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Radiation and Muscle atrophy HELP

mkurtzhals
Posts: 7
Joined: Feb 2006

I had childhood hodgekins and had radiation on my right arm. Now it is considerably smaller and weaker. I have tried lifting for many years but cannot get it to grow. Does anyone have any resources or ideas what i can do. I really hope there is something i can do to fix this as it is half the size of my left arm. HELP>

JM88's picture
JM88
Posts: 1
Joined: Feb 2012

I have the same question. After a childhood bout with Hod. Disease....I have been looking for treatments for muscle atrophy. I am a workout nut and yet nothing works.

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

There is a pysiatrist who specializes in Radiation Fibrosis Syndrome at Memorial Sloan Kettering Cancer Center in NYC. I have seen him and have gone through Physical Therapy to address these issues. There is no cure but supposedly you can slow the progression.
Cathy
HD 1989 - Rads
HD 1994 - ABVD
IDC - DBL MX

cathymom
Posts: 3
Joined: Mar 2012

I had Hodgkins w/radiation in 1980 at 13. Among a list of other side effect issues, my muscles in my neck and shoulders have atrophied. Are you serious about nothing working? I was holding out hope that weight training would help! How are you doing today?

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

According to the specialist I saw, you can slow the progression with physical therapy, but there is no cure. The therapy has helped with my posture but I constantly have to remind myself to fight the tight fibrotic muscles rounding my shoulders in. Also, I reluctantly agreed to start a low dose of Lyrica and that has helped with the headaches, neck pain and soreness, numbness and tingling in my arms. I'm not sure, but you may want to be advised by someone familiar with radiation fibrosis syndrome to be instructed on weight training, so you avoid any potential damage. I think it must help to stay active. I try to do a lot of yard work, etc to keep everything in working shape!
Best of luck to you!
Cathy

cjk22
Posts: 2
Joined: Nov 2012

Cathy after I do yard work stand at the counter to cook etc I am in so much more pain and just plain miserable. How do you cope with that.
I just joined today. How can I read about what you went through? When did you find out you had a muscle deterioration?

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi cjk22.

Regarding coping with pain after activity, I just did a number on my body. I was doing yard work again and it really affected my torso, ribs,with many many miserable symptoms. I was using a sickle and I guess the twisting motions I was doing was too much for me. It took me 5 weeks to get over it all. I stopped taking Lyrica in April of this year so I didn't use any medication for the pain. I did take OTC anti inflammatory a couple of times and used ice and a heating pad.I had some sleepless nights. Then, I did some heavy yard work again and paid for it with neck and back spasms and pain. Again, I'm just waiting it out to resolve. Just reaching the wrong way or sleeping the wrong way brings on symptoms, then they resolve and I'm fine. Other times, I need to wear my headmaster collar to give my neck a rest. Recovering from these activites takes us much longer than "normal" patients! I should mention, I had thoracic surgery for my biopsy in 1989, radiation treatments and a double mastectomy in 2008 so my torso has really been through a lot.

The doc at MSKCC documented my muscle deterioration. My other doctors were able to see this also. It is obvious by just looking at my neck, back and chest. I see a Adult Long Term Follow-up Specialist at MSKCC who referred me to Dr Stubblefield. You can go to MSKCC website and watch videos by Dr Stubbefield who addresses Radiation Fibrosis Syndrome.
If you have any other questions, I would be happy to try to help.
All the best,
Cathy

Gmacmi8016
Posts: 1
Joined: Jan 2013

I just joined tonight.  I had rad treatment for hodgkins 28 yrs ago at age 20.  Lower jaw to waste lins.  Lead shields for lungs, heart, and thyroid.  I take Synthroid and Nexium.  Nexium for GERD.  I've always been physical but have known for years my neck and shoulder muscles do not develop well.  My thing is I mentioned this to both my oncologist doctors and general practice and no one ever bother to mention what was to come.  As I'm sure everyone her knows the medical system is great for emergencies but stinks for long term care and knowledge.

