery for carotid occlusion is most likely going to be needed in the next few years.swallowing has become increasingly difficult. I am 7 years post chemo radiation using proton radiation for stage IV SCC base of tongue primary and mets to two lymph nodes. My fibrosis is worsening and my oncologist isn’t offering any relief other than PT, OT, Speech and swallowing Therapy. As the fibrosis worsens, this week he recommended palliative care to see if they had suggestions to improve quality of life. Has anyone else been offered this and if so, was it helpful? Also wondering if anyone has had carotid surgery post treatment. Thanks!