Surviving radiation for rectal cancer

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So Cal David
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Joined: Tue May 24, 2011 2:20 pm

Surviving radiation for rectal cancer

Postby So Cal David » Sun Feb 19, 2012 1:00 pm

I have 19 of 28 radiation treatments down. I am doing the 5FU 24X7 and radiation therapy for rectal cancer. Last scheduled radiation is March 1.

I am experiencing tremendous pain as a result of the radiation. Pardon my lack of modesty but passing a stool is like shiting razor blades. The doctor has prescribed proctofoam and proctocream, neither of which do much of anything for the pain.

I plan to call the doctor tomorrow and lay out my case for mercy. I am not sure what mercy will look, perhaps a couple of weeks off to recover before completing.

Any suggestions on how to handle the pain? An off the radar treatments like acupuncture etc. give you relief?

teacher49too

Re: Surviving radiation for rectal cancer

Postby teacher49too » Sun Feb 19, 2012 1:54 pm

Been there. Last week of 28 rad tx's I had open weeping blisters externally and internally having a bowel movement was like passing hot lava. Excruciating.......my low point was during one of those episodes when the power went out......makes you feel pretty vulnerable.

Things that helped:

Silvadene cream for external
Squirt bottle ready at hand of room temp water to bathe perianal area and cut the burning sensation.
Tucks medicated pads....also seemed to anesthetize the area.
Vicodan! I could not function with that pain...unless I had a Vicodan to take immediately to minimize the burning pain within 15-20 minutes.

That pain lasted from Week 5 to 3 wks after RAD tx ended and then much better. IT will get better!

lauragb
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Re: Surviving radiation for rectal cancer

Postby lauragb » Sun Feb 19, 2012 2:20 pm

Also been there. I am sorry to hear you are going through this. I did deep breathing while having BMs. I also did sitz baths 2-3 times a day with Domeboro Astringent powder in them. This gave me some relief but I still had
a lot of pain. It started getting a better a few weeks after treatment ended.

Hopefully the doctor can give you some pain meds or some type of numbing cream although lidocaine does become an irritant so I'd suggest staying away from it. Using a peri-anal bottle of warm water also cuts down on the wiping. The less wiping, the better, which is easier said than done. I'm looking into getting some type of bidet set-up for after my takedown as I don't want to go through the burning butt syndrome again.

Good luck in the next weeks. The radiation can kick the cancer's a$$ but it sure does wreak havoc on the body.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

justin case
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Re: Surviving radiation for rectal cancer

Postby justin case » Sun Feb 19, 2012 2:56 pm

Warm baths and vicodin was my relief. Techs also taped my cheeks open during treatment. It was all worth it as 6 weeks out I just had surgery, 0 of 40 nodes positive, tumor completely obliterated by radiation, and no pathological evidence of disease. I started feeling better, in fact almost normal, 5 weeks out. I'm starting to get over surgery already also, staples to be removed Tues. Good luck and hang in there, it's well worth the effort and inconvienience.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

weisssoccermom
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Re: Surviving radiation for rectal cancer

Postby weisssoccermom » Sun Feb 19, 2012 3:03 pm

Many of us have been there and unfortunately, rad oncs are notorious for NOT telling the patients upfront about the side effects and things to do/not to do that could have minimized or avoided many of the problems. I would be very nervous about using too much of the Proctofoam, etc. as those type of products contain cortisone. Remember that radiation thins the tissue and the anal tissue is already thin to begin with - cortisone also thins the skin when used for long periods of time.

It will hurt when it gets to this point. A few other tips to try:

When washing use ONLY gylcerin soap. Regular soaps will also tend to dry the skin - not something you need on top of the dryness that radiation also causes.

Put some crushed ice in a baggie, wrap with a washcloth and put between the tush cheeks for no longer than 15-20 minutes at a time. It can help with swelling and will naturally numb the area (temporarily).

