Radiation and Muscle atrophy HELP

sherry84 said:

Hi Valjo06 & cathyp

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

 

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 said:

Mark,
I would research and

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

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

Heather Ford said:

Bone and muscle wasting

I'm glad I found this site, as I am 40 years past treatment for rhabdomyosarcoma of my neck...I had 4000 rads of radiation to my neck, jaw, and upper shoulder area as an infant.  The past year I have started to notice significant atrophy of my jaw and the muscles of my face and what muscles were left in my treated neck area (one of them was removed during surgery for the cancer).  I figured it was from the radiation, but it is good to know I am not the only one experiencing this late-stage atrophy.  I have to admit it is a bit unsettling, as my face is becoming a fair amount asymmetric.  I've been able to deal with the neck scarring all my life but the facial changes do bother me.  I try to view them as my battle scars but at times it does really bum me out!  I hope to live many decades more, so I hope these significant changes I've noticed the past 1-2 years don't progress much more.  My neck gets quite sore from the muscle wasting as well, I figure at some point I'll have to start doing some PT to help build up what little muscle I have left.  I have all sorts of special pillows for sleeping to support my neck, as sleeping causes me the most problems with neck pain.

I suppose there isn't much out there to treat this issue but I am relieved to know I am not the only one experiencing it!  Power vibes to all fellow long-term survivors out there!  We are not such a rare breed anymore, thank goodness!

Do you have access to a major cancer treatment center (examples include UCSF Medical Center, MC Anderson, Memorial-Sloan Kettering Cancer Center, there are many others)?  They would have the most expertise in how to help you. Please don't live in pain.

GracieD said:

Muscle Wasting and Neuropathy

I'm 29 years out since my treatment for high grade synovial sarcoma in my right pelvic area.   I was treated at the Natinoal Cancer Institute, Bethesda, MD.  8 surgeries in 6 years and 5600 rads of radiation.   2 years ago I began having numbness in my right thigh and notice muscle wasting.    After several trips to UPMC in Pittsburgh it was determined that I had late on-set radiation induced lumbar plexopathy.   I began PT to slow the process.   In June 2013 I found Dr. Michael Stubblefield at Memorial Sloan Kettering in New York City.   He is a physiatrist and works with rehabilitation of cancer patients and has done a lot of research on radiation damage.   Dr. Stubblefield ordered a leg brace as my knee would buckle due to the wasting of my quad muscles.   In June of 2014 he suggested I meet with a doctor at the Hospital for Special Surgeries to see if I would be a candidate for a nerve transfer.   Dr. Stubblefield performed an EMG Nerve Conduction study and determined that the radiation damage was too extensive for the nerve transfer.   We are now in pain management mode and I am taking  300 mg 3 times a day of Gabapentin for nerve pain and 4mg Tizanidine HCL at bedtime for muscle spasms.   I continue with PT (aqua therapy) as well.   I will return to NYC to see Dr. Stubblefield in early January 2015.   If anyone knows of anything else out there, I would love to know about it.

  

 

I am 29 years out from Hodgkins.  Treated with cobalt full body radiation.  I'm cured of cancer but I have had many issues as a result.  I feel the medical community failed me.  I just found out about this condition a couple of months ago from posting on Whatnext.  Dr. Stubbefield has trained 6 or 8 other doctors.  I see Dr Pearce in West Palm Beach.  There is also a survivorship program @ Dana Farber Cancer Institute in Boston.  I have been accepted there and I am in the process to go there. I keep seeking a better quality of life.

I posted on here a few years ago and I don't think I have been back since. I wish I would have checked back in. There are so many of you that I can relate to. When I figured out on my own what was wrong with me I felt so alone. I think I got on this site in 2011 at that time. I am a survivor of hodgkins lymphoma diagnosed in 1982 and then treatment after exploratory surgery and biopsy of lymph nodes and liver.and also removal of spleen. I had radiation treatment then after I healed from the surgery in jan 1983.

I have the muscle atrophy and fibrosis in my neck and upper back where the radiation hit my body. I have dropped head syndrome and am hunched over when I walk with bad posture because of the muscle fibrosis.

I now have pinched nerves in my lumbar because of the way I stood for so many years. I arched my back and held my head up with my hand to stand upright. I now have pain in low back and both legs. I need surgery to repair the problem but the pain doc is leery of me having surgery because of my unique problems. I have an appt with a neurosurgeon next week and see what he has to say about it all.

I have a plastic molded vest made to my measurements that is supposed to help me be more upright. I say it is my storm trooper outfit because it looks like what they wore In Star Wars movies. Also a neck brace to help give my head support since it just wants to flop forward.

I have had therapy but started in 2011 when I figured out what was wrong with me. So by the time I had therepy muscles were wasted and you can't get them back.

It was a battle to get tests to prove what was wrong with me. When I showed my family doctor the info on radiation fibrosis she said it would be a waste of time to see a neurologist. She also told me that because I was a nurse and had an education that I could never get disability but through much hard work and time I did.

