Radiation. Tell me all about it.

I did chemo,and radiation at the same time,but from the radiation I got stomach cramps toward the end of 6 weeks.I also got very tired.I would feel like I had to go to the bathroom,but sometimes it would be just gas,but my butt got very sore,even gas was painful,but the doctor gave me some creme to put on it to make it numb.The worse part was the loss of energy,I felt better when I slept alot.I was also given pain pills to take that was a big help.Good luck.

I am doing radiation now along with xeloda....my radiation is a little different....5 treatments every other day. Wed.and Fri. last week and Mon., Wed., Fri. this week. I think it is a higher dose, shorter time. The Dr. said the most I should feel is fatigue, especially about 2 weeks after the last radiation. I am already fatigued from xeloda so I may not notice. The nurse said there may be little burn, but not too bad, at the radiation sites. I haven't notice anything different after 2 treatments, will keep you updated if there is a change. I hope your treatments go well and you enjoy your stay in the city.   Sending positive thoughts.....~ Ann

John23 said:

Trubrit –

You have a right to be apprehensive, and a perfect right to be extremely anxious.

I have a “cyberfriend” in Tennessee that had radiation years ago and is now dying from the aftermath of that radiation. Her insides are rotting away and there’s nothing any physician can do.

Her story isn’t rare, it’s not “uncommon”. But it might depend on the intensity of the radiation and area that is being radiated.

CSN is a great forum, but you’ll find that you’ll get more “feel good” comments than you will get stories of horror; no-one wants to tell you bad things and cause you to have more fear….. And those that may be that honest get chastised for being so callous.

There are plenty of good websites and forum that deal with radiation after-effects and damage. You should really visit some of them and read the stories.

It’s always been my belief that we should listen to our own survival instincts; our own intuition, and allow those basic instincts to guide us.

If there’s something inside you telling you something is not a good idea, don’t be afraid to listen to it.

It’s that instinct that keeps animals alive in the wild; we were designed having that same instinct.

“Trust thyself”

Hoping for your better health,

John

"CSN is a great forum, but you’ll find that you’ll get more “feel good” comments than you will get stories of horror; no-one wants to tell you bad things and cause you to have more fear.." ~John23

John, have you met me?

Though I don't operate from the fear perspective - I just bring the truth about my direct experiences when I talk to people...to educate them...not make them fearful.

I would imagine Sue that you have read enough from me to know that I don't hold true to the above reference....I always tell it like it is....at least, how it was for me...

Well, first, Sue...there won't be anything that I will say that will or should dissuade your decision one way or the other.  Radiation is often times necessary as treatment to reduce tumor size that would allow for a surgical resection.  That is its primary intention. 

My story will differ from those that you've already read...because, it was my experience and it was not the norm as I've read from other stories.  Many people seem to do well with it from what I've read....though there seems to be alot of filler left out....lot more to it than 'fatigue' and a little burn....that's a given. 

Let's get started and see what I can do to fill in those missing blanks...and provide you a clear understanding of what you are facing...

I've done 3 kinds of radiation...external beam (25x both hips / rectum / sacral, lower back area).   *** Cyberknife radiation (3x liver)  ***  IMRT (30x w/5fu in right lung)

I'm assuming you're doing radiation in the colon to allow for resection? 

I believe that you will do the pump, Sue and not Xeloda here...they want you on a constant 24/7 drip for the entire 6-weeks...it increases the efficacy of the radiation. 

Ok, so radiation is cumulative...you'll probably skip through the first 2-weeks and then start to notice a difference in week #3...from there, fatigue will begin to set in and increase through the end of your treatment...and really for at least 2-weeks beyond the end of treatment....really closer to a month before you feel some of your zip returning. 

My first time with radiation, I worked through most of it, but at the end started to miss a few hours in the day...but I still drove to and from treatments on my own.  But, it really zapped my strength at the end and I spent most of my days in bed...and the last week, I was unable to work...and barely able to dress myself and drive to the treatment center....I spent all of my other time in bed....like 21-hours a day for a couple of weeks...dead to the world.

And that's when I was strong....just starting out fresh...

And yes, there will be bowel issues and digestive issues with nausea etc....

