Hi charm glad you're doing well ! I too have found that exercise - particularly stretching really helps - as does yoga and acupuncture. Yoga relaxes you- increases blood flow and stretches those muscles, acupuncture really loosens the area up because it draws blood into the area helping the tissues heal. My neck is always tight in th morning but after moving around for a bit. - including stretching it - it's good! The deep breathing of yoga O2 perfusion), stretching, (regularly) and acupuncture all help with healing, massage also helps as it increases circulation. This is why that article on rehab is so good - all these combined things truly help. I would go for physio once a week - have them tweak my program - once a month - and do my exercises at home daily several times... But I am always stretching my neck! the only really tight spot now is along my scar... But even that has loosened.Take care - hopefully you will find something that works for you. The sad thing is everyone's different - there's no set way of dealing with this. Hugs!

I had seen that article about vitamin E and pentoxifylline some time back, and I also was aware about vitamin E's link to cancer, at least when taking artificially high amounts. But, Charm, I think your main argument is that radiation fibrosis may be somewhat overcome, reversed if you will, and the study does point to that conclusion, EVEN if vitamin E has since been proven to be carcinogenic when taken in that way.

Lymphedema massage might be viewed as either worthless or next to it by a number of persons not only on this forum but medical personnel in the cancer field. Probably it is not recommended often enough by doctors, and that may be why.
I decided I would give it a try because I felt it was harmless enough and sounded easy to do. The lymphedema specialists I consulted believed that it helped prevent fibrosis because it increased circulation. My recent check up showed that I had eliminated all the lymphedema I had two months ago. Where I had some pitting then, now I have no swelling, just skin. Actually my surgical oncologist was surprised. I was too.
Yes, lymphedema can come back, but all I have to do now is maintain it. How can increased circulation, improved by exercise, massage, accupunture, or a combination be a bad thing for a damaged area? I don't think it can.
I like reading about what you have accomplished with your exercise despite having two separate radiation therapies over some of the same area. Very encouraging I would say. Thanks for sharing.
Anne

Anne

Thanks for explicating my point. One of the nice things about OCF is that people usually disagree without being disagreeable. (although I have not been a shining exemplar of that)
Exercise and physical therapy has worked to significantly reduce my original horrendous radiation induced fibrosis.
Other pieces of the puzzle of RIF are the concurrent subdermal adhesions that form which can indeed be broken up by exercise. I think this thread just highlights the lack of medical attention on helping patients thrive instead of just survive as I've posted in other threads.
Keep the Faith
Charm

Gary

Yep, I posted a study from Washington Post and Wall St Journal showing that Vitamin E increases prostate cancer. Males of a certain age such as ourselves are probably not appropriate candidates for Vitamin E treatments. But since the original poster was female, I didn't think it was relevant to her concerns. As you noted, I'm lucky that exercise combining strength and stretching has worked for me. My progress is not optimal but acceptable.
keep the Faith
Charm

I would hope that they would come up with some type of targeted therapy and do away with "slash, poison and burn".

Strangely after going almost 2 weeks without neck muscle spasms this week has been very bad. It can even start up when my head is relaxed on a pillow. Thank God for Valium - its the only thing that will mitigate it. I also have Codeine for when it gets really unbearable...

Gary

Yep, as long as those "targeted" therapies actually work. I'm pretty skeptical now especially with the new findings on Erbitux and Brian's post about our cancer being "smarter" than the developers of these targeted therapies thought.
I'm sorry to hear about those muscle spasms. My best friend in law school had the nickname: Prince Valium (a riff on the comic strip; Prince Valiant). Glad it works for you but wish you didn't have this complication.
Charm

Ok I finally had time to study the article. Evidently it was done on breast cancer patients, with the disclaimer that much additional research was needed.

It's comparing apples and oranges. The head and neck area is much more complex and corresponding anatomy more tightly packed. There are limited access points for radiation due to the proximity of the spinal cord, thyroid, salivary glands and other radiation sensitive anatomical structures. This would result in very high dose rates through those "safe" corridors. And there have been studies done about different dose rates through different structures and what permissible maximums are allowed. How else would they program IMRT? This also serves to further demonstrate the uniqueness of each of our individual treatment plans.

You may wish to glance at this .pdf so as to understand the unique complexities of H&N RT (or just RT in general).
http://www-naweb.iaea.org/nahu/dmrp/pdf_files/Chapter8.pdf

This link is a pretty definitive study on general principles of radiation therapy in the H&N context. http://emedicine.medscape.com/article/846797-overview

I had severe problems with pain while yawning early post Tx (which eventually withered) but the muscle spasm issues didn't really get going until I was 2 years post Tx.

Gary,
Your pdf on the complexities of RT is too heavy for me to read this afternoon, or perhaps I am just getting lazy, certainly impatient. You are obviously a smart guy so I will just take your word on it. The study you read about (breast cancer) I believe included H & N in phase II and earlier, with improvements noted there as well, but perhaps they thought there were more dramatic results for breast cancer so limited the finale to those patients. I just read they noted improvements in the neck structures in prior studies.

It seems to me there is little time spent on researching this issue. I did have this article bookmarked which is a fairly good summary on the topic:

http://jpkc.fimmu.com/fszlx/3-6/13Late%20radiation-related%20fibrosis%20pathogenesis,%20manifestations%20and%20current%20management.pdf

It includes head and neck. It is dated 2003, which doesn't make it cutting edge, but again, not much time is spent on this issue.
I had seen the medscape article.

Best,
Anne

Gary
The good sisters probably forced too much math onto me, but that pdf doesn't sway my opinions expressed in my posts at all. What it did do, is make me very grateful that my RO was able to do that math so my RIF is amenable to exercise and stretching. I wanted to drop him at first but my MO stressed that this RO was unexcelled in mapping out the radiation field despite his issue with patient relations. Your pdf validated my decision to stick with him. Thanks.
What your post also did was confirm our agreement on how our individual TX determine our recovery and problems. I can't help but think that if TORS were commonplace three years earlier, I could be eating and drinking instead of living my life with a G tube. I lucked out on RIF at least.
I think we all can agree that much more consideration needs to be given to this issue of radiation induced fibrosis.
My neck hurts every day yet it seems like I'm supposed to accept this as simply part of the new normal. I do, but it is so good to hear voices like yours.
Keep up the good work brother
Charm

Charm,
We all need and probably do luck out on some aspect of our medical care/results. I'm going to remember that when I get to feeling sorry for myself, as a member of two cancer forums in one year. So that's what your post did for me. Thanks!

I also thought, Gary, when I looked at that pdf that I am so grateful that we have had RO's who know their stuff. I know I did as well, he thought of everything and was well seasoned but also up to date.
Anne