I was a nurse and couldn't stand upright anymore and had trouble with the dropped head syndrome. I was in so much pain at work and by the time I got home I was so wiped out with pain and burning in my neck and back and feet. I ended up having a ruptured bicep in my right arm. That was the straw that as they say broke the camels back. I had to be off of work for 3 months and continued to become weaker and lose more control of my head and became more stooped over.

It took me a long time to get disability. I think about a year and a half from the time I started the whole process and then finally ended up before a judge that granted me the disability.

It is comforting to read all of your stories on here. I do feel like we are forgotten as survivors. We have our own set of problems because we survived. I am thankful for the cure and they did the best they could with what they knew at the time. I am glad they have learned and could change the way they treat patients now.

I don't know about the rest of you but I have had to be my own patient advocate to get where I am. I live in the midwest and no one around here has heard of radiation fibrosis. I try to tell those that I have contact with about this condition. You also have to be proactive and tell your family doctor of problems that could occur. Such as heart problems. I am having an echcardiogram tomorrow because of articles I read on possible cardiac problems from the radiation. I have a different family doctor who will listen to me and look at the articles I show him about possible complications from the radiation.

God bless you all and have a great day

cjk22 said:

radiation and muscle atrophy

I posted on here a few years ago and I don't think I have been back since. I wish I would have checked back in. There are so many of you that I can relate to. When I figured out on my own what was wrong with me I felt so alone. I think I got on this site in 2011 at that time. I am a survivor of hodgkins lymphoma diagnosed in 1982 and then treatment after exploratory surgery and biopsy of lymph nodes and liver.and also removal of spleen. I had radiation treatment then after I healed from the surgery in jan 1983.

I have the muscle atrophy and fibrosis in my neck and upper back where the radiation hit my body. I have dropped head syndrome and am hunched over when I walk with bad posture because of the muscle fibrosis.

I now have pinched nerves in my lumbar because of the way I stood for so many years. I arched my back and held my head up with my hand to stand upright. I now have pain in low back and both legs. I need surgery to repair the problem but the pain doc is leery of me having surgery because of my unique problems. I have an appt with a neurosurgeon next week and see what he has to say about it all.

I have a plastic molded vest made to my measurements that is supposed to help me be more upright. I say it is my storm trooper outfit because it looks like what they wore In Star Wars movies. Also a neck brace to help give my head support since it just wants to flop forward.

I have had therapy but started in 2011 when I figured out what was wrong with me. So by the time I had therepy muscles were wasted and you can't get them back.

It was a battle to get tests to prove what was wrong with me. When I showed my family doctor the info on radiation fibrosis she said it would be a waste of time to see a neurologist. She also told me that because I was a nurse and had an education that I could never get disability but through much hard work and time I did.

I was a nurse and couldn't stand upright anymore and had trouble with the dropped head syndrome. I was in so much pain at work and by the time I got home I was so wiped out with pain and burning in my neck and back and feet. I ended up having a ruptured bicep in my right arm. That was the straw that as they say broke the camels back. I had to be off of work for 3 months and continued to become weaker and lose more control of my head and became more stooped over.

It took me a long time to get disability. I think about a year and a half from the time I started the whole process and then finally ended up before a judge that granted me the disability.

It is comforting to read all of your stories on here. I do feel like we are forgotten as survivors. We have our own set of problems because we survived. I am thankful for the cure and they did the best they could with what they knew at the time. I am glad they have learned and could change the way they treat patients now.

I don't know about the rest of you but I have had to be my own patient advocate to get where I am. I live in the midwest and no one around here has heard of radiation fibrosis. I try to tell those that I have contact with about this condition. You also have to be proactive and tell your family doctor of problems that could occur. Such as heart problems. I am having an echcardiogram tomorrow because of articles I read on possible cardiac problems from the radiation. I have a different family doctor who will listen to me and look at the articles I show him about possible complications from the radiation.

God bless you all and have a great day

 

Hi CJK,

i had extensive radiation for Hodgkins about 20 years ago and 5 years ago figured out (from this site) that I also had RFS. My oncologists had denied I had RFS so I went to Sloan Kettering to get more info and the diagnosis. The long-term clinic there was so helpful and made me better understand my condition - the neurological, internal, and orthopedic ramifications of my radiation. I took home a folder with medical summaries and recommendations for monitoring systems. Having this information and an article by Dr. Stubblefield helped to educate my docs and other health professionals as well as legitimize my symptoms. Physical Therapy, home exercise, heat and other interventions have helped considerably but a support collar has been particularly useful. I take frequent rests throughout the day and sometimes use a home traction machine. My neck and upper back tire easily and are stiff and painful which is limiting. 

I'm sorry you have had to be your own advocate but you sound strong. I know what a physical and emotional toll RFS causes and am sorry you are experiencing so many symptoms. I recommend going to a cancer survivorship center in your area if you haven't already done so for an assessment. it was such a relief to find people so knowledgeable and empatHetic. 

