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Radiation Side Effects

lemonade
Posts: 63
Joined: Feb 2010

I am so relieved to have found this discussion group. So far I am an anal cancer survivor. Was diagnosed in July 2009 - then had surgery, chemo and radiation. I finished radiation in October 2009. I am having a problem with my hips not being limber at all. I have reduced flexibility and range of movement I used to be able to touch my toes, sit cross-legged on the floor, etc. My glutes, lower back and upper thigh muscles hurt every day. This week I started (without a doctor's advice) some physical therapy movements for hip replacement patients that I found on the internet. Is this normal? Will it always be this way?

I really appreciate everyone's input. Thank you.

txrn
Posts: 1
Joined: Apr 2009

Barbara,
It has been a year since you posted this message and I hope that your pain is now gone; however if you are still having pain and thinking about a support group I would be happy to share experiences with you. I live in your area and have also experienced the same painful side effects.

sherinc
Posts: 6
Joined: May 2010

hello Barbara,
I am 2.5 yrs from conclusion of radiation/chemo. BLAH BLAH . I too am grateful no joke to be alive. Farah had the same cancer as I did and she died 2 years from diag. Farrah did not take the conventional treatment that I and it appears so did most of us. I guess that I am a survivor but is that before 5 years or after? Jeez I am so confused about this point. Your comment about everyone else around you feels all is healed and its time to move on . I can so relate to this. Its like all the world says ok you are treated therefore you are done with being sick. I feel like I am alone in my world. I will have surgery to repair some of the damage from the radiation and continue to survive. Blessings to all.

Ann_i_
Posts: 47
Joined: Oct 2011

I also have Psoriasis and a colostomy (though currently labeled temporary.)

My psoriasis has added complications, trying to maintain a waffer over my stoma while having an allergic reaction to adhesives and then having the blisters turn into psoriasis has made life with a colostomy interesting. (to say the least)

My elbows are bad (mostly because I pretty much lived with supporting my weight on them and still do to a large extent. Just can't seem to break the habit now.)

I'm currently going through a break out phase with my psoriasis so my arse and hips and legs are breaking out, the area under the waffer is all broken out and my hands are breaking out. (I don't usually have breakouts on my hands so I get worried when it hits my hands/palms/soles of my feet.) I'm hoping the break out won't get too severe at this time. (I've got enough on my plate.)

clouse
Posts: 12
Joined: Oct 2016

I do not have psoriasis but have had issues with my colostomy. I see pictures in books of Stoma's and they are so nice and round. Mine looks like something out of alian. Because of my skin growing over the bridge after surgery and reaction to adhesives I also have had difficulty getting a good seal. Have been using a new bag that really works for me. No adhesives. Its preshaped and requires a belt. No more leaks or irritation. Its worth a try. The Bag can be a royal pain in the ass. Best of luck.

Love and light

Shelley

Angela_K
Posts: 374
Joined: Jan 2011

Martha is so right. Exercise helps tremendously. I am 3 months post and have had some trouble with flexibility but have incorporated daily yoga and mat Pilates and it has helped tremendously. I would suggest at least a stretch routine in the mornings and evenings. You will find simple mat Pilates sequences on-line that you might consider. Pilates makes long & lean muscles, promotes flexibility and builds a very strong core while using movements in your natural range of motion. Google Joseph Pilates to get the history of this form of rehabilitative exercise.

Hope this helps. LOVE your profile name, by the way!

Angela

sissy310
Posts: 300
Joined: May 2010

Wow...this thread was very interesting...I too have a lot of stiffness in the hip lower back area and agree, this isn't chemo, this has to be radiation as this area was the area that was zapped. I have not gone back to the gym yet but renewed and will be going in a week or so. Expect to do Treadmill and some light weight training. I have found when I get up in the morning I am so stiff I feel like I'm 163 and not 63. I was always very active and limber so this is new to me to be this stiff - it actually annoys me so I purposely move around and do more.

I didn't realize how stiff I was until I went for my first annual pap in years and could not put my legs in the stirrups. The left leg was okay but the right leg was so stuff in the hip/back area I just could not do it. I honestly did try and kept thinking what the hell? Why isn't my leg doing what I want it to do? The pain was excruciating when I tried. So we had to improvise. Now I'm more determined to do stretches and exercises to keep as limber as I can. I could relate to much of what everyone was saying - even putting on socks and sometimes pants is hard - not the left side, the right side. I expect to try a lot of what was suggested here. Marilyne

melbas2
Posts: 108
Joined: Aug 2010

I am 7 months post treatment and the stiffness is unbearable most days.I used to be a corporate trainer for IHOP, which meant I flew the states to open new stores and train the staff. I would go 150 mph for 12 - 14 hours per day, now I'm lucky to get out of bed. I've applied for Cleaningfora reason, and I've been the next on the list for 3 months. My husband & I are so sick of take out ffood, but I can't stand long enough to cook, or wash dishes, it takes me forever to vaccuum or do laundry because I hurt so bad. Since my appt with my surgeon last week, I am finally seeing and feeling improvent in my butt. So now that the weather here in Nebraska is finally getting warm I'm going to try to start walking. I may have to use the walker at first, but I'm hoping it will help with my flexibility. The other side effect I'm having a hard time with is the constant itchin and the insomnia. My onc prescribed Ambien and I usually take it around 10, 10:30. I'll sleep til abot 12:30 or 1, then I'm up for 3 or 4 more hours, so I'm constanly tired. If any one else is going thru this I' appreciate any and all suggestions. Thanks, Melodie

