The Colon Club

Hi. My name is Eric and it's been 4 weeks since my last chemo infusion.

I'm not sure if I'm still getting side effects from the Xelox or what.

1.) I get chilled really easily and have trouble warming up;
2.) I have slight numbness at both ends of my GI tract (lips & anus);
3.) Always wake up with a dry mouth;

Nothing too serious--just annoying.

Hi Eric,

I don't have the same symptoms as you but I do have some numbness in my feet. Very slight and not a problem but I have heard that the side effects can linger and possibly even get more pronounced a few months after chemo.

Eric, increasingly noticeable symptoms are pretty common for the first few months after both oxaliplatin and radiation.

I was thinking about this a bit today, going over study reports. There are trends in increased reporting of neuropathy and reporting of lingering neuropathy in patients for as far out as 9-12 months after dosing - but the higher incidence of lingering neuropathy is among people who had BOTH oxaliplatin and radiation.

I had neuropathy during and after folfox, which dissipated within 6 months of the end of that protocol, and the only thing I had left was enhanced sensitivity to cold.
However, prior to intraoperative rad, which followed my 25 days of external rad, the rad oncologist warned me that I would probably experience numbness and tingling in one or both of my feet that would show up and get worse around 6 months post-op. That makes sense, since radiation half-life is part of the reason that it's effective.

Right on schedule, I developed left foot neuropathy and left leg weakness. The foot tingling is every bit as intense as when I was on oxaliplatin - which I've been off since Dec. 2004. So it ain't the oxaliplatin causing this...it's the radiation.

I wonder how many other people who've had both radiation and oxaliplatin still have lingering neuropathy - and are blaming it in on the oxi and not considering that the radiation can cause this, too.

I get 7 of 12 treatments of folfox on monday. I have been pretty lucky so far but have
noticed dry mouth, some neuropothy (?) in my hands, feet, lips, and when I was outside
for a short period of time my cheeks got numb. My hands are freezing most of the time.
I wear gloves alot, especially during and about 6 days after. I did have radiation back in
Feb/Mar 09 along with chemo. Not much happened other than my hips get
really sore.

BrownBagger wrote:Hi. My name is Eric and it's been 4 weeks since my last chemo infusion.

- greeted with a chorus of "Hi Eric !" (subtle reference NOT missed my friend !!!)

BrownBagger wrote:I'm not sure if I'm still getting side effects from the Xelox or what.

1.) I get chilled really easily and have trouble warming up;still get that even now 2 years out
2.) I have slight numbness at both ends of my GI tract (lips & anus); have not had this AND I am not going to go to the obvious cheap joke either !!!
3.) Always wake up with a dry mouth;definite side effect of the Xeloda part BUT can also dry up stuffy sinuses for those so affected - me.

Nothing too serious--just annoying.

Cheers and keep on Keepin' ON.
Be well
CRguy

I love it when people get my jokes. Thanks, CRguy!

Hey..thanks Eric & CRguy ~ I needed that laugh! Eric, I knew you were kooky when I finally figured out what you were throwing in the waste can. (The one in your posted photo). Keep it up! And by the way ~ I had to respond to your comment regarding some of your side effects. I finished my first phase of chemo in Feb/March of 2009 (Xeloda & Radiation) I had stayed with my sister because she lived close to the center I would be driving to everyday. She thought I was nuts because I was always "freezing". I wore my coat and scarf and gloves in the house. Towards the third week I developed the HAND/FOOT Syndrome and had acquired some weird rash on my chest. It almost looked like my skin was becoming transparent. My ONC was out of town and the other's all looked at me with a blank stare: "We've never seen anything like that before"!!...Oh,well, that's lovely!! They took me off Xeloda for the rest of the week and then lowered my dosage substantially. The only symptoms that lingered were the sensitivity to cold and a slight numbing in my lower lip. (Another side effect they "never heard of".)

I had the LAR surgery (with resulting ileostomy ) in May and then another 4 -5 months of the oxali/leuc/5fu cocktail. As many others did ~ I had the mouth sores (believe me...my saviour was the baking soda/salt rinse at least 5 times a day). I had the glass shards feeling in my throat if I forgot to drink something room temp. I did not get the hand/foot thingy with the second phase of chemo... but the partial numbness I had experienced during my 1st phase of chemo had resulted in my whole mouth being completely numb throughout the second phase. I had a reaction after my second trtmnt of oxi ...I was using my mouth rinse and my whole tongue went numb. I freaked on that one. Thought I was going to be paralyzed. Even called the hospital. (Doc's office just closed) After 20 minutes it went away. On several occasions I got the jaw pain ..that was real sweet!! (upon biting onto pretty much anything...even a piece of gum) and for the longest time I got where my hands would lock up like "claws". They finally took me off the oxaliplatin part of the chemo for a few trtmnts and the majority of the side effects have lessened to a comfortable degree. I finished chemo in Oct., and the numbness (in my lips/mouth) is still there..but not as intense. As for being cold...I'm sitting here right now with the heat up past 75 and the fireplace has been going all day. Every day. (getting expensive!! The insurance doesn't cover that!!)
Thanks for letting me vent!! (and also for the humor) K~

I am not receiving chemo as planned for Monday Jan. 4th. I have fluid in lower ab area that showed up as bacteria, can't do chemo till it is gone. My surgeon and I decided to take my colostemy down and remove fluid. I will join your club on Jan. 11th and I am counting the days till I can toss my bags too. I saw your pic and felt a connection.

BrownBagger wrote:I love it when people get my jokes. Thanks, CRguy!

WELL !!! it IS a tough job but .....somebody's gotta do it !!!!

sometimes things sneek through but one of the best things about this board is, over the years, I have had the honour of meeting up with some really incredible folks, just DOIN' their thing !!!!

maybe humour, maybe knowledge, maybe humility, maybe angst...ALWAYS REAL, COLORECTAL FRICKING REAL !

I like finding the humour, irony, "life's joke on me" sarcastic / sardonic HUMOUR !..in everything.

Keeps ME real.

Love your posts and your energy...keep trying to sneek one past me...dare you !! If i miss it..well I'll be back atcha the next day.

Be well on your journey
Many CHEERS !!!

CRguy

(( ALSO : check out the Xeloda Hand Foot thread of yours and see how a manly man handles that problem !!! ))

I forgot to add I do get jaw pain but it is usually during the 3 day infusion. I have had the flu
twice in 3 mo. which I can't remember the last time before that. In bed over my birthday
on the 30th and New Year's Eve. I think I try to block out/forget anything that is not happening
at the moment. Like you Brownbagger, so far it has just been annoying. When I see some
of other people's side effects and situations I tell myself I am fortunate, it could be alot worse.
I have a friend with brain cancer the docs sent home with hospice 3 wks. ago and gave her 48hrs. to live and
she is still hanging in there. She has been fighting for over 2yrs. Only 450 cases of her kind in
the US.

airic wrote:I am not receiving chemo as planned for Monday Jan. 4th. I have fluid in lower ab area that showed up as bacteria, can't do chemo till it is gone. My surgeon and I decided to take my colostemy down and remove fluid. I will join your club on Jan. 11th and I am counting the days till I can toss my bags too. I saw your pic and felt a connection.

Welcome. Don't forget sleeping on your stomach again. For me, that was a real benefit to getting reversed, among others.