Using something like cocoa butter (pure - no alcohol in it) on the anus itself will help relieve this feeling BUT.....starting now, this late in the game may simply be just too painful.

I seriously doubt that the doc will give you a few weeks off. The whole purpose of radiation is to shrink the tumor and to sterilize the nodal field/pelvic area. Radiation treatments are a 'package deal' that really need to be sytematically one treatment after another and 28 treatments is generally considered desirable (although 25 is considered the minimum). Its not at all uncommon to take a day off at times during the course of the treatment - tomorrow, for example, might be a holiday???? I took a day off to go to a funeral - no big deal. Sometimes a patient is ill, etc. but generally speaking, the docs do not want a patient to take a few weeks (even one week) break in order to feel better. It lessens the outcome of the treatments if too long of a break occurs.

Not sure if you're having diarrhea but are you watching the diet - did they tell you foods to avoid?? Were you told to use products (as long as you washed them off before each treatment) to help stop the skin dryness? Have you been drinking enough?? May I also ask why you're on the 24/7 5FU infusion instead of taking Xeloda pills???

I'm sorry you're enduring this. I only wish you had come earlier so that we could have given you some tips to help avoid/minimize many of the problems that you're going through right now.

Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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sadysue
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Re: Surviving radiation for rectal cancer

Postby sadysue » Sun Feb 19, 2012 6:35 pm

I NEVER used toilet paper until after cleansing myself and my poopy area thoroughly with a squirt bottle. Then I only patted myself dry - never wiped. You can buy squirt bottles on Amazon.com (under cleansing bottles or bidets.) A radiation nurse gave me one at the beginning of treatment and told me to use it all the time, even if only urinating. I followed her advice (plus used Eucerin cream occasionally after bm's) and had no problems. I followed the exact same protocol as you. My rad onc told me I should be a "poster child" for radiation and never saw a butt come thru it as well as I did. Radiation is tough and months later I still have MUCH discomfort but at least I got thru the treatment comfortably. I was lucky and wish the best of luck to you too.
Mary Ann
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

So Cal David
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Joined: Tue May 24, 2011 2:20 pm

Re: Surviving radiation for rectal cancer

Postby So Cal David » Sun Feb 19, 2012 6:47 pm

Radiation came on me very suddenly. I was diagnosed 4th stage advanced and was told I would likely never have radiation or surgery. After 12 courses of Flofox and avastin however I surprised everyone when my extrensive liver (colon) cancer leisions suddenly became treatable. They sent me to UCLA for liver oblation. During the time off from chemo for the oblation my primary tumor blew up and started obstructing. I was put on the fast track for radiation without any preperation. I too am sorry I did not post sooner. Very good advice here.

I am going to go pick up glycerin soap and follow other suggestions of the posters.

I know now others have had dificulty with this. Hot lava is a horrible thought. Perhaps I am lucky to have only razor blades. :)

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Nickmark59
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Re: Surviving radiation for rectal cancer

Postby Nickmark59 » Sun Feb 19, 2012 8:23 pm

I had 36 treatments and was very lucky some how to come thru with limited problems . Had some razor blade moments still get them by weekly when I am in dump mode . Found nice warm shower helped me the most just let it run down between legs after a severe movement .
I have a higher pain tolerance than most people living with chronic, back, knee, joint pain almost my entire life and learning to live without pain medication because it throws my stomach into fits. thru Ti Che etc.
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

momomx3
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Re: Surviving radiation for rectal cancer

Postby momomx3 » Sun Feb 19, 2012 8:35 pm

David -
I'm so sorry that you are going through this! I, too, suffered sever skin burning due to radiation treatment. It was excrutiating; however, I "fortunately" have a colostomy so I didn't experience the "razor blades" or the "hot lava". It was definitely one advantage to the permanent colostomy! I had 3 weeks of 5FU 24/7 with the radiation treatments. Unfortunately, after the 3 weeks combination, my counts were so low that the chemo was stopped so that I could finish the radiation. With only 5 days left of my treatment, my pain and burning was so bad that my radiation oncologist gave me some time "off". He suspended the radiation for Thursday, Friday and Monday in the hopes that my skin would begin healing. He believed that he was not compromising the effects of the radiation by suspended it for those 3 days. It made the final 5 days much more bearable!

