1. < Head & Neck Cancer

Relief from Radiation Fibrosis Syndrome

Posted by stephenrfleury @stephenrfleury, May 13 4:21pm

ad SCC on the base of my tongue and a couple of lymph nodes in 2020 and was treated with radiation and chemo. Like many of you, I had pretty severe fibrosis in my neck.

In the past month, I had a combination of 2 treatments at Mayo in Phoenix. First, I had Botox injections in my neck to relieve some of the stiffness in the muscles. Those were followed up with a surgery called fat grafting, where they harvest fat cells from your body (belly for me), and inject those cells into your neck to soften the fibrosis. They also breakup some of large fibrotic cords. It has relieved just about all of my pain and much of the stiffness.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

jmcates11 | @jmcates11 | May 23 1:08pm
In reply to @56tburd "I've never received such a diagnosis, nor is this something I've ever heard of or have..." + (show)
@56tburd

I've never received such a diagnosis, nor is this something I've ever heard of or have been offered over the past 19 years. The silver lining in the uptick of neck cancer is the new treatments being tried. I'm glad it worked for you. If you haven't seen my post, keep an eye on your BP. Up to 80% of patients experience baroreceptor failure after neck cancer treatment, causing one's BP to fluctuate wildly. Good luck!

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What is BP?

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1 reply
lilypilly | @lilypilly | May 24 10:13am
In reply to @josk "From what I had goggled - "... severe neck fibrosis can lead to dysphagia (difficulty swallowing)..." + (show)
@josk

From what I had goggled - "... severe neck fibrosis can lead to dysphagia (difficulty swallowing) and dysarthria (difficulty speaking) due to the stiffening of tissues and muscles in the neck and throat. This can impact the range of motion and coordination needed for both swallowing and speech...."
I will bring this up with my doctor in PMCC in my next follow-up appt - which is start of next year.

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Yes please. I too am intereted.
Itbhas been 8 montjs post treatment and i am unable to eat a d awollow solid food. My speech is completely off. I do weekly Lymphatic massages with a therapist Md my own at home. However it does not seem to be getting better. ANY helpor advice will be amazing!
Thank.you.

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4 replies
roblem | @roblem | May 24 1:45pm
In reply to @lilypilly "Yes please. I too am intereted. Itbhas been 8 montjs post treatment and i am unable..." + (show)
@lilypilly

Yes please. I too am intereted.
Itbhas been 8 montjs post treatment and i am unable to eat a d awollow solid food. My speech is completely off. I do weekly Lymphatic massages with a therapist Md my own at home. However it does not seem to be getting better. ANY helpor advice will be amazing!
Thank.you.

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Have you tried getting a speech/swallowing therapist for head & neck cancer?

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1 reply
stephenrfleury | @stephenrfleury | May 24 2:24pm

Yes. I went to them a lot in the beginning, annual last few years. I only have mild swallowing issues and no speech issues. Early on, I had a lot of lymphedema issues and ended up with Flexitouch Plus. They weren't able to help with my severe fibrosis. The PT person was the one who hooked me up with the Botox and fat grafting, followed by PT.

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stephenrfleury | @stephenrfleury | May 24 2:27pm
In reply to @lilypilly "Yes please. I too am intereted. Itbhas been 8 montjs post treatment and i am unable..." + (show)
@lilypilly

Yes please. I too am intereted.
Itbhas been 8 montjs post treatment and i am unable to eat a d awollow solid food. My speech is completely off. I do weekly Lymphatic massages with a therapist Md my own at home. However it does not seem to be getting better. ANY helpor advice will be amazing!
Thank.you.

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For me, the self message wasn't effective. I was proscribed a Flexitouch Plus, which I still use.

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1 reply
lilypilly | @lilypilly | May 24 7:21pm
In reply to @stephenrfleury "For me, the self message wasn't effective. I was proscribed a Flexitouch Plus, which I still..." + (show)
@stephenrfleury

For me, the self message wasn't effective. I was proscribed a Flexitouch Plus, which I still use.

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Sadly I am in Canada and I will need a Dr script from a US doctor as well as a US address. As per the manufacturer.

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lilypilly | @lilypilly | May 24 7:23pm
In reply to @roblem "Have you tried getting a speech/swallowing therapist for head & neck cancer?" + (show)
@roblem

Have you tried getting a speech/swallowing therapist for head & neck cancer?

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Yes she is wonderful.but I just keep hearing it takes time. Be patient....it will change. I am at my 1 year mark and minimal changes.

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56tburd | @56tburd | May 25 7:49am
In reply to @jmcates11 "What is BP?" + (show)
@jmcates11

What is BP?

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Blood pressure.

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stephenrfleury | @stephenrfleury | May 25 9:22am
In reply to @lilypilly "Yes please. I too am intereted. Itbhas been 8 montjs post treatment and i am unable..." + (show)
@lilypilly

Yes please. I too am intereted.
Itbhas been 8 montjs post treatment and i am unable to eat a d awollow solid food. My speech is completely off. I do weekly Lymphatic massages with a therapist Md my own at home. However it does not seem to be getting better. ANY helpor advice will be amazing!
Thank.you.

Jump to this post

I would check with your care team and see if it would help your issues.

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