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rugman

I am looking for information from someone who has been in the same situation as me. I am a 49 year old man who was diagnosed last August with a cancerous rectal tumor. I did five weeks of chemoradiation to shrink the tumor. The radiation had a lot of negative side effects and not a lot of change made to the tumor. Some of my symptoms included painful and difficult urination (resulting in having to take Flomax twice a day); erectile dysfunction (which I cannot take anything for due to the reaction those drugs will have with the Flomax) and incontinence problems. The tumor was finally removed last December, with a temporary iliostomy. I began full-blown chemo in January consisting of going in every other monday for a 4-5 hour infusion followed by going home with a chemo infusion bag which would then me disconnected on Wednesday. The side effects of the chemo include "chemo brain", and pain/cold sensitivity to my hands/feet. My oncologist recommends that I continue this chemo treatment for a full six months. However, I just had my iliostomy reversed last week. I am now home and suffering terribly from incontinence. I worry now that this is a permanent condition possibly caused from the radiation. Has anyone out there been in this same situation and do you have any information about whether this is likely to be permanent or if over time, i will be able to regain control and a life of normalcy? Thank you.

PhillieG

Hi Rugman
I have had some similar experiences so I will share those. I imagine others with chime in with what they can offer as far as personal experiences.

First, sorry to hear of your DX. It sounds like you were on FOLFOX chemo, that has the "take-home" chemo and the oxyplatin often causes sensitivity to cold and numbness in the hands and feet. More often than not, the feeling comes back in the hands and feet. Maybe not 100% but I found that most of the numbness went away. It doesn't stop me from playing guitar.

The chemo-brain is normal. I find it comes and goes. It's usually worse right after treatment then gets better as I approach the next treatment. The chemo-brain is normal. I find it comes and goes. It's usually worse right after treatment then gets better as I approach the next treatment. (oppps!, I think I repeated myself!)

I have no experience with an iliostomy at all nor with radiation. From what I've read from others, your situation doesn't sound too uncommon.
-phil

mark440

Hi Rug
I am 48 years old dx on dec. 23 for rectal cancer, I live in the upper penninsula of michigan, the drs. here told me the same as you, radiation to shrink the tumor and chemo before and after, will be on a bag the rest of my life and they wouldnt be able to save my rectum.
I went to the Cleveland clinic and they were fantastic!! they said "no way" to radiation just because of the problems that brings.They had me back in 1 week for "open" surgery on 1-25-10.. they opened me up from just below the sternum to my pelvic bone, moved everything out of the way, removed the tumor and a foot of colon, and by doing open surgery they were able to see 65 lymph nodes and removed them as well. I was stapled up and out of there in 5 days... I get my port in on tuesday and start the folfox treatment,fluorouracil-leucovorin-oxaliplatin.... Im very worried about the oxi- ive been reading alot about it from the wonderful people on this site. this is a great place to have all your questions answered..
Good luck and welcome..

Kerry S

it does get better
Rugman,

First, it does get better. It just takes time to rebuild the body. I had the chemo/rad 6/08. I feel I am 98% back. The 2% is my short term and visual memory.

You have been through hell and are now on your way back. Push yourself and exercise. Drinking Gatorade seemed to help me a bunch with the fried nerve problem.

Develop a strong attitude of I will beat this crap.

There some good parts in all this. You can blame chemo brain for all your screw ups. If you don’t want to go some place, just tell your wife you feel like you might crap in your pants. After I crapped in my pants cutting firewood, I found that one works great. I might have to do that again to keep the scam going.

msccolon

Kerry S said:

it does get better
Rugman,

First, it does get better. It just takes time to rebuild the body. I had the chemo/rad 6/08. I feel I am 98% back. The 2% is my short term and visual memory.

You have been through hell and are now on your way back. Push yourself and exercise. Drinking Gatorade seemed to help me a bunch with the fried nerve problem.

Develop a strong attitude of I will beat this crap.

There some good parts in all this. You can blame chemo brain for all your screw ups. If you don’t want to go some place, just tell your wife you feel like you might crap in your pants. After I crapped in my pants cutting firewood, I found that one works great. I might have to do that again to keep the scam going.

hahahaha!
If we can't use cancer as an excuse to get out of stuff, what good is it?! I have used it as an excuse and always plan to use it if stopped for speeding while traveling (I'm sorry, officer, I'm on chemo and it gives me the runs and I REALLY need to get to a restroom like yesterday!)
mary