Captain11
Posts: 88
Joined: Apr 2011

Hi, I am glad I found this topic. I completed my treatments in Mar 2010 and have been cancer free since. I just had a PETscan and will learn the results next week. I hope everything is still okay... I have had constant stiffness in my hips and my calves as well. Also, I have the neuropathy in my feet; more in my left than in my right, which is odd, since I am left-handed... The worse part of this for me is that I have a balance problem. I went for phys therapy, and was told that the balance is in the ankle and that the ankle can't send the message to the brain, or something to that effect. I did pool therapy, which helped immensely for the balance and trying to strengthen the hip muscles, but the chlorine in the pool was terrible on my pelvic area (I assume from the radiation). Is anyone else having a balance problem as well??? Also, while in the shower, if I close my eyes while washing my hair, my balance is gone. As far as the mouth sores, I had dry mouth and couldn't eat for at least 3 days. I used Biotene toothpaste, mouthwash, and lubricating mouthgel. My dr also prescribed BMX mouth solution, which also worked well. The main problem with the drymouth for me was that I couldn't eat or drink anything spicey, hot, chewy, etc. Most foods dribbled out of my mouth as though I was on permanent novocaine. Does anyone else still have any rectal bleeding or hemorhoids?? Mine will not go away and they still have breakthrough bleeding when I strain. I have no urinary problems though. I was diagnosed in June 2009 with stage 3B anal cancer. My first round of chemo and radiation shrunk the tumor, a lot, but I still needed more, since the cancer spread to the lymph nodes, but wasn't detected until after I completed that first round of chemo. Has anyone else been unable to return to work. My previous job, (from which I was terminated due to long term illness) required that I drive a lot and interview people. This is very difficult for me now because of the stiffness and the balance problem. My primary care doesn't think it is safe for me to drive since my feet go numb. Also, it is difficult for me to stand for more than 5 minutes without feeling weak and having to lean on something or sit down. Does anyone else have that problem? I thought I could just get through the treatments and go back to my old life...

mp327's picture
mp327
Posts: 3812
Joined: Jan 2010

My first question is why, if you were diagnosed in June 2009 with stage 3B anal cancer, you just finished treatment in March 2010? Thank you in advance for a little clarification on that. As for neuropathy, I've experienced some of that. However, due to a neurological condition that I have, I'm unable to blame that on radiation or chemo for my anal cancer, which I received in 2008. So I don't know if it's from the treatment or the other problem. As for continuing to have periodic rectal bleeding, I have bouts of that, especially after periods of constipation and hard bowel movements. It is radiation proctitis, meaning that the blood vessels in the area that was treated are closer to the surface and are easily irritated by passing stool. I do have some hip stiffness and have lost a lot of flexibility. I try to stretch often and keep exercising, which seems to help.

sephie's picture
sephie
Posts: 635
Joined: Apr 2009

i am 23months post tx and still have bleeding after even soft BM. i do not strain . it is getting better because i can go for days and not have bleeding then it will bleed again. so it takes time. yes, i also have balance problems that i did not have before but never thought about it being due to tx but could be, i guess. i have just now after 23 months been able to sit for any length of time but it still irritates my anal area if too long. just now getting more energy but get tired at 5 pm. i move constantly and do not lay around as much . it takes time. sephie

Captain11
Posts: 88
Joined: Apr 2011

Thanks for your input, re the rectal bleeding and balance problem. I sure hope it will get better. As it is now I am unable to work, or at least anything near to what I was doing, and now it is creating a financial situation for me. Weird thing of all is that I was a caretaker for my father, then my mother, both of whom are now deceased. Then my husband was diagnosed with esophogeal cancer in June 2008. His cancer was surgically removed, but he had mega mega mega difficulties with infections, etc, so much that he was in ICU for 11 weeks, totally medicaed and sedated, after that for another 5 weeks in recovery and rehab until being released from the hospital. I was his care giver from then on until I got diagnosed in June 2009. Both of us are disabled now, and the money is very tight. We are at less than 40% of our previous income, but with medical bills and medical insurance sky-high. I am totally disheartened, which I know I betted shake because stress is not good for reuperation. Any suggestions, anyone?

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

I also still bleed and it will be 3 years this fall. (September 12th was when I was told I was cancerfree). I still had a small portion of the tumor in August, so sometime in there I became cancerfree. I do not bleed daily(well at least not that is noticable), but I do still bleed, and I have had a few scares since when I bleed heavily for a few days to a week at a time, but each check the doc said there was no cancer evident.I have had polyps removed a couple of times since, but was told those were cancerfree. Anyhow, I have been told that I may never be bloodfree cause of the damage that has been done. I just need to notify the doctors if the blood is consistent for more than a week.