Let's think about what is happening...you've had a very bad sunburn once or twice in your life, haven't you, Sue? You know what that feels like?  Know what it looks like externally?

Now...that's you...but on the inside...

Radiation treatments are permament...and once that area has been treated...it can only be treated that one time. 

It is right, that you never really feel the beams or anything like that....even at the end....though at the end, you are feeling burning from the exposed area...and you're beginning to feel the skin tighten in that area.....but what if we could see the inside?

What you would see would be lots of inflammation and scar tissue forming and or expanding. 

The rectum radiation did a pretty good number on me....one morning, I excreted something out that horrified me like nothing else ever had.  When I looked down in the toilet bowl, it looked like that baby creature in the movie Alien....it was this husky looking and funny shaped thing.

I freaked...it looked like I had $hit my insides out...

When I asked the doctor about it, he told me it was my actual intestinal lining sloughing off and dropping into the bowl - much like a snake sheds its skin. It was unnerving the first time, because I had no idea what had happened....but subsequent events with the same result (even when you knew what it was) never really made me feel more at ease.  It was quite shocking and unnerving...even for me.

Sterilization...depending on one's age, this might be a moot point...BUT, if it still applies, then it's important to consider, because your oncologist probably won't bring it up.  And the chances are that doing radiation as a male, will render you sterile...and doing radiation as a woman can and usually results in early menopause and lots of hormonal changes. 

It would be important for folks of child-bearing age to know this in advance, so that they could submit semen samples and/or have eggs frozen in the event of this scenario...

Sexual Dysfunction...here's one we won't talk about...BUT I will...

I won't wear you out with the male side of this story...but I can tell you some about the female side of this story. 

You have to watch out for Vaginal Atrophy...the radiation will shrink these tissues tremendously and as a result, the vaginal cavity will itself become smaller and in some cases can close up completely.  I've read women's stories of how some of their feminine parts were mutilated from the radiation. 

It's just as bad in the man...but we're talking women right now...

This makes sense really....have you ever noticed when you throw a hot dog out on the grill....how it shrinks from bigger to smaller as it's cooked?  That's what happens to a man or a woman...the insides of our sexual organs are cooked...and they constrict as a result. 

Now...what to do?

One thing I'd like you to run by your radiation oncologist is..."Should I leave my bladder FULL during radiation treatment?"

This is potentially important...I did all of mine on an empty bladder...and as a result I suffered alot of permanent knowledge...from the treatment and the lack of wisdom from my (then) medical team.  There seems to be some protection from having the bladder full and distended from what I've read.

The other thing is how to keep the vaginal cavity from closing shut...what I've heard other women doing is inserting a dildo when they take their morning shower...apparently, it has to be done everyday...for the rest of your life....when they take a break and stop doing it, even for a little bit, they report having setbacks as it tries to move back the other way and then its difficult and you have to start over again.  You have to keep the area stretched and somewhat flexible in order to avoid pain during sexual intercourse, or any type of vaginal introduction.  There is a place to order them on the web...I remember the gals chatting about it (not on this board)...apparently they come in graduated sizes...so they start small and gradually work their way up to their own comfort zone.

I know I can get one of the ladies I know to give me a website and some info I could pass along to you....and I would be happy to. 

Urination...could also become an issue...just trying to do the basics like urinate can be extremely painful for awhile.  It can be difficult to void your bladder completely...the urine stream could be diminished in pressure and strength...and it can flat out burn like hot fire when you do pee. 

If you think about a wild, raging forest fire burning out of control...that's what's happening to all of our internal tissues after the introduction of radiation...and the aftermath of the radiation treatment...it keeps giving for awhile.

The doctor explained it to me this way...for lower body radiation treatments, the radiation enters the body one way....through the hips and up your tailpipe...and up the small of your back.  Once radiation is inside you, it has only one way to leave.  (the guy drew me a map)

And the route differs slightly due to our anatomical differences...but it comes out of that exits...everything in between Point A and Point B gets torched real good. 

And it takes quite a bit of time for those sensitive issues to heal and recover...it took me a couple of years...

Lastly...let's talk about Hip and Back problems...