Best to you -

Viola. 

viola43 said:

Radiation and neck atrophy

Hi CJK,

i had extensive radiation for Hodgkins about 20 years ago and 5 years ago figured out (from this site) that I also had RFS. My oncologists had denied I had RFS so I went to Sloan Kettering to get more info and the diagnosis. The long-term clinic there was so helpful and made me better understand my condition - the neurological, internal, and orthopedic ramifications of my radiation. I took home a folder with medical summaries and recommendations for monitoring systems. Having this information and an article by Dr. Stubblefield helped to educate my docs and other health professionals as well as legitimize my symptoms. Physical Therapy, home exercise, heat and other interventions have helped considerably but a support collar has been particularly useful. I take frequent rests throughout the day and sometimes use a home traction machine. My neck and upper back tire easily and are stiff and painful which is limiting. 

I'm sorry you have had to be your own advocate but you sound strong. I know what a physical and emotional toll RFS causes and am sorry you are experiencing so many symptoms. I recommend going to a cancer survivorship center in your area if you haven't already done so for an assessment. it was such a relief to find people so knowledgeable and empatHetic. 

Best to you -

Viola. 

 

 

Thank you Viola for your note to me.

We dont have a cancer survivorship center here or near here.

I do have a physical therapist that I see occassionaly. I do have exercises that he has given me.

I find that having a site like this and able to find other survivors such as yourself is such a help. When I first was trying to find out what was wrong with me it was so hard. Even once I figured it out what was wrong with me I was so anxious to find someone having problems such as myself and didn't know where to find anyone. I asked one doctor by email after I read an article that  he had written if he was treating any patients or knew of any patientsith muscle problems related to radiation treatment. At that time in 2011 he told me that a small percentage of patients developed this problem and that he hadn't seen anyone for years with this radiation fibrosis. He was a neurologist at Washington State University. I was pretty bummed. I needed to find someone like me and see how they were coping.

Anyway thank goodness I have found others that can understand because they are going through it what I am too.

God's blessings, Viola

viola43 said:

Collar and sportive vest

Hi CJK,

i am curious about the neck collar and molded vest you mentioned in an earlier post. you said you were given for posture and pain. what type of collar is it? ( I used a Headmaster for a few years but started having trouble with it so now use one called "LA collar.") Does the vest help? What does it look like? Who ordered it for you? Does it have a name? It sounds interesting to me as I have many of your symptoms as a result of Hodgkin's Disease treatment.

Thanks is very much.

best, Viola

nt and back to it. It velcro's together at the sides. It was made to my specific measurements. If you have seen the star war mobies then you will know what i nean when I call it my storm trooper vest.It is a molded plastic with some foamfrubber on the inside to make it more comgortable. It gets very hot wearing it.

I can't tell you if the vest really helps. I developed sciatic and left leg pain and because it hurt too much to be up on my legs I haven't used it as I thought I would.. I don't know the name of the collar because it was at the place where they made the vest and wanted me to try it with the vest.

Now I am going for a cardica cath tomorrow. My heart has now been afffected by the radiation. 

cjk22 said:

I had my heart cath and the results were a little better that they thought after I had the echocardiogram. My ejection fraction was 40% instead of 25% that seemed to show on the echo. Also valve leakage not like the echo showed either so that was good. I do have cardiomyopathy, pulmonary hypertension and an enlarged left ventricle.I just figured I was done with the radiation damage to my body and to find this out knocked the wind out of my sails. How much longer does this radiation continue to destroy? What else can happen to my body because of the radiation? I have really been in a depressed state with all of these new diagnosis.  Then I feel guilty for feeling depressed because there are others out there worse than me. So how can I be selfish and be depressed about my situation? Living life is so hard now. Just the simple things of hanging clothes back up in the closet takes so much effort with the dropped head.etc.

How do i stop feeling sorry for myself in private and crying and longing for the old days of being normal?

I don't show this side to others. They really don't understand.

Everyone asks how I am doing and if I am feeling better when I see them. You can't make them understand that there is no getting better. I just say I am doing okay.

I am using a walker now, I have a handicap hanger in my car, I can't clean my house and cook as I once did. i just feel depressed about the loss of independence and have to wait on someone else to help. People say to call them if I need help or a meal. I don't want to call. I just want them to come and say I am here for 2 hrs what do you need done. i will not call and inconvienience them. I grieve my old life, my independence, my friends from work etc.

Well I guess i am done feeling sorry for myself. That felt better getting it out there because you all understand. Some of you are in the same boat. How do you cope?

Carol

Carol, you are allowed to feel exactly how you feel.  I don't think there is any one way to live with the after effects of such treatment for cancer and hope you can find someone to talk with, this is a great place to talk with others who truly understand what you are going through, but someone who can suggest a way to cope.

I think we have all had the offers to help, etc...and some mean it and some don't.  Maybe you could invite someone over to play some cards or something, I doubt you want to always talk about yourself, and I think that is everyone's fear when they offer.  Set a time limit on it and how much it would mean to spend some time with them. 

Again, I hope you can find someone to talk, and it is ok to have your cries, I like to do that in the shower so the water washed them all down the drain. 

Your life now is your new normal and it takes adjustment.  I pray you find some peace.