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

Hi, I have had problems with balance every since I had my radiation. I have come close to falling a few times. If it would not have been for something close by to grab or a family member I would have. I have told my doctor about this many times. Some days I can walk better than others, but I have had problems ever since the radiation. My doctor has been refusing to give me any pain pills for quite some time. I rushed myself off of them and had to fight ever time after that to get any type of medication to the edge off so I can get around. I think he let me have maybe three prescriptions over about a 8 month period of time, and then told me no more. Yay me. All because I am allergic to some of the milder meds, he has decided I can't have any meds. I haven't had pain meds in over a year and the pain on many days in severe. Sometimes it is just the weakness in the muscles driving me mentally crazy as I can't do many things, but there are days were some pain meds would sure help me get through. The lower back, the hips, the thighs, and I already had bad knees before all of this and have arthritis so yeah, this is just wonderful when trying to get around. I have used canes off and on throughout my recovery and it helps but I just feel stupid having to use canes at my age. I was caring for the elderly and mentally challenged before all of this. I would pick up clients and carry them from their beds to chairs, and back, or from wheelchairs to beds or chairs, and now I can hold a baby but I don't trust myself to walk around with one. I have had days where I have to tell my legs to move many times before it seems the signal will get down to my legs from my brain. The doctors have been told of this also on many occasions. Sometimes my husband just gets up and comes to move my leg for me so I can get it started on moving. I do a lot of leg lifts throughout the day, and bending and stretching also. It helps, but not much.

mp327's picture
mp327
Posts: 3812
Joined: Jan 2010

Have you been evaluated by a neurologist? From some of the symptoms you are describing, I am wondering if perhaps this could be nerve-related, such as nerve damage. It would be worth doing in my opinion. If that leads nowhere, you should consider seeing a pain management specialist. It sounds like your doctor is more concerned about you getting addicted to some type of medication than helping ease your pain. I would seek help elsewhere. Just a couple of suggestions.

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

Yes, my husband and I both have talked and have decided it is time to find a new doctor becuase we think he is hearing me, but not listening. There are a few other things that have happened that has made us think I need a new doctor also. A neurologist has not been something I have thought about but you could be right. That could be my answers. Thanks. He says, it is becuase the pills are highly addictive, and also because our insurance is pushing him to suggest other natural methods that do not include narcotics. Either way, I am tired of being miserable. I want to have a fulfilling life. I am grateful to be alive and have my family, but I am not mmuch good to them in my condition now.

Captain11
Posts: 88
Joined: Apr 2011

Hi, Worden4... I haven't had any pain, just that my legs and feet feel like they are frozen most of the time. I have Reynaud's syndrome, which may have been exascerbated by the chemo and radiation. My primary care suggested my possibly seeing a neurologist, but, she said that the medications a neurologist would prescribe would be the kind that make me groggy...which is not what I need when I have a balance problem. I am very fortunate in that I have had no pain throughout this whole ordeal, (well, other than my butt hurting during bowel movements, and then again, if I don't empty my bowels completely... by the way, does anyone else experience that: not emptying bowels completely????)
I also think you should get another doctor. I had to when I went through my treatments. I am telling you that the doctor's bedside manner is extremely, extremely important and can mean all the difference in the world to your care and recovery. I know, because my first oncologist was horrid.. his compassion was non-existent. I got a second opinion, and even though the news was the same: (not good), my second onc's delivery of the news was awesome. I did remarkably well, and he is super pleased with my progress. And don't worry that you are"hurting the doctor's feelings" by getting a second opinion... my primary care doc says that any doctor worth his/her salt will welcome you getting that opinion. Doctors don't know everything, so more than one opinion can only help you in your decisions about your health care. I also think that if you get a doctor you are comfortable with, your pain may subside like a weight taken off your shoulders. I hope I have helped and I wish you good luck. God bless.

sandysp's picture
sandysp
Posts: 862
Joined: May 2011

Are you legs both the same size? I have Lymphedema which is a side effect of cancer and cancer treatment particularly if the cancer was in your lymph glands. 

I have Lymphedema. Not every doctor who thinks they know something about Lymphedema can diagnosis it correctly. 

You need to see at least to start a good NeuroPhysiologist who specializes in rehabilitating cancer patients.

That's just my suggestion.

Let us know. Martha's suggestion is also a good one. I went to a Neurologist first and found I am in better shape than he is Neurologically:-)

All the best and good luck,

Sandy

sandysp's picture
sandysp
Posts: 862
Joined: May 2011

See if you can find a physician who specializes in Pain Management. Some doctors are just incapable of treating pain issues. I have a specialist in that area. I do not abuse medication. But when the pain gets the best of me, something that only now happens every 2-3 weeks, I find that one pill can roll it back and I become myself again. Even the Pain Manager doesn't exactly know why this is since the pain pill is only for an 8 hour period. My guess is that just the relief of most of the pain for a short period of time relaxes my neuro muscular system and leaves me much better off. Also, I am treated with Lyrica - 150 miligrams 3 times a day. I do not drink, exercise regularly (at least five days a week) and eat a decent healthy diet as I like to cook and thank God have had the energy to do that. I believe in Chi Gung and Tai Chi which I do for 20 minutes most days, and now am up to fifteen miles a week on my spin bike and walk our dog a mile every day. But that being said, I have very a very stiff and my thighs burn down the back most of the time. When the pain is bad my legs burn so much they keep me from sleeping. This is when, usually, I throw in the towel and take a pill. My husband thanks me as by this time I am so grumpy it's very difficult to be around me.

