Radiation Side Effects

Labyrinth Walker said:

Radiation Side Effects

Hello,

I was diagnosed with anal cancer in August 2011, immediately followed by six weeks of radiation, and two rounds of chemotherapy. So it has been 2.25 years since the end of treatment. I had been an avid hiker/backpacker having climbed a 14-mile, 3,700 ft.- vertical elevation trail the week before my doctor's appointment. I only say this in the framework that when I finished my treatment I was so anxious to regain my previous capability.  I had excellent doctors I believe, but besides advising the use of vaginal dialators/estrogen cream beginning a few months after the end of treatment, I was not warned about the radiation fibrosis that would occur in the skeletal muscle (quads, hamstrings, well, everything from the waist on down and the knees on up).

I was sidelined a year ago with meniscus (knee) surgery caused by a relatively simple, easy hike.  It has taken a year to recover from that. Now that my knee is completely healed, I am discouraged to discover that I hurt all the time; hamstrings, hips, quads, etc. Excersize helps; takes a LONG time to warm up; stretching helps (so much loss of flexibility though), and it seems to be gradually getting worse. I completely agree with the "use it or lose it" advice. The longer you hold still, the greater you sieze up. After reading so many of these posts I see that this is a situation I'll have for the rest of my life.  I found a PubMed abstract at the following: http://www.ncbi.nlm.nih.gov/pubmed/22108231 that plainly describes our condition.  Furthermore, the Journal of Clinical Onclogy has a 2005 article discussing the potential reversibility of this condition, using Vitamin E and pentoxitylline. I will be asking my rad onc doc about this.  I haven't seen him in ages, but it seems to be time.

Bottom line, the fibrosis seems to be getting worse over time; making movement and stretching a top priority forever.

Hang in there.

Thanks for joining us, but I am sorry to hear you have had to take this journey like the rest of us here.  I, too, am quite active and have been a runner for years.  Aside from the usual aches and pains from overuse, I never had many complaints prior to cancer, except for a stress fracture in my right 2nd. metatarsal in 2004.  After I recovered from surgery to fix that, I took back to running and did great.  I had good range of motion and flexibility.  Then cancer came along, then radiation, and as you know, after that things changed somewhat.  I no longer have the flexibility I used to and have trouble with hip abduction and adduction (movements to the side), however, I have no trouble with running.  I can no longer side cross-legged on the floor, as that requires me to spread my hips and femurs.  That is just not happening for me anymore.  Given that many people on this site and other sites that I frequent have these same complaints, it seems apparent to me that this is common among those who get pelvic radiation.  Like you, it takes me awhile to get warmed up and moving in the mornings.  Cold and/or rainy weather doesn't help either.  I also have barking knees, especially my left knee, which has given me some pain off and on for years.  I was diagnosed with osteoarthritis when I sought help with the knee pain from an orthopedist prior to doing a marathon.  He did a series of 5 weekly Supartz injections followed by one Cortisone injection.  I must say that the Supartz really helped, but the Cortisone not so much.  I was, however, able to do that race and have continued to run since.  I can totally relate to your frustrations.  I want to stay active and running for as long as I can.  I know if I ever stop, it's over.  I wish you all the best and hope you will come here to find support when you need it. 

Sundanceh said:

Making Lemonade out of Lemons
Hi there

I normally post on the colorectal board - my name is Craig.

I look over from time to time since Joanne started this particular board. Your post on radiation got my attention - I just made a couple of replies to other posts on the same topic, so it's the topic of the day for me.

The answer to your question is YES. It will always be that way.

I had 25x treatments in the left and right hip and up the back end as well. The collateral damage has been enormous. It's been over 5 years now since I had this done and it is only getting harder to move around as the years pass.

Biggest problem seems to be when I try and bend over to put on socks and shoes or pick something up off the floor. Also, if I get down on the floor on my knees or try and sit on the floor and get up, I have a really tough time doing that - move like a very old man and need furniture to prop myself on to give me a hand.

I was only 43 when this happened - the radiation "aged" my body exponentially. I worry about the long time prognosis and what I can expect as I get older. It's a sobering thought.

Driving a car or sitting in a chair sometimes gets me stiff and I have to sort of unkink but then I can get going ok.

I walk on a treadmill and climb the stairs at work to try and keep as flexible as I can, so I don't get totally unable to do anything.

Reading your comments about bending and sitting really struck a chord with me. Everyone always thinks it's chemo - but it's RADIATION that does this and nothing else. I've talked about this on the colorectal board, but it falls on deaf ears.