My "go tos" for relief were Domeboro on wet washclothes placed on the painful area and Silvadene cream. A warm bath provided some relief also.

It was a very painful experience, but now that I am a year from it, the pain is a distant memory. The skin healed remarkably quickly once the radiation was completed.

Hang in there! :D
Cindy, mom of 3, 49 yo
Dx 7/9/10 RC, stage ??, at age 43
Transanal excision - 8/16/10
APR surgery - 11/10/10, Stage IIIc RC, perm colostomy
4 rounds FOLFOX - 12/3/10
28 rounds Radiation - 2/11
4 rounds FOLFOX - 3/11
CT Scan - 7/12 - NED!!!

NWgirl
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Re: Surviving radiation for rectal cancer

Postby NWgirl » Mon Feb 20, 2012 12:26 am

After 4 1/2 years of dealing with cancer, surgeries, chemo, radiation, my ileo take down from hell - I can assure you, that radiation was THE WORST part of the entire treatment. I tried everything and all I could do was grit my teeth and just get through it. Let your radiation doc know exactly what's going on - there are creams that can help - but for the most part, you just have to get through the hell of it all.

You have my deepest empathy - I know how bad it can be. Just keep reminding yourself that this will drastically reduce your risk of local recurrence. That's what I did.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
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Jachut
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Re: Surviving radiation for rectal cancer

Postby Jachut » Mon Feb 20, 2012 5:57 am

Only a few razorblade moments for me too, I found radiation very easy. What I wasnt told was how difficult a radiation induced menopause can be - its been utterly horrible. I also pee like an old man with a prostate problem now and have had an abnormal pap smear recently. And here I was thinking at the end of the six weeks that I'd gotten off lightly. You can maybe say that after a couple of YEARS.

gracie
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Re: Surviving radiation for rectal cancer

Postby gracie » Mon Feb 20, 2012 9:28 am

I never did get too bad of burns, and Aqua 4 really helped. It seemed my first 2 weeks was making me completely well? Stools were very normal, but I found out this is common for some.

My biggest problem had to do with the 6 8oz glasses I was to drink before radiation. (This was to keep by bladder out of the way. On the x-ray table when I was positioned on a hard support object 'also' pressed directly against the bladder to also help keep it out of the radiation's way.
I did so good for about 3 weeks and then the problems Hit, with explosive vengeance and 'NO' warning.
I had drank my water as usual and by the time I got there my bladder was full as it was suppose to be.
Fatigue was also setting in. I was headed for treatment (30 miles away) About 1/2 way there explosive diarrhea hit me, and of course I also lost all that bladder water.

I came home and called them to explain. (That is when I found out they really like to keep all the treatments.) I did have Lomotil and was told to take 2 or 3 and start with the
water again and come in for treatment in 3 to 4 hours.
The first day worked?
Then right away I could hold no water and the diarrhea was worse even with the Lomotil?

Problems and they said they had to 'Rest me' (I thought this 'rest' would be about a week or 2.) Dehydrated now they hospitalized me, and urine spasm medicine. The rest was two days!
The medicine worked well, except the stool was so hard to control.

I did laugh when in came about 4 volunteers with 6 large glasses of water and all ready to take me to radiation? WOW! Finally a nurse told them the water would need at least an hour to fill my bladder. My fear of having diarrhea on the x-ray table was immense.
They were also adamant about my bladder being full and pushed out of the way.
Four days later it all happened again. I was sick and so fatigued.
I demanded everything 'Stop' "No one can live like this"
OK, they said it was my decision to stop, but don't think you will be all better as the fatigue and other problems would still last 2 to 3 months. "You only have 5 more treatments and we will really try to help you!
These problems of NO control is so humiliating, and the common healthy person never imagine what all happens or can happen to us.
They don't understand the razor blades, other burns, and terrible side effects from these treatments.
I stayed fatigued for about 3 months and the Surgeon would not do the surgery until I was more built up.