So nerves and blood vessels have been damaged   Fibrosis sets in.  Late last year my left arm interior bicep tendon decided it had enough and let lose basically rolling up like a shutter.  Actually I.ve learned that top athletes have shoulder surgery to cut the tendon to reduce pain with little loss of strength.  A few months later during bench press my right arm makes a large snap.  Nothing broken...yet.  

Ive read the Hyperbaric Oxygen Therapy (HBOT) helps to get oxygen to the muscles.  I wonder about the use of electrical stimulus by using a TENS unit.  I'm going to try it.  My right shoulder muscles are severely atrophied.  Much has filled in with fat.  I'm going to see about surgery to secure the tendons so I can continue to workout.  Is ther any gene Therapy or Stem cell?  I continue to lift and workout and will do so for as long as possible.

 

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

It sounds great that you are trying to remain active and do what you have always done.  Unfortunately, there may come a time when we have to alter our activity levels to manage the radiation fibrosis.  It may be beneficial to review your activity level anf type of activity with someone who undersands the impact radiation has on our bodies years later. At some point you may do more harm than good if you don't accomodate for this. 

Unfortunately, many primary care doctors as well as oncologists and radiation onclogist are unaware of radiation and chemo possible long term effects.  I almost can't blame my oncologist as he needs to stay on top of emerging treatments for current cancer patients.  Three years ago I added an Adult Long Term follow-up specialist and changed my PCP.  The new PCP works with the specialist closely to maintain my health and stay on top of LT Effects. 

So it may be helpful to change your work outs to be the most benficial without doing any harm.

Cathy HD 1989 - RADS   HD -1994 - ABVD    IBC - DBL MX

 

mkurtzhals
Posts: 7
Joined: Feb 2006

Any Luck with the HBOT or the TENS unit?  I have tried many doctors but really never made it anywhere.  I am not sure if my bones were damaged also thus make the muscle smaller since this happened when I was only 5 years old.  So basically my right arm/shoulder is that of a 5 year old and left is normal.  Any help on this would be great

mkurtzhals
Posts: 7
Joined: Feb 2006

Any Luck with the HBOT or the TENS unit?  I have tried many doctors but really never made it anywhere.  I am not sure if my bones were damaged also thus make the muscle smaller since this happened when I was only 5 years old.  So basically my right arm/shoulder is that of a 5 year old and left is normal.  Any help on this would be great

sherry84
Posts: 16
Joined: Jan 2013

Hi CathyP,

     I am a 29 year survivor of Hodgkin's Disease. I've experienced many of the delayed side effects from the treatment which include thyroid, radiation induced colitis, heart disease (quadruple bypass and aortic valve replacement) and radiation fibrosis.

Right now, my biggest problem seems to be the fibrosis. I am seen by a specialist at the same clinic at MSKCC and the same Dr for rehab.I went for physical therapy there for a few months and was fortunate to have an excellent PT who helped with not just the fibrosis but other back issues I was having at the time. It has made me very aware of my posture which is very important but has not helped with the pain I have from the condition. Currently, I have been seeing a medical massage therapist who does provide some relief but only for a short while. It was suggested that I try the Lyrica with oxycodone but I have resisted. I noticed you had been reluctant as well to try it but did for a while and then discontinued it shortly after. I guess my question would be why you decided to try it and why did you stop it. My concern is that I tend to have nasty side effects from many drugs and don't want to trade one problem for another. I also have to be careful what I take because of the meds I take for the heart. Just to add, I do use Lidoderm patches when I am in serious pain which helps but only on the areas that it covers. Even so, I'm grateful to have them. I look forward to any input on this topic.

Many Thanks, Sherry

 

Cancer normal
Posts: 3
Joined: Feb 2013

I know what you are talking about. There is a doctor, Dr. Stubblefield @ Memorial Sloan Kettering Cancer CenterThe has written the textbook on this. Ig you go to YouTube.com do a search for radiation fibrosis an dither doctor's name ( you can find it at the MSKCC website too. I strongly believe that there should be much better access to the medical care we need as long term a survivors. I am on a mission to make that happen. I am alive today because I am lucky enough to be part of a cancer rehabilitation center.  There are more than 14 million of us. 

