Radiation Side Effects

desertdweller said:

radiation side effects
I also completed chemo/rad in October 2009. Since then I had a colostomy (permanent)May 2010 as the chemo/radiation did not work.The wound abcessed and had a 2nd surgery in Sept 2010 since that time I have home health nurse went on a wound vac and now preparing for hyperberic to try to heal the wound. My lower back and lifting and moving in general is very difficult. From what my Doctors say all of my problems are a result of radiation..if I had to do it over I would never have had the radiation treatment, it did much more damage than good. My Doctors never advised on these severe side effects. My life has changed drastically over the past 11 months and feel like it will never improve. I live off of Oxycodone Oxycontin and Lyrica without which I would not be able to move. I am hoping that this wound, which needless to say, is a pain in the a--!!literally. In addition to the anal cancer I have very severe psoriasis which is also contributing to my pain levels. Life is not fun at the present.

radiation side-effects
So sorry to hear that you have had so much pain. If you are interested in alternative medicine, you might try acupuncture, herbs, and energy healing work, like Reiki.
Hugs to you

lemonade said:

P.S. - female parts
My female parts feel screwed too - and not in the good way.

Barbra
Hello Barbra,

I sure hope you will find a support group for your pain, or even a pain management facility to help ease as much of the pain as possible. I have read where anal cancer survivors do yoga to increase the flexability of the damaged areas from the radiation. Please look into the pain management, its terrible enough to have to go through this tx and then not be able to enjoy your life makes the tx that much worse. I hope you will find some relief. Lori

Angela_K said:

Flexibility
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

Wow...this thread was very
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

ina2525 said:

Radiation Side Effects
4.5 years ago, when I was diagnosed with early Stage 2 anal cancer, this site did not exist. I had the standard chemoradiation treatment (called the Nigro Protocal) and ended up hopsitalized for 2 weeks because of the radiation burns, pain, no white blood cells etc. However, I am a VERY grateful cancer survivor!! Truth of the matter though, no one told me much about treatment, let alone addressed long term side effects. I did as much research as the internet allowed me to in 2006.

Like one of the posters on this site, I felt like I had aged 15 years or so after treatment. Luckily, I have been an ardent gym type for the past 12 years and this came in very handy when I was healing because I had established a standard of physical agilty, strength and cardivascular fitness. It took me at least a year of intense working out before I reached my prior level of fitness.

Like all who have posted, I have serious hip issues. I have gone from no arthritis to advanced arthritis in the left hip in 4.5 years. I took up yoga 3.5 years ago (yin yoga is my preferred type) and this has really helped to keep stiffness at bay and maintain range of motion. I highly recommend yin yoga for all those whose who have survived this most difficult treatment.

One of my many take home lessons is that movement is good, stagnation not so good. Or put another way, if you don't use it, you lose it.

I have a very clean diet, don't smoke, don't drink alcohol, try to eat organic, eat no processed foods, no white or white sugar and am moving to a plant based diet. I have taken an interest in Traditional Chinese Medicine and highly recommend Paul Pitchford's authoritative book, "Healing with Whole Foods: Asian Tradition and Modern Nutrition".

I wish you all the best of luck as we continue our healing journey!!

How is the Natural/Organic Diet Going
Hi There...
I too dont smoke (never have) and drink wine once in a while. I moved to an 80% all natural/organic diet and am taking Curcumin to help with precancer cells. How is the diet working for you? Were on it before you came down with cancer?

My doc found a 3cm growth in my anal canal today and will be doing surgery on June 7th at which time I will find out if it's cancer or not. She said it doesnt feel like a cancer but cant tell until it's removed.

Thank you for your encouraging testimony of your healing journey.

Jim

Hi, I am glad I found this
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...

Captain11 said:

Hi, I am glad I found this
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...

bleeding
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 said:

Hi, I am glad I found this
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...

Unbalanced
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.

sephie said:

bleeding
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

blood
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 said:

doctor
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.

Hi, Worden4... I haven't had
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.