I am even a Nurse and took care of Cancer patients (on Hospice) so I did not fathom the side effects they had been through.
Then it is never ending with tests every few months and worries of recurrences.
In the words of all of us 'Cancer Sucks'
gracie
rectal cancer DX Sept 9th of 09 (stage 3)
chemo/rads 6weeks starting Nov 09
Surgery April 13 2010
chemo/ 5FU and Oxi starting 6 sessions (developed blood clots, heart and breathing problems)
suppliments with Naturepath Dr 2010

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CaliforniaBagMan
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Re: Surviving radiation for rectal cancer

Postby CaliforniaBagMan » Mon Feb 20, 2012 10:46 am

Very sorry to hear this. And it is a grim reminder of what I went through, although I described it as "glass" instead of razor blades.

It is very hard to do, but focus on the long term. LIke another previous poster, I experienced the same symptoms as you and am now homing in on the 5-year mark as NED. So you just need to get from here to there.

I found that using occasional suppositories were helpful for the pain. Along with the aquaphor cream/jel. It provided some temporary relief. And in retrospect, I probably should have used more pain medication than I did-- I try to avoid any at all if I can.

I can't offer much more except to wish you the best of luck and outcomes-- you are in a very difficult treatment period right now.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

SugarBubbie
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Re: Surviving radiation for rectal cancer

Postby SugarBubbie » Mon Feb 20, 2012 9:37 pm

Oh how I feel for you. Four years out and I still have pain. I recently found a new cream "Elta" that my rad doc told me to use for my breast cancer burn. I thought "what the heck I'll try it on my butt too". I use disposable glove and put it inside and all around. Really has helped me this time. Elta is supposed to help heal the burn and it seems to be working. I ordered mine thru my pharmacy. I've probably jinxed myself now by telling about it. I got the 14 oz. size not realizing that much will last me years!! They have a website too.

Also no eating nuts (especially peanuts). They go out the way they go in. Think about how that feels...ouch! I also drink kefir for the probiotics to help with diarrhea. I keep my heels propped up on toilet to get the angle better for crap to come out. I know, but it does seem to help. Warm water in bottle like everyone else.

Hope this helps......
DX Stage II anal cancer 2007 age 57
Radiation 6 weeks, Xeloda/oxilaplatin
DX Breast cancer Jun 2011 Stage3 one lymph nodes
Taxol 12 weeks FAC 4 tx, 31 radiations
5 year survivor certificate from MDA 2012 for anal cancer
DX triple neg bc oct 2015 4 rounds adriamyicyn, 20 radiations
"Positivity has no downside"

emazzetti
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Re: Surviving radiation for rectal cancer

Postby emazzetti » Mon Feb 20, 2012 9:59 pm

Are you sure you don't have a fissure? I was experiencing the same thing, thinking I was just experiencing the effects of the radiation. The pain got so bad one day, I called my surgeon, and went in for an office visit. He told me I had a fissure that was causing all the pin. He prescribed a lidocaine/nitroglycerine ointment that saved me!! It worked really well, and I continued to use it through treatment when my butt got sore. It helped relax the sphincter muscle, and I also took a lot of baths.

Hope you find some relief soon!
40 yr fem (dx @ 36)
1.31.11 - colonoscopy
2.2.11 - Dx rectal ca stage 2a
2.28.11 - 5 weeks 5FU chemoradiation
6.3.11 - Robot assist LAR, T3N0M0
7.18.11 - FOLFOX-4 rnds
10.11.11 - 5FU only -> Mar 2012
Still NED!
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