Newly Diagnosed Rectal Cancer - starting radiation/chemo soon

[LaciK]

I went in for a "routine" colonoscopy on 9/23/15 and was surprised to hear that they discovered a 2 inch mass! I had a follow up CT which showed 2 swollen lymph nodes, but no other spread. My blood work was all normal (including my CEA) and a follow up EUS was consistent with the CT findings T3N1 - stage 3b. I hope I am explaining this correctly. This is all very new to me.

I met with my oncologist last week and he recommended 6 weeks of radiation and oral Xeloda (two 500mg pills twice daily). I meet with the radiation oncologist this Wednesday (10/14) and most likely will start treatment next week.

I am very interested in how people proactively managed their symptoms from radiation and Xeloda. I want to be as functional as possible during this time, so I am open to hearing what other people found effective. I am a CPA and working from home is a possibility, so I am hopeful I will be able to be somewhat productive.

If someone could post here, or point me to the discussions which would be most relevant, I would greatly appreciate it.

[Lydia666]

I just went thru this and i am a CPA too . I was totally functional through the entire time. I took more xeloda than you( 3000 mgs per day). Besides diarrhea , but not too bad , and very dry hands from xeloda, all was well.
I am glad you caught this fairly early.

[cathy123]

So sorry you find yourself here. Everyone is different but I got thru radiation pretty well. Have immodium on hand, although I didn't really need that many times (most do). Use some sort of lotion on the radiated area - apply liberally after radiation, but make sure the area is clean and dry before radiation. I wasn't sure where to put it exactly, so I will be a little crass - all the way up the butt crack is where I had issues. The last week or so I was also using diaper cream products as I got pretty sore. I was told to eat a low fiber diet and I think that helped me to avoid bad diarrhea.

The radiation appt itself only takes 15 minutes or so. I work part time from home and have school aged kids and was able to pretty much keep up my normal routine during radiation - I just went to bed a little earlier (and maybe let the housework slide a bit). But you will just have to see how it affects you. This forum has been so helpful for me - feel free to post back anytime with questions!

[Jacques]

RADIATION THERAPY FOR CANCERS OF THE COLON, RECTUM AND ANUS
http://www.rtanswers.org/uploadedFiles/Treatment_Information/Brochures/colorectal.pdf

(...) If someone could post here, or point me to the discussions which would be most relevant, I would greatly appreciate it.

Radiation pain discussions on ColonTalk:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=49914

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48936

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46560

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=38627

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=33944

[cashmere]

I was a CPA until June of this year. I work from home and I was able to get through most of tax season doing my 6 months of mop up chemo which was pretty grueling. My was diagnosed in April 2007, so I had plenty of time to get through chemo/radiation and surgery before the mop up chemo. Good luck with everything.

[JudeD59]

It's impossible to predict what side effects you will have or how severe, unfortunately. I was prepared for diarrhea and radiation burns, but thought I would be able to function pretty well throughout most of the treatment. Instead, I had severe constipation, no burns at all, and ran a pretty good fever throughout most of it, which made normal life pretty much out of the question. I had a different experience than most members describe (which you can read if you click on my name and search my posts). I spent a lot of time trying to deal with the constipation and spent many hours on the toilet.

The fatigue is very real and for me, it hit the hardest right after a radiation treatment. I would pass out for several hours after I got home. By pass out, I mean fall into a very, very deep sleep. I'm usually a light sleeper, but my family would come in and check on me and I heard nothing. The constipation eventually got better as the tumor shrunk from the treatment. I had no appetite and some nausea and I lost about 25 pounds between diagnosis and the end of radiation. I've lost about 15 more since then. They are pounds I needed to lose, but not this way.

I would be prepared with creams for sore butt and burns, buy a squatty potty because even if you don't need it now, you'll find it handy later on, and just be ready to take things as they come because the experience is a little different for everyone.

Best of luck and let us know if you have any more questions as your treatment gets underway.

Judy

[shade]

Sorry you ended up in this forum but it sounds like you are taking a positive approach to your upcoming treatment. I had a similar course of chemoradiation. Not really bad for me, and I was quite productive throughout. The daily visits for 5 weeks was the biggest issue. I was able to work from home, which made things much easier. Best of luck.

