Radiation Side Effects

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

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 

mp327 said:

Barbara

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 

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

sherinc said:

Radiation "The gift that keeps on giving"
I had the same at 30 treatments from all sides and am facing many of the side affects I have read from this site. Also the loss of,before radiation " healthy tissue" I will have surgery in Jan.13. I can finally boast that I have tatoos. lol

I dont know where my texts keep going but I have severe hip and back upper middle since I had WBRT in early July this year. I feel like an invalid if I dont take my pain meds gonna try and post 

Ann_i_ said:

Psoriasis with colostomy
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.)

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 ****. Best of luck.

Love and light

Shelley

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

clouse said:

Vaginal pain

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

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

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

clouse said:

Vaginal pain

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

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

westie1981 said:

hemorrhoids

Hi there I am very new to this site and newly diagnosed with anal cancer just 2 weeks ago.  I have Crohn's disease which I have been treated for with an immunosuppressent just 8 months or so ago.  I had a routine colonoscopy and asked the surgeon to pleeaaase take off the hemorroids as they are excruciating.  He just said no it would have to be by general anaesthetic.  This was done within weeks.  It was really sore and the sutures came out unintentionally, so it was an open wound, it became infected, no follow up was needed I was told when discharged. 7 weeks went by and I had a telephone call from the hospital with an appointment to see an oncologist!  2 very intense days were spent trying to get answers from my doctor, the hospital etc.  It turns out I have squamous cell carcenoma and thought he sample was clear on one side the other side was in doubt so it means going through surgery again and removing the Crohn's portion of my bowel too.

I am feeling very let down by the doctor who removed the lump.  How long does a biopsy take to test? Is it normal to take 7 weeks?  I'm not sure what further treatment is needed but the thought of radiotherapy 'there' horrifies me.  Are there any alternatives?

My gp's have treated me for hemorroids for at least 12 months without even examining me, this can't be right can it? I've moaned about them enough and the fact the creams did nothing. They have also said the immunosuppressents could have caused this cancer. I'm so confused by all this and feel very let down by the medical professionals I have seen.

I became angry as I read your post and learned how long it took for you to get your biopsy results.  This is SO not right.  I was diagnosed in 2008 and my doctor had my biopsy results within a few days.  I am so sorry that your journey has gotten off to such a bad start.  I hope that things will go better from here on out and that the other doctors who will be involved in your treatment have experience in treating anal cancer. 

I can understand your fear about radiation, as it can be a tough road for some people.  However, the course of treatment is relatively short, as compared to treatment for other types of cancers.  Typically, it will be 5-6 weeks at most, and there are lots of things that can be done to relieve some of the bad side effects.  You are already hooked up with all of us here and I can tell you the advice from those who have been through this already can be invaluable.  There are many here who will be forthcoming with tips and advice to help you get through this.  All you need to do is ask.

So that you are well-informed about what lies ahead regarding treatment, I urge you to get on the website for the National Comprehensive Cancer Network at www.nccn.org.  You will need to do a quick registration first, but then you'll have access to the latest guidelines for the treatment of anal cancer, along with a lot of other good information.  Education is key when talking to your doctors about treatment.

As for alternative treatments, there are none that I am aware of.  This treatment (chemo/radiation) has a high rate of success.  It will not be a fun few weeks, but getting the most successful treatment is what will rid you of cancer.  I wish you all the very best and hope that you'll keep us updated as you move towards getting a treatment date and plan.  You can do this!  Take care.

Martha