That being said, I was T2N1MO when diagnosed and very symptomatic. I could not sit for any length of time without huge spasms down my legs which would cause my neck to arch. It was impossible for me to enjoy concerts, etc. and working was getting to be pretty much impossible since I am a realtor and my job involves a lot of driving and working at a computer. (I have not returned to this job since it is just too stressful for me right now). My music job requires me to sit for rehearsals which caused the spasms to continue most of the night. I have returned to that job and am doing well at it. All I am saying is that the suffering was worse from the cancer than from the treatment. So ours was a bitter fate when we ever got the first invasive cancer cell in our bodies. But I am so grateful to the Radiologists at Sloan Kettering who treated me. They were wonderful. We cannot be cured through chemo alone. Radiation, particularly today's radiation remains, until a better cure can be found, a blessing to us.

myrtletree
Posts: 6
Joined: Jun 2012

hi, i had rectal cancer. treatment was chemo and radiation. permanent colostomy, but severe problems with growing lower back, glute, piraformis,and burning nerve pain. finally after a lot of research and fronting up to my colostomy nurse found out it is common to have severe nerve pain after radiation plus nerve pain from the scar tissue in the rectal area. don,t know why specialists and doctors are not open about this side effect. went on to strong antiflammitories, hip, glute and piriformis stretches, and lower back extensions with a back roll to stretch out scar tissue. my infrared massager is wonderful. i massage (with infrared light on ) lower back thigh piriformis and around where the scar tissue is located. after 3 months i went from a 10 to a 4 strength pain level. a lot of focus and hard work needed but hope this helps someone my colostomy nurse is passing this on to her clients. hope this helps someone. i can now walk daily with minimum pain but still pain on sitting in the evening. i have a better quality of life. unrelenting pain can be so debilitating blessings.

sandysp's picture
sandysp
Posts: 862
Joined: May 2011

I think it may be the high humidity, but I have to carry my pillow (a doughnut) with me again for the last few weeks (months). But I don't feel embarrassed about carrying the pillow around like I used to. It's just part of my wardrobe for the time being. I feels like it hurts in the low back bone and burns in my hip sockets lately. My doctor ordered a CT scan with contrast rather than a PT scan since evidently they can perhaps see if there are any tiny fractures from radiation, etc. I complained loudly at my last check up. This is something I had not done before my diagnosis when I had pain as I was too afraid. Now that they have overall improved my health, I am grouchier! Go figure! lol

WashedupHasbeen
Posts: 5
Joined: Jul 2012

Changed my life forever. And not in the best of ways. Yes I'm still disease free (since tx ended, 01/06); but sex for me is a thing of the past... Also, had a *real bad* case of radiation proctitis for a good 5 years or so afterward. Contributed to many, many embarrassing & downright awful situations/experiences. (And forced my resignation from a very promising professional position.) It's finally cleared up now, (I think!) for the most part; but I still occasionally struggle with bowel control & elimination issues. Yes, I do praise God, that He's seen fit to spare my life this way -- through that course of treatment, etc -- from that dread disease (in probably the worst place imaginable to have it - IMHO!) But, gosh, I wish I could give my wife a real good... Just wasn't in His Plan, for my life after age 45 I guess. Overall, I have to say it's great (*WONDERFUL!*) to still be here, & to be disease-free... But I ain't the man I used to be!

irishellie
Posts: 8
Joined: Mar 2010

I am a 7 1/2 year survivor of Rhabdomyosarcoma. I had pelvic radiation 25x plus 3 rounds of internal radiation thru vagina, as well as 12 chemotherapy rounds.  I've been "cancer free" for 6 1/2years officially.  The pain started about 4 years ago in my left hip.  My doctor told me it was bursitis and gave me shots of cordisone.  Right now the pain is horrific.  It's been pretty bad for the past couple of months and I have not gone back to my rhumatologist because I don't think it is bursitis ...I think it is from the radiation and was almost relieved to read your post.  I know your frustration and I literally 'feel' your pain.  I find that heat helps if not just to loosen it up ...the warmth feels good. I try to go in the hot tub ....get massages...etc. but sometimes nothing helps.  I take way too many advils but it does seem to relieve some of the pain...even if it is just taking the edge off. If you find anything that helps...please post it. I will do the same.  Ellie

mp327's picture
mp327
Posts: 3812
Joined: Jan 2010

I'm glad to hear you are a 7 1/2 year survivor of your disease, but sorry you are dealing with the hip pain that many of us also have after pelvic radiation.  I would have to agree with you and disagree with your doctor--it's probably not bursitis.  Have you had a bone density scan (DEXA)?  That type of scan assesses the bones for osteoporosis and/or osteopenia, which radiation treatment increases the risk of.  I've had them done a couple of times since treatment and have been diagnosed with osteopenia.  I am pretty religious about taking calcium, magnesium and Vitamin D supplements to help strengthen my bones.  I lift weights and am also a runner, so I get plenty of weight bearing exercise, which is also helpful.  I have bouts of hip pain, usually brought on by over-doing it.  I find that stretching and just keeping myself moving more helps.  I really think exercise is key.  I wish you all the best and hope you can find some relief! 