Cancer normal
Posts: 3
Joined: Feb 2013

I know what you are talking about. There is a doctor, Dr. Stubblefield @ Memorial Sloan Kettering Cancer CenterThe has written the textbook on this. Ig you go to YouTube.com do a search for radiation fibrosis an dither doctor's name ( you can find it at the MSKCC website too. I strongly believe that there should be much better access to the medical care we need as long term a survivors. I am on a mission to make that happen. I am alive today because I am lucky enough to be part of a cancer rehabilitation center.  There are more than 14 million of us. 

Cancer normal
Posts: 3
Joined: Feb 2013

I know what you are talking about. There is a doctor, Dr. Stubblefield @ Memorial Sloan Kettering Cancer CenterThe has written the textbook on this. Ig you go to YouTube.com do a search for radiation fibrosis an dither doctor's name ( you can find it at the MSKCC website too. I strongly believe that there should be much better access to the medical care we need as long term a survivors. I am on a mission to make that happen. I am alive today because I am lucky enough to be part of a cancer rehabilitation center.  There are more than 14 million of us. 

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Yes, this is the doctor I see for RFS.  If you access Memorial Sloan Kettering Cancer Center Website, you will find these videos as well as videos from the Adult Long Term Follow Up Specialist.

Valjo06
Posts: 17
Joined: Nov 2011

I am a 33 year survivor of Hodgkins.  Had radiation from chin down to groin.  I noticed little things at first in the first 20 years, but then in the last 10 years alot has been changing.  Md and pts, etc., they notice that I have NO muscle behing my right shoulder blade that took the brunt of the radiation.  that is the weakest arm.  I have tried to build up muscle, but with no luck. I cannot use my arms above my head for but a couple of minutes before they completely go numb.    I live in Illinois and have checked here and in Missouri.  We don't have any specialists that deal with LT radiation damage.  I have talked to Wash Uni hospital and they say there's just not enough doctors that study the long term.  I have checked into Stubblefield that I believe "kathy" on this website recommends, but as you all know, it would be a costly trip and my insurance won't cover alot of the medical expenses.  The symptoms I have in my arms AND legs are numbness, tingling, burning, pinching.  Sometimes I will be at my desk and I feel like an electrical current run thru shoulder and like it's "zapping" and breaking loose, the nerve fibers.  Very strange.  I just keep up with daily exercise and yoga.  Yoga seems to calm me. I have just started HOT yoga. It's hard to get used to all that heat, but once you do it, I do feel great when I'm done.  GERD is horrible at times. I stay on a daily acid reflux meds; have done all the drugs, as in lyrica, antidepressants, etc., anything for nerve endings.  Nothing lasts more than a couple of weeks.  I do have heart issues also, nothing serious for the time being.  I am on Metropolol for SVT; and the cardio just recently told me to see him every 6 months for an echo ultrasound; he cannot ignore the fact that radiation does do damage and needs to make sure it hasn't damaged anything in the heart.  Every once in awhile you'll get a doc who knows rads do horrible damage and will keep an "eye" on you. 

I am thankful I am alive and have had a wonderful life with family and children.  It's just frustrating sometime to have all these symptoms when you work hard to try and beat them; but again, we know what damage the radiation can do and will do.  I'm Alive; Thank God for that.  I wish you all a blessed wonderful day.

 

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Valjo06,

Great to hear of your 33 years of survivorship.  Glad to hear some of your doctors are recognizing the late effects from treatment. 

It's wonderful you can do hot yoga.  My nurses have been telling me survivors are getting good results with pilates and yoga.  If we don't have access to specialized PT tx's because of cost or location, my LT folllow up Specialist incourages us to find what works for us, like pilates etc.  One of the keys is to strenghten our core muscles. 

GERD, ugggg.  I've been struggling with this a lot lately.  Something I hear from our fellow survivors.