[Mastan]

Welcome to the WTF club. I did nor fair as well as the other responders to your post. The radiation caused me to develop uncontrolled diarrhea to where I had to wear adult diapers. That was a hell of a lot of fun. Then because of the extreme diarrhea and chemo combination I developed a blot clot in my leg. So I had to give myself heparin injections every day. In fact 5 yrs later I am still giving myself injections because chemo caused me to develop a pulmonary embolism this year. In spite of all of that crap I still went to work more or less full time. Fortunately I have an office job. One thing that cancer will do is greatly increase your medical knowledge because cancer treatment can cause many different adverse medical conditions. If you are lucky you may not experience many but if you stay in treatment long enough you may run into some of the myriad of medical issues.

Mark

[RickWhosoever]

Laci,
Like others have said everyone is different. I went through the same protocol before my surgery. I was in good health before my diagnosis in Jan of this year and was able to stay very active. I played basketball for an hour once a week and worked out with my boxing trainer as well. My weight fluctated plus or minus 3 pounds from my starting weight during the entire process which confused the nutritionist at the radiation oncologist's office. I found eating a small snack (peanut butter crackers or cheese & crackers were my defaults) about 30 minutes before treatment made it more manageable. Best of luck to you in your treatment and I'll be praying for you.
Rick

[Jachut]

I was functional right through and in fact after about three weeks felt a great sense of wellbeing creep up on me, I hadn't realised that I had been below par for a year or two. I lost about 30lb right after radiation and before surgery (in a six week period) for no apparent reason - eating well, not having any side effects, diarrhoea, nothing. Had all my docs extremely worried as I wasn't overweight to begin with so boy was I skinny.

I was OK during chemo as well although it got harder. But by far my greatest challenge has been in the years since - fatigue, depression and general poor health due to appetite changes and terrible diet. And I've had problems with mucked up gut flora and some liver issues (high ALT/AST) since chemo also. I also had radiation damage set in and had to go back in for a colostomy due to basically a frozen pelvis.

For what its worth though, my highly qualified and prominent Melbourne surgeon has never before seen the radiation issues that I developed and neither had his other well respected colleagues to whom he sent me for second and third opinions. So you can probably strike that worry off your list. Best of luck, it will all be behind you one day.

[kellywin]

Laci - as Mark (Mastan) said, welcome to the WTF club! So sorry you have to be here. I echo what others have said, everyone reacts differently, but don't be scared that all these horrid side effects will effect you - they may not. I worked throughout radiation/xeloda, I'm an Executive at a small bank - no one knew I was in treatment except my boss. For me, radiation was manageable. There's a razor blade phase and I won't lie, it sucks, don't be afraid to ask for pain meds (Norco). I also worked when on Xelox (Xeloda + Oxaliplatin in the vein). I did think this part really sucked and did have to take some time off between infusions, but some people don't. Here are my thoughts:

Lotion - put it everywhere, in the crack and on the anus, no joke, after every radiation session (I did it in the dressing room), I used Cetaphil
Gentile soap - the nut jobs at my radiation place said don't use any soap in the area, what a joke, yeah, no soap down there for 5.5 weeks?? No way. Cetaphil makes a gentile bar soap
Calmoseptine - when you start feeling like you're shitting razor blades, get yourself some rubber gloves and about 5 tubes of calmoseptine
Norco - don't be afraid of needing it
Xanax - it can be a lifesaver
Vagina - I'm thinking by your name your a woman and this part is no joke, find yourself the best damn gynocologist who knows about radiation, get yourself some dialators and premarin cream - this part of the gift of radiation will keep on giving. I just started on vagafem pills to
Menopause - radiation will put you into it if you're not already there, so be prepared (also see above)
Physical therapy - start on it as soon as you start radiation, stretching and excercises for your gluts, I didn't know this and mine are like leather, my PT said they fee like some who was poisoned with arsenic. I should have started earlier on this.

Some of this is probably repeat of what others said.

Thinking positive thoughts for you. This is such a rough time.

[KWT]

Before I went through a month of radiation treatments, I would seriously look into the five day short course.(European protocol) my Stanford doc's recommended this so that's what I did. No side effects and only lost 1 week.

Oh, and no chemo involved during that.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228203/