irishellie
Posts: 8
Joined: Mar 2010

I am a 7 1/2 year survivor of Rhabdomyosarcoma. I had pelvic radiation 25x plus 3 rounds of internal radiation thru vagina, as well as 12 chemotherapy rounds.  I've been "cancer free" for 6 1/2years officially.  The pain started about 4 years ago in my left hip.  My doctor told me it was bursitis and gave me shots of cordisone.  Right now the pain is horrific.  It's been pretty bad for the past couple of months and I have not gone back to my rhumatologist because I don't think it is bursitis ...I think it is from the radiation and was almost relieved to read your post.  I know your frustration and I literally 'feel' your pain.  I find that heat helps if not just to loosen it up ...the warmth feels good. I try to go in the hot tub ....get massages...etc. but sometimes nothing helps.  I take way too many advils but it does seem to relieve some of the pain...even if it is just taking the edge off. If you find anything that helps...please post it. I will do the same.  Ellie

RacheyB
Posts: 1
Joined: Feb 2013

Hey there,

 

I am so glad to have found this site., even if I am from the UK... So, Hi, I'm Rachel and I'm 28. I had cancer in my hip when I was 10. The day before my biopsy in 1994, the surgeon came to examine me, and lying on the bed I could get my left leg to raise at a 90 degree angle, but my right leg would only go 15 degrees up. I had a years worth of chemo on a three weekly cycle and 30 sessions of radio therapy. The R/T session were for three minutes a day on weekdays, zapping for 60 seconds at a time from three different angles.

In the few years after chemo, I was incredibly stiff. The kind of stiff, where you're arguing with your Physical Education teacher that you can't even put your socks on with ease, let alone trying to tackle the hurdles!

In 2002, when I became sexually active, I'd find that I ended up in immense amounts of pain if I tried any amount of adult activity. IN 2003, it became too much and I went to the doctors who reffered me to physio. I had no stamnia when it came to bedroom activities, and if I became within about (what I now know to be) 1-5 minutes of an orgasm, the pain in my hips/back/legs was so unbearbale we'd have to stop. The pain was cramp. But the tensing up would leave me in utter agony, and I did not fully ejnoy sex until a few years ago... The physio helped, but got no where close to getting me back to 'normal'

I went to uni at the end of 2003, and the concept of doing daily physio just did not fit in with the uni life. Nearing the end of uni, I started sffering more and more pains. not just one type of pain, but several.

By 2006/07 I was in constant agony, and it took for me to go back to my childhood chemo speciliast to write a letter to my (new) doctor suggesting physio would be good. By them summer of 2007 (aged 23) I could not put socks on by myself, my boyfriend had to do it. or I'd have to sit on the bed and attempt it for <15 mins. Like a drunk person trying to find the keyhole of a door...

I got referred to the phsio department again, who asked me to keep a diary of when I hurt. But I didnt produce one as I'd have spent all day, every day writing in it. I went for weekly sessions at the hospital for about 6 months and it helped amazingly. Unfortunately, the sessions stopped because other people needed the sessions / there isn't that much funding on the NHS / there was nothing else they could do for me. The six months of physio had stopped the constant agony, and given me much more flexibility, but then I was left to continue the 30-60 minutes of physio every day, at home, by myself. And this was just to keep the pain at bay.

I persisted. And persisted. But the last two years have been getting progressively worse and worse.

As mentioned, I have more than one type of pain; If i sit too long, IE more than half an hour, a toothache style pain starts in my hips and works its way down my leg and up my back, The longer I sit, the longer it takes to be able to walk like a 'normal' person. One hour of sitting, ages me about a decade. And each decade takes a minute of walking to wear off. So an hour of sittinh takes one minute of me to be walking to feel my normal self again. There's then the pain that feels like being punched in the bum every time you take a step upstairs. Then there's the pain that feel like someone is very slowly pushing an extremely sharp pin in the side of my hips when I'm sat down, and then there's the one that's caused me the most grief over the past two years.

When I stand up from a sitting position, it feels like I've banged my funny bone, but in my groin. Or that's how it was two years ago. That sensation would hit me once every six months and last for a second. It'd been that was since the late 90s. But the sensation became more frequent, like once every four months, then three, then one, then once a week, and the lenght of pain went up from a split second, to a whole second, then two, then three, then ten. And each time the frequency increased, the pain increased. To begin with, it was just a sensation, then it turned into pain, then into agony. It's been for the last year, that the pain has made me yelp when it sets in. The pain/sensation was just in my groin to begin with. half way between the inside of my leg and the outside of me hip. But gradually, over time the pain has spread. Sometimes it just shoots to the outside of my knee, other times in continues down from there, to the inside of my ankle. When the pain hits, and I stant up, it takes me from between one second and ten seconds to be able to start walking. Once I get going, I'm fine. But as soon as I stop, or sit down, I'm screwed.

 

The last six months to a year, I've really noticed a step up in the trauma. It's affecting my sleep. If I go to roll over, it wakes me up. If my leg twtictches it can wake me up. During the last three years, I've moved a few times, each time bring a whole new way of life. My first move saw my doing 30 mis of physio every day and a five mile cycle to work and back 4 times a week. The second move saw me doing 15 mins of physio on weekdays plus 15 mins of cycles along with an hour of physio each day at the weekend, I then lost my job and was doing 3 hours of physio and yoga each day, just to get me to 'base level'. I then moved again and was doing an hours worth of physio each morning and whatever yoga I could fit in. I must mention, that'd I've always had jobs where I'm on my feet and moving about all day, such as working in restauarants or coffee shops.