I have what is called AVASCULAR NECROSIS...this is a serious condition.  It is lack of blood flow to the hip joints...which over time, results in the death of the joint...I've got it in both hips...in my Femoral Head...the only cure for it is a hip replacement...when it gets so bad that my hips fracture from the collateral damage.

Which by the way, Sue...my last treatment was 9-years ago...and I suffer more with it everyday...it's really changed for the worst this past year...my back too...I can barely move anymore...and in constant pain...last 3-months have been the worst...can hardly lay down now.  They radiated me hard me in my sacrum and lower parts of my back.  Tying my shoe laces and getting dressed are like Olympic Events anymore.   Yoga are anything like that is physically out of the question.  If I get down on my knees I can barely get back up. 

Radiation just shot my wheels...

Right now, being out of treatment, my condition has returned to 'Stable'...but the joint will continue to weaken over time...until it finally gives way...just don't know when...

What causes Avascular Necrosis?

Good question, Sue...two of the primary culprits are Radiation and not surprisingly...Chemotherapy.  I will tell you that the radiation is actually the heavy hitter in this instance, although doing all of the chemo I did certainly did not help the situation either.

The lung radiation was a different story...but we can save that one for another time:)

I'm sure that your story will not turn out anything like mine...my case has never been the norm up here...I'm always against the grain it seems...BUT, my story lets you know about the worst-case scenario...and you also know after reading it, that you can still shine on like I'm trying to do.

I wish you well for your treatment and know it will be just fine for you.  Absolute best of luck!  Let me know if you have any questions. 

-Craig

Sundanceh said:

Thanks to John...Now, I Have to Post...

"CSN is a great forum, but you’ll find that you’ll get more “feel good” comments than you will get stories of horror; no-one wants to tell you bad things and cause you to have more fear.." ~John23

John, have you met me?

Though I don't operate from the fear perspective - I just bring the truth about my direct experiences when I talk to people...to educate them...not make them fearful.

I would imagine Sue that you have read enough from me to know that I don't hold true to the above reference....I always tell it like it is....at least, how it was for me...

Well, first, Sue...there won't be anything that I will say that will or should dissuade your decision one way or the other.  Radiation is often times necessary as treatment to reduce tumor size that would allow for a surgical resection.  That is its primary intention. 

My story will differ from those that you've already read...because, it was my experience and it was not the norm as I've read from other stories.  Many people seem to do well with it from what I've read....though there seems to be alot of filler left out....lot more to it than 'fatigue' and a little burn....that's a given. 

Let's get started and see what I can do to fill in those missing blanks...and provide you a clear understanding of what you are facing...

I've done 3 kinds of radiation...external beam (25x both hips / rectum / sacral, lower back area).   *** Cyberknife radiation (3x liver)  ***  IMRT (30x w/5fu in right lung)

I'm assuming you're doing radiation in the colon to allow for resection? 

I believe that you will do the pump, Sue and not Xeloda here...they want you on a constant 24/7 drip for the entire 6-weeks...it increases the efficacy of the radiation. 

Ok, so radiation is cumulative...you'll probably skip through the first 2-weeks and then start to notice a difference in week #3...from there, fatigue will begin to set in and increase through the end of your treatment...and really for at least 2-weeks beyond the end of treatment....really closer to a month before you feel some of your zip returning. 

My first time with radiation, I worked through most of it, but at the end started to miss a few hours in the day...but I still drove to and from treatments on my own.  But, it really zapped my strength at the end and I spent most of my days in bed...and the last week, I was unable to work...and barely able to dress myself and drive to the treatment center....I spent all of my other time in bed....like 21-hours a day for a couple of weeks...dead to the world.

And that's when I was strong....just starting out fresh...

And yes, there will be bowel issues and digestive issues with nausea etc....

Let's think about what is happening...you've had a very bad sunburn once or twice in your life, haven't you, Sue? You know what that feels like?  Know what it looks like externally?

Now...that's you...but on the inside...

Radiation treatments are permament...and once that area has been treated...it can only be treated that one time. 

It is right, that you never really feel the beams or anything like that....even at the end....though at the end, you are feeling burning from the exposed area...and you're beginning to feel the skin tighten in that area.....but what if we could see the inside?