It's nice to meet you BTW - I hope this post helps you some and lets you know that you are not the only one who suffers from this affliction.

If you run into something good, please let me know - I'd be willing to try it.

Kindest regards,
-Craig

oops.  Did not notice date. Sorry.

Sundanceh said:

Making Lemonade out of Lemons
Hi there

I normally post on the colorectal board - my name is Craig.

I look over from time to time since Joanne started this particular board. Your post on radiation got my attention - I just made a couple of replies to other posts on the same topic, so it's the topic of the day for me.

The answer to your question is YES. It will always be that way.

I had 25x treatments in the left and right hip and up the back end as well. The collateral damage has been enormous. It's been over 5 years now since I had this done and it is only getting harder to move around as the years pass.

Biggest problem seems to be when I try and bend over to put on socks and shoes or pick something up off the floor. Also, if I get down on the floor on my knees or try and sit on the floor and get up, I have a really tough time doing that - move like a very old man and need furniture to prop myself on to give me a hand.

I was only 43 when this happened - the radiation "aged" my body exponentially. I worry about the long time prognosis and what I can expect as I get older. It's a sobering thought.

Driving a car or sitting in a chair sometimes gets me stiff and I have to sort of unkink but then I can get going ok.

I walk on a treadmill and climb the stairs at work to try and keep as flexible as I can, so I don't get totally unable to do anything.

Reading your comments about bending and sitting really struck a chord with me. Everyone always thinks it's chemo - but it's RADIATION that does this and nothing else. I've talked about this on the colorectal board, but it falls on deaf ears.

It's nice to meet you BTW - I hope this post helps you some and lets you know that you are not the only one who suffers from this affliction.

If you run into something good, please let me know - I'd be willing to try it.

Kindest regards,
-Craig

My husband is 1/2 way through his radiation treatments for rectal cancer as  of today.  Within the last 5 days or so he is up at night with severe aches in his hips.  This is a new complaint for him.  He has never had this before.  I talked to his nurse that said hip pain should not be a side effect.   This is a man that never complains and has to be threatened to take his B/P meds daily.  ;-}.  He was almost in tearas last night with this.

The nurse did say it could be pain from bone marrow stimulation from the radiation.  HIs platelets have dropped some and that would indicate a change there.

My question is:  What can be done to ease this severe ache/pain?  It's deep.  It only botheres him at night.  He's upu around 1:30 am and stays up all day as he works.  He's home today in bed.

Any suggestion is welcomed.

Judy

Sundanceh said:

Making Lemonade out of Lemons
Hi there

I normally post on the colorectal board - my name is Craig.

I look over from time to time since Joanne started this particular board. Your post on radiation got my attention - I just made a couple of replies to other posts on the same topic, so it's the topic of the day for me.

The answer to your question is YES. It will always be that way.

I had 25x treatments in the left and right hip and up the back end as well. The collateral damage has been enormous. It's been over 5 years now since I had this done and it is only getting harder to move around as the years pass.

Biggest problem seems to be when I try and bend over to put on socks and shoes or pick something up off the floor. Also, if I get down on the floor on my knees or try and sit on the floor and get up, I have a really tough time doing that - move like a very old man and need furniture to prop myself on to give me a hand.

I was only 43 when this happened - the radiation "aged" my body exponentially. I worry about the long time prognosis and what I can expect as I get older. It's a sobering thought.

Driving a car or sitting in a chair sometimes gets me stiff and I have to sort of unkink but then I can get going ok.

I walk on a treadmill and climb the stairs at work to try and keep as flexible as I can, so I don't get totally unable to do anything.

Reading your comments about bending and sitting really struck a chord with me. Everyone always thinks it's chemo - but it's RADIATION that does this and nothing else. I've talked about this on the colorectal board, but it falls on deaf ears.

It's nice to meet you BTW - I hope this post helps you some and lets you know that you are not the only one who suffers from this affliction.

If you run into something good, please let me know - I'd be willing to try it.

Kindest regards,
-Craig

thanks so much for your post. Several months after I completed radiation I suddenly couldn't cross my leg to tie mY shoe!

i have been dong stretching exercises and walking and hiking. Hiking is better than walking. I also get acupuncture and follow it with a massage. 

I am going to talk to the Dr tomorrow. I had no idea this was a side effect. 

Lindylee

Sundanceh said:

Making Lemonade out of Lemons
Hi there

I normally post on the colorectal board - my name is Craig.