But as time goes on, the pain gets worse. it gets more frequent, the pain level goes up and my flexibility goes down. Like many other people, I wasn't warned of the long term side effects, and therefore not able to prepare for them, and not combat them when they arrive. As I've said, I'm 28. 28, and feel most mornings when I wake up like I'm 88. If I meet anyone above the age of 50 who complains with aches and pain, and I say I know how they feel, I get totally dismissed because someone of 28, who still gets asked for ID on a regular basis, can't possibly wake up feeling older than their years!

When I made my last move and came back to my home town, I signed up with the doctors and got an immediate transferral to the local physio department. I go once a month and just get my hip manipulated, which helps for a day or two with stiffness, but not the pain. I've also been taking Tramadol for the last year, but about six months ago they started making me really itchy, sweat so much you could see it trickle off of me, and also give me insane insomnia, as well as turning me into a complete space cadet!  So then I got Codine, which makes me constpated, therefore meaning I have to stratigically plan my meals. So currently, if the pain is really bad I start with Codine, but then go with Tramadol, but then I can't sleep, and the next day I go with Codine, but it's not as good as Tramadol and I can;t sleep because if I roll over the pain wakes me, then the next day I go with Tramadol, but I haven't emptied my bowels for a few days, and when I finally do, I spend most of the day on the toilet. Like four or five separate visits, equating to each day since I took codine. But each time, getting looser and looser and looser, until I'm just walking about and can feel a wetness between my cheeks, and then the rest of the day is spent visiting the toilet every 15 minutes while just a trickle of wetness comes out. But then, after this day, I clearly don't want to take any pain killers for a while due to their side effects, and then the shooting pain from my groin starts up again and I put up with it for a week, still continuing to do physio, and then the pain gets so bad I resort to pills on the highest dose.

And that's me now. Aged 28, 19 years after treatment, All the doctors suggest is physio. But three hours a day just isn't feesible. I'm abolsutely bored to tears with it. It brings me bouts of agony on a daily basis, where it feels like I've broken my groin, and its getting worse and worse. I won't sugar coat it for you. It's horrendous, and I should have another 50 years of life in me. I honestly do not know how I will cope. I'm barely coping now. 

Yesterday I got given a number for someone who does accupuncture, so I'll be sure to follow up that lead after reading numerous posts on this forum. I just want to try and rid me of this pain and stiffness,

I have no words of wisdom for you, only the cold hard truth that physio and excercize help, but no one can do it for you other than you. It's only ever going to get harder and you'll have to put in more work! But count yourselves lucky, most of the post I've read on this site have been from people who are around 50 years plus, and had treatment within the last five years, I've already been dealing with this for two thirds of my entire life, and I'm potentially only one third of the way through it. It sucks, it really really sucks, and until I found this website I had no idea that anyone else was dealing with the same problems as me. It's refreshing and saddening that people are in the same boat as me!

 

Any help or advice would be greatly appreciated!

 

Much love to you all

 

RacheyB

 

 

Phoebesnow
Posts: 531
Joined: Apr 2011

Hi,

 

Wow I can really relate to what you were saying about how lucky we are that this happened to us now and not earlier.  I am even grateful for the three years of my mis diagnosis.  Those were some wonderful years of me surfing some epic waves and having no worries or any pain.

 

Its a little scary to hear that things could get worse.  I have that same groin pain you describe. Sometimes I scream out loud in public.i hope and pray for some miracle to cure you.  Sounds like you are doing your best to live a normal life.  Good for you.

Labyrinth Walker
Posts: 1
Joined: Feb 2014

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.

mp327's picture
mp327
Posts: 3812
Joined: Jan 2010

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. 

Cjeepgirl
Posts: 6
Joined: May 2013

I was spontaeously falling and could not get up off the floor at all. With determination I am free of my walker and cane. I got a membership at the gym and use the treadmill to teach myself how to walk again so my gate gets back to normal. I am finding that the aquafit classes I have started make a huge difference. I am able to have more flexibility in the pool, although I have to be very careful getting out as I am very weak initially.

I'm a year out from my rad. treatments, and find the flexibility is slowly...very slowly improving.

Bgrond
Posts: 1
Joined: Feb 2016

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

silkwings's picture
silkwings
Posts: 1
Joined: Jun 2016

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!

joang67
Posts: 3
Joined: Jun 2016

I had 45 radiation session for anal cancer and my hips are now terrible. It is what I would imagine arthritis to feel like yet scans show I have none.  My oncologist calls it phantom pain, I just call it pain.

MariaBarr's picture
MariaBarr
Posts: 5
Joined: Jun 2016

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. 

 

TraceyUSA
Posts: 297
Joined: May 2013

This is a great site that I found post treatment.  I'm sorry for what your been through but glad to hear you are an 8 year survivor!  That is an inspiration!  I completed treatment (standard chemo & radiatoin protocol) in March 2013 and have received good reports since then.  I have side effects but believe they are minimal compared to some and managable for me.

-Tracey

MariaBarr's picture
MariaBarr
Posts: 5
Joined: Jun 2016

I believe my side effects are as bad because of the recurrence. My Dr's told me that I was given an unusual amount of radiation. I chose not to have surgery and when it came back the cancer board felt that I could handle another round of chemotherapy and radiation. I am grateful to be alive but wish for a solution to the side effects. 