What you would see would be lots of inflammation and scar tissue forming and or expanding. 

The rectum radiation did a pretty good number on me....one morning, I excreted something out that horrified me like nothing else ever had.  When I looked down in the toilet bowl, it looked like that baby creature in the movie Alien....it was this husky looking and funny shaped thing.

I freaked...it looked like I had $hit my insides out...

When I asked the doctor about it, he told me it was my actual intestinal lining sloughing off and dropping into the bowl - much like a snake sheds its skin. It was unnerving the first time, because I had no idea what had happened....but subsequent events with the same result (even when you knew what it was) never really made me feel more at ease.  It was quite shocking and unnerving...even for me.

Sterilization...depending on one's age, this might be a moot point...BUT, if it still applies, then it's important to consider, because your oncologist probably won't bring it up.  And the chances are that doing radiation as a male, will render you sterile...and doing radiation as a woman can and usually results in early menopause and lots of hormonal changes. 

It would be important for folks of child-bearing age to know this in advance, so that they could submit semen samples and/or have eggs frozen in the event of this scenario...

Sexual Dysfunction...here's one we won't talk about...BUT I will...

I won't wear you out with the male side of this story...but I can tell you some about the female side of this story. 

You have to watch out for Vaginal Atrophy...the radiation will shrink these tissues tremendously and as a result, the vaginal cavity will itself become smaller and in some cases can close up completely.  I've read women's stories of how some of their feminine parts were mutilated from the radiation. 

It's just as bad in the man...but we're talking women right now...

This makes sense really....have you ever noticed when you throw a hot dog out on the grill....how it shrinks from bigger to smaller as it's cooked?  That's what happens to a man or a woman...the insides of our sexual organs are cooked...and they constrict as a result. 

Now...what to do?

One thing I'd like you to run by your radiation oncologist is..."Should I leave my bladder FULL during radiation treatment?"

This is potentially important...I did all of mine on an empty bladder...and as a result I suffered alot of permanent knowledge...from the treatment and the lack of wisdom from my (then) medical team.  There seems to be some protection from having the bladder full and distended from what I've read.

The other thing is how to keep the vaginal cavity from closing shut...what I've heard other women doing is inserting a dildo when they take their morning shower...apparently, it has to be done everyday...for the rest of your life....when they take a break and stop doing it, even for a little bit, they report having setbacks as it tries to move back the other way and then its difficult and you have to start over again.  You have to keep the area stretched and somewhat flexible in order to avoid pain during sexual intercourse, or any type of vaginal introduction.  There is a place to order them on the web...I remember the gals chatting about it (not on this board)...apparently they come in graduated sizes...so they start small and gradually work their way up to their own comfort zone.

I know I can get one of the ladies I know to give me a website and some info I could pass along to you....and I would be happy to. 

Urination...could also become an issue...just trying to do the basics like urinate can be extremely painful for awhile.  It can be difficult to void your bladder completely...the urine stream could be diminished in pressure and strength...and it can flat out burn like hot fire when you do pee. 

If you think about a wild, raging forest fire burning out of control...that's what's happening to all of our internal tissues after the introduction of radiation...and the aftermath of the radiation treatment...it keeps giving for awhile.

The doctor explained it to me this way...for lower body radiation treatments, the radiation enters the body one way....through the hips and up your tailpipe...and up the small of your back.  Once radiation is inside you, it has only one way to leave.  (the guy drew me a map)

And the route differs slightly due to our anatomical differences...but it comes out of that exits...everything in between Point A and Point B gets torched real good. 

And it takes quite a bit of time for those sensitive issues to heal and recover...it took me a couple of years...

Lastly...let's talk about Hip and Back problems...

I have what is called AVASCULAR NECROSIS...this is a serious condition.  It is lack of blood flow to the hip joints...which over time, results in the death of the joint...I've got it in both hips...in my Femoral Head...the only cure for it is a hip replacement...when it gets so bad that my hips fracture from the collateral damage.

Which by the way, Sue...my last treatment was 9-years ago...and I suffer more with it everyday...it's really changed for the worst this past year...my back too...I can barely move anymore...and in constant pain...last 3-months have been the worst...can hardly lay down now.  They radiated me hard me in my sacrum and lower parts of my back.  Tying my shoe laces and getting dressed are like Olympic Events anymore.   Yoga are anything like that is physically out of the question.  If I get down on my knees I can barely get back up. 

