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#195353 - 11/08/17 02:24 AM Radiation fibrosis syndrome  
Joined: Jul 2009
Posts: 1,387
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,387
Los Angeles
Hello everyone - well, after a few (3-4) years of progressing peripheral polyneuropathy, which for me manifested mainly in the hands and arms, I've finally received the official diagnosis of Radiation Fibrosis Syndrome. In the beginning it was mainly numbness and tingling beginning in my thumb and first 2 fingers and then spreading outward over several years to my forearms, upper arms and even into the middle of my back. I describe the tingling as the feeling you get when your arm has fallen asleep in the night and is about halfway back to full feeling. Not painful (thankfully) but not pleasant.

But in the last year or year and a half I also started experiencing weakness in my left arm. That's where my lymph node tumors were and where the neck dissection took place. I can also assume that more rads were directed to that side than to the right.

So I found some new doctors and had electroconductive tests and and MRI done, and this is the result.

I'm wondering what other members of our family are experiencing symptoms like mine, and if so have you found any good ways to deal with it. I know there's no cure, and I'm working out 3 times a week at the gym to try and keep my muscles operational. And I walk a lot.

Many thanks, folks. I hope everyone is hanging in!


PS yes, I've read all the relevent posts here at the forum that I could find, as well as the link to the Cancer Network article by the physician (I think it was that site). I've also looked at several of Dr. Michael Stubblefield's pieces on YouTube. He's the Sloan-Kettering post-cancer treatment specialist.

David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 9 years all clear in 6/18 | Prostate cancer diagnosis 10/18
#195368 - 11/10/17 02:12 PM Re: Radiation fibrosis syndrome [Re: David2]  
Joined: Jul 2012
Posts: 3,117
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,117
I have radiation fibrosis syndrome, although many of my doctors don't use that term, and instead, say fibrosis caused by radiation or other medical conditions. .

I don't link all my polyneuropathy in the hands, legs and feet due to radiation since I had it after chemo, and before starting radiation, but others I do such as the osteoradionecrosis that required jaw replacement, brachial Plexopathy, which paralyzed my left arm, the fibrotic neck tissue as we call "leather neck", which necessitated calf skin paddle to close the neck after my last surgery, sensation loss, and complete shrinkage of the trapezoid muscle was mainly due to the radical neck dissection, but the excess radiation, over 200Gy, didn't help matters, so my left neck, shoulder and back area are complete bone as atrophy does follow the fibrosis, and is effecting my hands too, mainly left where most my radiation, and all surgeries were, and have carpel and cubital tunnel syndrome.

Another issue is after long standing or sitting without back support, my neck starts burning, pulling, and head drops down. They call that head drop believe it or not. I have read literature suggesting a neck collar to wear when doing certain tasks for energy conservation. When I mention "drop head" to some of my non cancer doctors they laugh, thinking I'm joking around, so it's not fully recognized or understood by many doctors.

As you know RFS is lifelong, and not much can be done, but physical therapy is strongly advocated, and some select treatments. I found most PT to be disappointing, and fitting them in my schedule with other dr visits and blood tests is a hassle, and tiring as I don't drive anymore. I plan on doing my own PT, such as weight lifting , stretching, maybe learns few Myofascial release and Lymphdemia massage techniques, and start yoga and thai chi. I hope to get in the pool one day, but walking right now, not far either, maybe 100 yards before I need to rest and go back, but you gotta start somewhere, and I used to be a gym rat most my life around 250lbs.

I did require prescription from pain management for oxycodone to get started after my most recent back pain, which I found out after testing to be from arthritis, stenosis, a few disk herniation, and others in the lower back. A neurologist mentioned cabol injection, but I'm not doing that right now. I already take gabapentin, very minimal dosage then I'm really supposed too.

That's basically what I'm trying to do like you, keep active, but I also have to be careful since I developed osteoporosis in the hip.

10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent

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