I look over from time to time since Joanne started this particular board. Your post on radiation got my attention - I just made a couple of replies to other posts on the same topic, so it's the topic of the day for me.

The answer to your question is YES. It will always be that way.

I had 25x treatments in the left and right hip and up the back end as well. The collateral damage has been enormous. It's been over 5 years now since I had this done and it is only getting harder to move around as the years pass.

Biggest problem seems to be when I try and bend over to put on socks and shoes or pick something up off the floor. Also, if I get down on the floor on my knees or try and sit on the floor and get up, I have a really tough time doing that - move like a very old man and need furniture to prop myself on to give me a hand.

I was only 43 when this happened - the radiation "aged" my body exponentially. I worry about the long time prognosis and what I can expect as I get older. It's a sobering thought.

Driving a car or sitting in a chair sometimes gets me stiff and I have to sort of unkink but then I can get going ok.

I walk on a treadmill and climb the stairs at work to try and keep as flexible as I can, so I don't get totally unable to do anything.

Reading your comments about bending and sitting really struck a chord with me. Everyone always thinks it's chemo - but it's RADIATION that does this and nothing else. I've talked about this on the colorectal board, but it falls on deaf ears.

It's nice to meet you BTW - I hope this post helps you some and lets you know that you are not the only one who suffers from this affliction.

If you run into something good, please let me know - I'd be willing to try it.

Kindest regards,
-Craig

Hi Craig,

    Having read your account of your struggles post-radiation, it's as though I was reading my own story. I had anal cancer last year, had 35x radiation tx and 2 rounds of chemo. The radiation has done a great deal of damage to both of my hips, my lower (sacral) spine, and my anal sphincter. I am also an aged person in comparison to pre-cancer treatment. It can't be changed, so I do the best I can. I'm now 56 y/o, but feel older sometimes. My name is Jim. Thanks for your thoughtful and well-written post.....not falling on deaf ears with me!

Bgrond said:

I am 6 months post treatment

I am 6 months post treatment for a  metastatic pelvic sidewall tumour that invaded my psoas muscle. They never found the primary source of my cancer.  I received massive amounts of radiation to my entire pelvis front and back  40 rounds  25 mins a day at a high intensity.  I have had a deep pelvic ache that seems to just be getting worse daily  I find the more I stand the worse it gets  the Dr prescribed me gamapentin to help with pain but I'm starting to feel like this pain is permanent damage and may be my "new normal"

so

I had stage 3 anal cancer in 2008.  The cancer had spread to some lymph nodes and I got massive doses of radiation - 35 twenty minute sessions and 3 rounds of chemotherapy.  I was burned to a crisp.  Toward the end of therapy I ended up in the hospital for 3 weeks with massive radiation burn and almost no white blood cells.  I went from 130 lbs to 92 lbs.  I almost died literally.  I once was every flexible and agile but after the treatments all that changed.  At first I couldn't even put on my shoes and I just wore pull up pants. I've had lymphodemia in my ankles so bad they looked like elephant feet.  I was unable to put on the compression stockings because I couldn't bend or move that much.  I live alone and have had no one to help me. With lots and lots of painful work I got back to close to normal except for the lymphodemia.  Then last August 2015 I was working out at the gym and I felt something give in my right leg.  I thought I could work through it but couldn't.  I started the rounds of doctors.  I had every test imaginable to determine what was wrong.  No one could figure it out. I do have osteoporous now due to the chemo they said.  I also have degenerative disc disease from the treatments and of course arthritis.   The list of things I've done in the last 10 months include: Physical Therapy, Laser Therapy, TENS Therapy, Dry Needling, Essential Oils, Stretching Exercises (constantly it seems), Water Therapy, Acupuncture (4 months) which included lots of stretching exercises and now I've had 6 weeks of Theraputic Massage!  I can say that the Acupuncture got me out of the intense, unbearable pain but it didn't help my flexibility that much. The Acupuncturist who is a Korean Dr of Acupuncture trained in Korea, finally diagnosed my problem as a Psoas Muscle problem.  He also said that other hip flexor muscles were affected as well. The thing that has helped me regain more flexibility has been the Theraputic Massage.  It has loosened the muscles so I can do the stretching exercises. Before, the muscles were so locked up I couldn't stretch them out. I'm still limping and now my leg is so weak from not using it properly that it is actually smaller than my better leg. But it is better. Also, for right now my lymphodemia is gone! I'm not saying that will continue of course.  Then yesterday I was googling Psoas Muscle Therapy and I ran across a guy that teaches you how to do Somatic Exercises for all kinds of muscle problems.  I did some yesterday and today and I really believe I'm better.  His name is Lawrence Gold. His exercises are on YouTube.  Check it out.  It's free!