Radiation just shot my wheels...

Right now, being out of treatment, my condition has returned to 'Stable'...but the joint will continue to weaken over time...until it finally gives way...just don't know when...

What causes Avascular Necrosis?

Good question, Sue...two of the primary culprits are Radiation and not surprisingly...Chemotherapy.  I will tell you that the radiation is actually the heavy hitter in this instance, although doing all of the chemo I did certainly did not help the situation either.

The lung radiation was a different story...but we can save that one for another time:)

I'm sure that your story will not turn out anything like mine...my case has never been the norm up here...I'm always against the grain it seems...BUT, my story lets you know about the worst-case scenario...and you also know after reading it, that you can still shine on like I'm trying to do.

I wish you well for your treatment and know it will be just fine for you.  Absolute best of luck!  Let me know if you have any questions. 

-Craig

 

Thank you!

I was hoping that my post would generate enough controversy to get both sides to post experiences.

Apparently it works, since you responded quite well (I wonder if you would have done so otherwise?).

We have enough fear of any toxic or harsh treatment without anyone adding to it by offering seriously bad experiences, but most people fear cancer and dying more than the toxic treatments.

Therein lies the problem. How much of good or bad should one be informed of?

I posted an article from the New York Times, telling of some of the horrors radiation had caused. It’s an old article, but nothing has changed. A local major medical center here in Florida had charges filed against them for the misuse of radiation therapy; that was about two years ago. Not much has changed.

So Craig: “Thank You” for tactfully “telling it like it is”. You’re here and alive. If it’s a attributable to Radiation therapy or not, only you and/or your physicians can tell. If it was worth it or not, only you can address.

We can only make informed decisions when we have the information to do so. Personally, I prefer to hear from those that have first-hand experience, than a physician’s opinion.

Best wishes!

John

Sorry Sue...i didnt read your post well enough...just the title. I didnt mean to discourage...hope all goes well!

AnnLouise said:

If I read Sue's post correctly she said a few positive experiences would lift her spirits. I gave her a positive experience and feel that it was used as a controversial issue. All I can share are my own personal experiences, and fatigue and a little burn is what I have experienced so far. I am trying to live and make my decisions based on a number of things. I can respect others opinions and links and experiences but please also respect mine.......a positive attitude and good experiences is what keeps many of us going on a day to day basis. Once again, Sue,I hope you do well with your treatment and I am with you all the way......sending positive thoughts. ~Ann

-

I had radiation treatments in between 2 eight week sessions of Folfox following my surgery for rectal cancer.  Along with the radiation I continued the chemo 24/7 for the first few weeks of radiation.  I worked throughout the radiation treatment.  I had fatigue towards the end of the treatment and afterwards for a bit.  I did have digestive and bowel issues starting with the third week or so and still do today although that could also be due to my surgery or chemotherapy.  I did have mouth sores, and foot blisters - both which were treated successfully with appropriate medicine.  I have not had recurrence in my rectal area three years out - so - so far, a success since that's why we did the radiation.

My best wishes to you for an uneventful treatment.  

I would do it again.

What does your treatment plan look like? During my very long journey I've yet to have radiation. However, the opportunity is here and I'm going for it. I've been able to control (and also get rid of) numerous small spots of cancer that I've had in my lungs over the past years by having Erbitux and Irinotecan, both newer targeted therapies, along with RFA's. Now it appears that the remaining area is a lymph node around where my bronchial tube splits above my lungs.

I'm going to have it radiated by Dr. Yamada using this method. It will be 3 treatments, every other day, lasting roughly 20 minutes each. Of course it's not without risks (as well is my commute into NYC) but the benefits outweigh the risks for me and if things go well I could be looking at an extended break from chemo to say the least.

Is your treatment going to run over many weeks? I understand that is how they often treat tumors with radiation but this new-ish method (yes, it's new-ish) delivers a higher dose but it's targeted so it does less harm to the healthy surrounding tissue. Do you know if this option is available for you?