TraceyUSA
Posts: 297
Joined: May 2013

Yes, I'm sure the double dose of radiaton has a lot to do with what you are experiencing.  As many on here have said before, radiation is the gift that keeps on giving.  I'm not sure how extensively you've look at this site but you may find some help with a specific side effect.  At this point my biggest complaint is  fecal urgency and frequency, it has become more managable (or maybe part of it is that I've become more used to it) over time.  I hope you find relief.

Well wishes, 

Tracey

lemonade
Posts: 63
Joined: Feb 2010

Hello Everyone -

I started this post in February 2010.  The good news is I am still a survivor!  I was diagnosed in July 2009.

Pain management has been an ongoing problem for me.  For 5 years I was prescribed hydrocodone, which led to addiction.  Rehab in November 2014.  I did not practice yoga, PT exercises, or water aerobics consistently during that time - wasn't thinking clearly???  DUH.  I would go up and down where I would feel better, and then stop doing the exercises.  Then start feeling bad again, and then start.

I guess I am frustrated and want to vent about where I am today.  If I don't stay on top of exercising DAILY, my muscles in the lower back and glutes get very tight, which leads to more soreness.  Water aerobics have helped the most.  I recently found out that I have a herniated disc in my lower back.  Doctor wanted to do spine injections.  I declined and bought an incline table - $120 at Academy.  Much cheaper that the co-pay for injections!  That has really helped alot too.  Stretching the spine on the table took the pressure off of the pinched nerve.  I'm really glad that I didn't do the injections.  This started as a pain in my foot.  Went to PT for several weeks and they finally took an X-ray of my back and discovered the herniated disc.  Foot pain is gone after using the inversion table.  Yeah!  Blood flow to the back helps all of the nerves in the pelvis.  I also have an accupressure mat.  I will try anything to get rid of back pain.

If anyone has any input on how to make the muscles more supple, I would really like to know.  It seems like I am starting at square one every day to try and get loosened up.  My gyno recently prescribed Estrace (estrogen hormone therapy) to help with grumpiness and general bad attitude from menopause.  I have only been on it for about 2 weeks.  This seems to have helped.  I am hoping it will help with overall muscle tone.  The nurse said it should help.  I wish I had started this post radiation with the onset of menopause.  I did use the Estrace cream and dialator for vaginal stenosis immediately after radiation.  That helped.

It is so hard to know what is wrong, since it is a complex situation - herniated disc, pain in buttocks, muscle tightness, depression, anxiety fatigue, etc. etc. etc.  I also have a torn rotator cuff - again - but that is a different area of fun.

I have really had problems with depression in the past.  Stephen Ilardi's book - "The Depression Cure" has helped a great deal.  He prescribes a more natural approach to depression treatment.  You can check out his info on YouTube, or Amazon for the book.

Anxiety and pain makes it extremely difficult to get started in the mornings.  Anxiety usually subsides around noon - thank goodness.  Fatigue is constant.  I really have to force myself to go and walk in the morning.  I have learned that when I do, then I feel better.

I guess management after treatment is a multi-sided approach.

Depression - Anti-depressants didn't seem to work anymore so I read "The Depression Cure" by Dr. Stephen Ilardi.

Anxiety - Exercise, walking, sunshine

Tight muscles - Water aerobics, yoga, stretching

Back pain - Inversion table, heating pad, ice

Diarrhea (daily) - Recently developed this in the last few months.  Metamucil has helped.  Still trying to figure this one out.  Gyno said it may be due to post radiation damage.

Sit Bone pain - This is a new one this month.  Sitting at computer, dinner table, or in the car really hurts.  Went to orthopedic dr. yesteday and he referred me to a pain management doctor.  Was hoping for a cortisone shot or something to relieve that pain.  He said I have a complex problem because of the radiation.  I am hoping to find info on this site before I try a pain management doctor.

It seems like it is a full-time job to feel somewhat normal.  Any feedback would be appreciated.  I wish you well.

Barbara 

 

mp327's picture
mp327
Posts: 3812
Joined: Jan 2010

I am glad to see your post and thank you for sharing all of this with us because I think there are many things going on with you that some of us can relate to, including myself.  I live with chronic pain now, especially in my back, hips and knees, along with stiffness in the entire pelvic area.  When I crawl out of bed in the mornings, I feel as if I've been hit by a bus and my hip and back pain wakes me up in the night almost every night.  It can take me a couple of hours after rising to move without pain or discomfort.  I have taken to applying moist heat to my lower back every morning and I use a product similar to BenGay at night on my back and also my knees.  Since my sleep is often interrupted, fatigue is an issue as well.  It is difficult to be motivated to exercise when one is in pain or tired or both, but I, like you, make myself do it.  I am still able to run and I also lift weights, which makes me feel stronger.