Anyway, I wanted to provide you a link that will list all the survivorship clinics.  You can enter a state and/or city or view them all: http://applications.childrensoncologygroup.org/Surveys/lateEffects/lateEffects.PublicSearch.asp                    From here you can go to the clinics website.  Some may say you had to be under 21 at the time of treatment to "qualify" to be followed there.  If you were over 21, don't let this discourage you, still contact them.  When I called one of these and said I was 29 at the time of dx and tx, they still took me as a patient. 

You sound like most of the long term survivors I know ( and like me).  We go back and forth between gratitude for our survivorship and frustration and fear of living with the efects from our treatments.  When I started with my LT Survivor Clinic, I found that I could leave some of the worry to them.

Best wishes!

Cathy

Valjo06
Posts: 17
Joined: Nov 2011

Thanks Cathy.  I appreciate all your posts on this website.  You're awesome.  :)  You've given lots of helpful tips with the LT clinics.  And I WAS 21 the day they told me I had stage 2 Hodgkins.  I will def check into.  Glad also you know about the pilates and yoga.  I've always been an anxious no patience girl, and after all these years, had I known yoga would slow me down, I would have done it 30 plus years ago.  LOL.  I forgot to mention yesterday that I also have neuropathy really bad and especially in legs and feet.  My feet always feel like they're in an ice bucket; and it got worse when I had to have spinal fusion in 2003 and 2006 (it blew out in 2006, needed to be redone).  Neurosurgeon thinks the damage to muscles from radiation caused it not to hold. When he went in and cut thru my muscles to get to do fusion, he said people that have had radiation, their muscles are like a tough piece of wood, not easy tissue and soft, so it's harder work for them.   So far so good since then, he "superglued" it with a new procedure at that time.  Again Cathy, thanks and have a wonderful weekend. 

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Valjo06!

Good to hear your following the survivor journey!  Sorry to hear you haven't escaped some of the late effects.  Good luck finding a specialist at a LT Clinic. 

I admire how you are keeping active!  Keep it up.

Take Care,

Cathy

sherry84
Posts: 16
Joined: Jan 2013

I am new to this site (my 1st post was here on the 15th) but not new to cancer survivorship. I see Dr Stubblefield too and have gone for PT, tried the nerve block injections,(didn't work and hurt terribly for 2 weeks) and have a head master which I am just starting to use now when I have to sit in one position for longer then a few minutes. I have to be careful though because I have TMJ and the headmaster in the past has inflamed the TMJ. I  don't take any medicine currently for the fibrosis other then occasional tylenol and as of now have been offered but not consented to taking the meds. Lyrica seems to be the main med highly suggested.

I have just had my appointment with the Dr and once again turned down the med though I'm wondering since the pain is getting worse, maybe I should give it a shot. My question is, has anyone tried Lyrica or any other med for this condition and what their experience was. I have been on the fence about this for the longest time and wonder if I am worrying needlessly. I will be seeing the Dr again in 3 months so any input would be a great help in making a decision.

Thanks, Sherry

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Sherry,

I turned down the meds for awhile too.  After a rough patch with severe pain and headaches, I gave in.  I was doing Lyrica 25, 25 then 50 before bed.  I felt wonderful but after 2 mos I started with severe stomach bloating.  Now you would think that isn't a bad side effect, well I could not stand it it was so uncomfortable and painful in it's own way.  I titrated off in 1 week and was worried the headaches would come back.  They didn't and tha pain was gone.  I think I had injured myself during pt and that was causing the severe pain and headaches confirmed by a cervical CT.  So for the 2 mos I was on Lyrica, I wasn't doing anything physical and the disc must have resolved.  Anyway, by then the radiation fibrosis syndrome symptoms have been tolerable (if I don't over do it) so no more meds. 

Good luck with your decision.  Perhaps you can start out with a minimal dose and you'll have good luck with it.  I know Dr S doesn't like to see us suffer when there is a med that may help.