Crow71

Hey Rugman. Welcome to the
Hey Rugman. Welcome to the board. I was diagnosed about the same time you were. I did radiation set up, but at the last minute we changed the plan and skipped radiation. I do remember the cute resident telling me that I would suffer from incontinence, but that it would eventually go away. I said,"So I'll chit my pants all the time, but only for a little while. Super." Hang in there. You'll regain control. Will we go back to being normal?I don't even know what normal is. As someone posted to me when I joined,
"Welcome to the new normal."Can we beat this? He11 yes. Will we go back to living our lives as we did BC? Probably not. Can we laugh along the way? We'd better. Kerry's story about crapping his pants while cutting wood made me laugh so hard I crapped my bag, and I could feel my tumors shrinking. Take care Rugman.
Roger

geotina

Hello
Just got back in town and wanted to jump in and say welcome to the board. I have no clue on how to address your post, in our house we are dealing with colon cancer in the transverse colon and it is treated a little different than rectal. George had the surgery to remove the primary tumor in the colon and then 4 weeks later on to chemo to address the mets to the liver and lungs. So far so good on our end. George's chemo was the same as yours. Hang in there - Tina and George

coloCan

geotina said:

Hello
Just got back in town and wanted to jump in and say welcome to the board. I have no clue on how to address your post, in our house we are dealing with colon cancer in the transverse colon and it is treated a little different than rectal. George had the surgery to remove the primary tumor in the colon and then 4 weeks later on to chemo to address the mets to the liver and lungs. So far so good on our end. George's chemo was the same as yours. Hang in there - Tina and George

I don't recall having problem with incontinence till after
I had colostomy. Radiation and chemo prior to op did not cause that for me. Chemo after op has made it worse tho it had been improving until chemo started again. Recently, it has not been every night tho I now wear a Depends and use old towel(s)between me and bed/blanket in case of leakage, which is frequent,esp after a chemo session. Onc aware and when chemo ends she'll send me to urologist she used for another patient with similar problem.(Don't like dealing with other doctors while doing chemo unless have to).Might want to discuss your problem further with one of your doctors; my onc and radiologist are both women younger than me and I couldn't care less--they're both lifesavers.....Best of results.....steve

Marauders99

coloCan said:

I don't recall having problem with incontinence till after
I had colostomy. Radiation and chemo prior to op did not cause that for me. Chemo after op has made it worse tho it had been improving until chemo started again. Recently, it has not been every night tho I now wear a Depends and use old towel(s)between me and bed/blanket in case of leakage, which is frequent,esp after a chemo session. Onc aware and when chemo ends she'll send me to urologist she used for another patient with similar problem.(Don't like dealing with other doctors while doing chemo unless have to).Might want to discuss your problem further with one of your doctors; my onc and radiologist are both women younger than me and I couldn't care less--they're both lifesavers.....Best of results.....steve

Hey Rugman,
Welcome. I am
Hey Rugman,
Welcome. I am relatively new too. The folks here are great. You'll get addicted.

So, I'm a 45 year old male Dx October 2008. I had my primary tumor removed from my rectum during July 2009 and had a temporary illeostomy for 3 months through October 2009 when I had the reversal done. In my case is has been a steady improvement with the incontinence thing. My surgeon actually suggested I do Kegel excerises (I remember my ex-wife had to do them after childbirth...) during the 3 months I had the illeostomy to strengthen the muscles in that area. I did it and am still doing it, though not religiously. Did it help? I don't know but I do know that I seem to have more control and more normalcy as time goes by. I do still have to be careful about going out of the house soon after a meal. The Doc also told me that since I had part of my rectum removed I will always have the feeling of needing to go more frequently since I have less storage there now.

Scott

z

Radiation Side Effects
Rugman,

I am a 51 year old female, I had 30 radiation zaps along with chemo for anal cancer Stage II NOMO. After completing treatment I initially had urgency and incontinence problems for about 2 months. Gradually it got better. It takes time to have our canal stretch back out as its been burned and shrunk. 8 months out of treatment and I'm basically back to normal. I only had chemo for 2 cycles, so I experienced mimimal chemo brain. I wish you well. Lori

robinvan

Hey Rugman
Sorry to hear about your diagnosis.

I'm a stge 4 survivor. My tumour was in the sigmoid so was treated via resection, no colostomy, so can't help you there.

The 5FU/Oxi mix is fairly standard (FOLFOX). Most of us here have had that or something similar. Most side-effects of chemo should go away afterwards.

Rob; in Vancouver

RickMurtagh

welcome Rugman!
Hey Rugman. Our cancer stories are very similar. We are about the same age (I turned 50 Feb 2) and had the same treatment. My first round of chemo/radiation was very effective though and did not effect urination at all, but I have all the other symptoms. I completed my second round of chemo treatment (FOLFOX). Hopefully I am scheduling my reversal on Tuesday, but from what I have learned, post reversal can cover the full range of experience, being perfect for some and poopy hell for others.

Incontinence, erectile dysfunction, urinary difficulties, neuropathy and chemo brain all add to the hell that can become our lives. Not all of those symptoms are necessarily permanent though. Hang in there and don't give up hope.

This forum does not have a separate takedown/reversal section, but there are those here who can help. A site that has a separate takedown/reversal forum and has helped me deal with those fears has been http://www.uoaa.org/forum/viewforum.php?f=25.

Good luck on your quest for normalcy!

Live long and prosper!