My bowels will never be the same.  Since your bowel issues have recently come on, you most likely have late onset radiation proctitis.  This is what I deal with as well.  My best friend has become a generic form of Imodium, which I take almost daily.  I also have malabsorption syndrome, meaning my intestines are not doing their job of absorbing nutrients from food, nor do they absorb fats, thus I don't gain any weight.  I am pretty steady at 95 pounds these days.  When I eat fatty foods or raw fruits/veggies, it all just zooms right through me.  When I consume fats is the worst--not only do I have the usual diarrhea, but it is greasy.  Due to the lack of absorption of nutrients, my hair has thinned and my bones are suffering.  I don't think there is much that can be done to help with the hair situation.  As for my bones, I have osteoprosis.  Due to the malabsorption, I could probably consume calcium rich foods all day long and it would do no good.  In October 2015, I was diagnosed with Stage 3 Chronic Kidney Disease, which, with changes in diet and hydration, has improved to Stage 2 at last check.  Whether or not this is in any way connected to the treatment is unknown.

I have had numerous episodes of small bowel blockage, one sending me to the hospital, at which time I was admitted.  They are excruciatingly painful and life threatening, so I have to be careful as to what I eat.  With all my various issues, it's really hard to know what or what not to eat.  I just do the best and I can and pray that it doesn't come back to haunt me.

The only thing I can tell you is to just find the best ways you can to deal with the issues.  My doctors have been of minimal help and it has been quite frustrating.  I feel your frustration and can really empathize.  Sometimes I do wonder why and how I keep on going, but 99% of my days turn out to be good, even though they might not start out that way!  I totally agree with your statement that it does seem like a full-time job just to feel even close to normal.  We both just have to hang in there!

Martha 

dawn7767
Posts: 3
Joined: Jun 2014

I am 6 years cancer free. However about 2 years ago I also stared having uncontrollable bowel issues. Sometimes it is fine and other times I'm running to the restroom, sometimes not making it, which is very embarrassing.  I can not pin point what foods/drinks trigger it.  I started taking a probiotic which has helped some.  I was just wondering if anyone has any other things that they have tried that has helped.  I am looking for any ideas

Thanks

Dawn

dawn7767
Posts: 3
Joined: Jun 2014

I am 6 years cancer free. However about 2 years ago I also stared having uncontrollable bowel issues. Sometimes it is fine and other times I'm running to the restroom, sometimes not making it, which is very embarrassing.  I can not pin point what foods/drinks trigger it.  I started taking a probiotic which has helped some.  I was just wondering if anyone has any other things that they have tried that has helped.  I am looking for any ideas

Thanks

Dawn

mp327's picture
mp327
Posts: 3812
Joined: Jan 2010

The cause of your issues could be late onset radiation proctitis--see my post above.  I believe that is true for me.  I had bowel issues--diarrhea, occasional loss of control--during and right after my treatment, which went on for a few months, then subsided.  However, I am now almost at the 8-year survival mark and within the last year or more have had episodes of the same on a regular basis.  Please read my above post about my malabsorption issues too.  If you google radiation proctitis, you'll see that there are two different types--early and late onset.  For me, caffeine, alcohol and fatty foods can all be triggers.  I now take Imodium almost daily.

Martha

clouse
Posts: 12
Joined: Oct 2016

Has anyone experienced severe vaginal pain? Half way thru radiation and chemo, the radiation Dr gave me some diflacam. Wondering is it yeast or from the radiation. I am feeling the latter. See the Dr Tues and will talk to him about it. For everyone fighting the fight God bless. 

Love and light, Shelley

eihtak
Posts: 1159
Joined: Oct 2011

Yes, I did have vaginal pain from the radiation. While the beam is set to "zap" the anal tumor and possible lymph nodes, the field of burn travels throughout the digestive system and any thing else in the area. 6 yrs post radiation I still have vaginal stenosis as a result (a shortening, tightening of the vaginal canal) It was recommended to me to use dilators on a regular basis starting a few months after treatment ended. There are some who use them "during" treatment, some immediately after, and some within a year or so, and then many who never do at all......While I was good about it for a while, I tend to kind of slack on regular use these days.

This is something to discuss with your radiation doctor for their opinion as well.

katheryn

pializ
Posts: 446
Joined: Nov 2012

I had a problem with vaginal pain and irritation during treatment. I had diflucan for a while but it affected my liver function so I had to stop. But I found help with an antihistamine.

Hope you find some relief.

Best wishes

Liz

Kmessier's picture
Kmessier
Posts: 31
Joined: Nov 2016

I'm in my second round of chemo/rad for anal/ breast / non-Hodgkin's lymphoma so my hip pain is from the radiation?? is there anything to be done for it?? I take Morphine extended release and dilau for break through pain but I also suffer from debilitating diarrhea and rad burns but my hips hurt and bad lower back pain

eihtak
Posts: 1159
Joined: Oct 2011

I agree with Martha, you have so much going on and while its all related, I'd seek your doctors opinion on such hip/back pain as soon as possible.

katheryn

mp327's picture
mp327
Posts: 3812
Joined: Jan 2010

I think the best thing to do is bring this hip/back pain to the attention of your doctors immediately.

Kmessier's picture
Kmessier
Posts: 31
Joined: Nov 2016

Well no help from my doctors they say I shouldn't have hip and back pain but I do and bad especially my sacrum 

Kmessier's picture
Kmessier
Posts: 31
Joined: Nov 2016

I have problems with my bladder because the radiation travels through my bladder to the tumor and lymph nodes and because of my multiple sc I have what is called a crap can't get the word out but my bladder doesn't work anymore and I have to catheterize myself every time I have to urinate all of this is driving me nutty

Kmessier's picture
Kmessier
Posts: 31
Joined: Nov 2016

Sorry just ranting!! 

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