Cathy

Valjo06
Posts: 17
Joined: Nov 2011

My experience with Lyrica......  I have neuropathy/fibrosis from the rad damage in 1980.  It gets worse each year.  I don't do "drugs" well; but am always willing to try them.  With Lyrica, neurologist put me on it (after trying cymbalta, neurotin, and others....these I didn't response well too, cymbalta was horrible, almost passed out in bathroom, doc pulled me off it). I was  started with low doses of Lyrica, 50 mgs. Took for three weeks, and it stopped working, so he upped me to 75 mgs, took another three weeks, stopped working, when he upped it to 150 mgs, I called it quits.  The drugs mask the problem, don't take care of it; but I was willing to try but everytime I started a new dosage, I would be so sleeping for the first two weeks.  150 mgs was just too high for me to consider when the other two worked for three weeks and I was taking them twice a day.  Each person is different though and you will have to decide for yourself what you want to do.  Again, just my experience with it. I do know some people have good luck; as I have a friend who has good luck with neurotin.  Good luck, enjoy the day. 

sherry84
Posts: 16
Joined: Jan 2013

Thank you both for sharing your experiences. It's makes a difference to hear from other survivors who have been going down a similiar road. I know there is no cure for this condition and it will only get worse. It has already started. The medical massage while somewhat helpful is not providing as much relief as it did a year ago. Even though she handles me with kit gloves, if she goes in even slightly too deep, then I am in misery. Thankfully this rarely happens. Still, I do feel somewhat better and can stand straighter right after I see her.

Along with the muscle loss and weakness, it feels like I have a rock on the left side of my neck and a rock in the middle right side of my back. The pain in the back actually started about 18 yrs ago when I fell down the stairs in my home. I held on to the banister tight so to not injure my lower back by slipping down the stairs, but instead, I kept falling and my rt arm was yanked back. No matter how often I went to the chiropractor, I never really healed and couldn't understand why. I have since stopped going. Then the pain in the back escalated again right after 2003 when I had heart surgery. I needed an aortic valve replacement and a quad bypass. When they do the surgery, the back is put in such an unnatural position. Many people will have stiffness and some pain for a while. It wasn't until the RF diganosis that it all made perfect sense. I was radiated from the tip of my chin to the bottom of my diaphram back in '84 along with chemo, TBV (Thiotepa, Bleo and Velban).

When I see the Dr again in June, I will see how I am on the pain scale. If I am worse then I am now, I'll probably give a low dose a try as long as I know I can get off it quickly.  I appreciate all your input.

CathyP: I agree, Dr S is very compassionate and only wants to help us with pain. He is also honest about what he can & cannot offer which is refreshing.

Valjo: Congrats on 33 years. I'm up to 29 this year.

Thanks,

Take care, Sherry

 

Markus1985
Posts: 1
Joined: May 2013

New to site.  Same story, Hodgkins at 25(1985) now heart probs. and muscle loss. Anyone ever try body building suppliments or even steroids? 

 

Mark

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Mark,

I would research and consult with specialists (long term survivor specialists) regarding supplements and steroids.  Our bodies have forever been damaged by radiation and or chemo.  I'm thinking supplements and steroids would add to that mess and not necessarily help.  With our heart problems would steroids be an option you would want to consider? I believe use of steroids could further weaken our damaged hearts. Dr S who is an expert in this subject advocates specialized physical therapy to slow the progression of RFS as there is no cure. 

Good Luck Mark with your survivorship!

Cathy

jocko3
Posts: 1
Joined: Dec 2012

Greetings-

My first post, having just found site and relaxing enough to type.  My experience was radiation in '74, upper mantle down to upper abdomen.  The muscle wasting started being obvious about 4 years ago, with no physicians in town being able to comment, as their experience hasn't touched long term survivors.  My orthopedist did give me some PT time, which did help.  Since then I have been continuing my low key yoga (a teacher my age or older is a key, to avoid injuries, and of course, my judgement), but have also added very low weight machine work on the various muscels or what is left of them.  That too seems to help, 3 times /week.  If I stop for any length of time (like for other issues such as aortic valve replacement, and double bypass), then I am back to almost zero on muscle mass.

And I try to go for a walk of about 1-2 miles in the woods for cardio health and sanity.

Bottom line, I've been exceedingly lucky, able to deal with the muscle wasting with just variations on PT.

-jocko3

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