Stephen2 said:

Radiation

HI: I am 3 years out from having Anal cancer and now am cancer free.  I do agree with Craig, it does not get any better, at least not for me.  I am now in a wheelchair and have extensive nerve damgage in both legs.  I cannot stand at all and thankfully have aides who help me quite a bit.  Still on pain meds but trying to cut down.  Will be seeing another specialist in the Fall but, truthfully, don't expect much new for my condition.  My braces don't help much, both feet turn outward so that naturally makes standing impossible.  Anyone else in a wheelchair?  I am home in an apartment for the disabled which helps a lot.  I am sorry to be such a downer but I don't mean to be.  At least I am home enjoying Netflix and my grandchildren who visit often. Not necessarily in that order) I am waiting word on an electric wheelchair which I would love to have.  My shoulder is quite sore from wheeling myself around, I also had a mastectomy on that side many years ago but, unlike now, I did not need chemo or radiation. My anal cancer was detected late, actually, since my dr. kept calling it a hemorrhoid but without actually examining me!  If anyone out there has neuropathy as I do please let me know if you have found any way at all of relieving it or making it better.  I will try just about anything.  Best wishes to all, enjoy the summer.  Stephen2  

I am really sorry about all you are having to deal with.  People who have not been through this treatment have no idea how much collateral damage it can cause.  I do not think you are being a downer.  You are someone who has suffered pain and disabling side effects.  I hope that if anyone has any suggestions for you that they will post.  I'm sorry that I cannot offer any advice.  Hopefully, the specialist you will be seeing can help you.  Please let us know how that goes and take care.

Martha

mp327 said:

Stephen2

I am really sorry about all you are having to deal with.  People who have not been through this treatment have no idea how much collateral damage it can cause.  I do not think you are being a downer.  You are someone who has suffered pain and disabling side effects.  I hope that if anyone has any suggestions for you that they will post.  I'm sorry that I cannot offer any advice.  Hopefully, the specialist you will be seeing can help you.  Please let us know how that goes and take care.

Martha

Oh, oh, seems it did "take."  Sorry!

Stephen2 said:

Radiation

HI: I am 3 years out from having Anal cancer and now am cancer free.  I do agree with Craig, it does not get any better, at least not for me.  I am now in a wheelchair and have extensive nerve damgage in both legs.  I cannot stand at all and thankfully have aides who help me quite a bit.  Still on pain meds but trying to cut down.  Will be seeing another specialist in the Fall but, truthfully, don't expect much new for my condition.  My braces don't help much, both feet turn outward so that naturally makes standing impossible.  Anyone else in a wheelchair?  I am home in an apartment for the disabled which helps a lot.  I am sorry to be such a downer but I don't mean to be.  At least I am home enjoying Netflix and my grandchildren who visit often. Not necessarily in that order) I am waiting word on an electric wheelchair which I would love to have.  My shoulder is quite sore from wheeling myself around, I also had a mastectomy on that side many years ago but, unlike now, I did not need chemo or radiation. My anal cancer was detected late, actually, since my dr. kept calling it a hemorrhoid but without actually examining me!  If anyone out there has neuropathy as I do please let me know if you have found any way at all of relieving it or making it better.  I will try just about anything.  Best wishes to all, enjoy the summer.  Stephen2  

Our Lion. Gone to live with the angels. 

Radiation is the pits, but, I'm alive because of it, so what the hey. 

I hope you are able to learn to cope with the side effects. Sadly, radiatoin can be a gift that keeps on giving. 

Gone are the days I can put my socks on without turning it into a marathon event. 

SUE (from the CRC forum) 

Hello everyone, 

I first would like to say that I am happy that this group is here. There wasn't anything like this when I went through treatment. 

Brief history: I was diagnosed in June 2007 at 38 years old. I was treated with chemotherapy and radiation. However it came back in 2008. I was again given more chemotherapy (4 weeks) and radiation twice a day for two weeks. Currently I am cancer free. 

It has been difficult living with the side effects of both the chemo and radiation. I do find a bit of solace in reading everyone's stories. And at the same time I wish none of us had to go through this. 

Thank you all for sharing.