Treatment for long term radiation fibrosis

Posted by taylorma @taylorma, May 1 7:56am

I has been 16 years after my radiation treatments from head neck cancer. I have stiffened fibrosis in right side of neck. I was reading about a study with Pravastatin (Pravacur) and Protocol treatment for late stage fibrosis treatment. Has anybody tried this and had ANY symptoms improvement?

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sandy8043 | @sandy8043 | May 12 8:26am

Kelli at Cancerrehabpt.com has a new YouTube out on fibrosis. Here is,the link.

She has a number of videos on her YouTube channel as,well as a lot of info on her website...cancerrehabpt.com

mwpcaretaker | @mwpcaretaker | May 13 8:21am

In reply to @mojo244 "@mwpcaretaker We are in Idaho. Did your husband get onboard with the class action lawsuit against..." + (show)

@mojo244 yes to everything. He was notified around 2010 or 11 via mail from the committee involved in that research about what was going on there and we've been involved since 2013.
Prefer not discussing that mess on this message board (but he will talk privately with anyone about this). Unless you have something on the presumptive list or on the Track 1 bellwether, it's a long journey - has been for us.

linda90 | @linda90 | May 13 8:53am

Good afternoon…. Don’t know if I am experiencing fibrosis as well but my neck is stiff or have pain when moving of which the pain is a bit sharp on the side where I had a tonsil surgery and a high dose of radiation. What should I try to remedy this issue? I tried using a deep heat to massage three times a day.

sandy8043 | @sandy8043 | May 13 8:30pm

In reply to @linda90 "Good afternoon…. Don’t know if I am experiencing fibrosis as well but my neck is stiff..." + (show)

@linda90 I'm going to try red light therapy. There are others on this forum that use it and report good results.

linda90 | @linda90 | May 14 2:38am

Where can I get the red therapy?

sandy8043 | @sandy8043 | May 14 6:53am

In reply to @linda90 "Where can I get the red therapy?" + (show)

@linda90 I bought this one on Amazon. It will come today. Others have used different devices.
Limited-time deal: Handheld Red Light Therapy with Stand-Near Infrared Light Therapy Device, Cold Therapy Device Pain Relief for Joints & Muscles (4 x 808nm + 14 x 650nm) https://a.co/d/0j7TzrJ9

mwpcaretaker | @mwpcaretaker | May 14 11:28am

Haven't heard of this - will be following and will ask doctor at next appointment.

smittyfromcuse | @smittyfromcuse | May 14 11:54am

In reply to @mwpcaretaker "Haven't heard of this - will be following and will ask doctor at next appointment." + (show)

@mwpcaretaker I started red light therapy on my own and it seems to be helping. I see my Radiologist Monday for a bi-annual check in and will get his opinion and repost here.

Sue, Volunteer Mentor | @sepdvm | May 15 9:46am

In reply to @sandy8043 "@linda90 I bought this one on Amazon. It will come today. Others have used different devices...." + (show)

@sandy8043 I missed your previous question, but the device I started with is no longer available. The Willow Curve which we had here for treating knee pain. It was helping my neck muscle atrophy and stiffness but being a rigid curved design it was hard to use on my face so I then purchased a HigherDose face mask. It offers the higher wavelengths of red light, as does the device you are purchasing. I have used this for 2 weeks now so time will tell if it is effective enough.

Colleen Young, Connect Director | @colleenyoung | May 15 4:21pm

@taylorma, I found this journal article about a phase 2 study from 2019.
- Pravastatin Reverses Established Radiation-Induced Cutaneous and Subcutaneous Fibrosis in Patients With Head and Neck Cancer: Results of the Biology-Driven Phase 2 Clinical Trial Pravacur https://www.sciencedirect.com/science/article/abs/pii/S0360301619302500

I didn't find any published results or recruitment calls for a phase 3 trial. Did you? Have you asked your oncologist about it?

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