Radiation and Muscle atrophy HELP

JM88 said:

same thing
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.

RFS
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 said:

neck and shoulder muscle atrophy from radiation
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?

According to the specialist
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 said:

muscle deterioration
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?

Hi cjk22.
Regarding coping
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 said:

Hodgkins w/ 6 weeks rad. 28 yrs ago.

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.

 

It sounds great that you are

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

 

Radiation fibrosis

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 said:

Radiation fibrosis

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. 

Yes, this is the doctor I see

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 said:

Rad and Muscle atrophy also

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.

 

Link to Survivorship Clinics near you

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

cathyp said:

Hi cjk22.
Regarding coping
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

Hi CathyP,
     I am a 29

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

 

cathyp said:

Hi Valjo06!
Good to hear your

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

Radiation Fibrosis

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

sherry84 said:

Radiation Fibrosis

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

Hi Sherry,
I turned down the

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