First time user

Just want to welcome you to the group.  We will be here to help you out through this process.  I'm not able to answer your question now, but I'm sure that many will help.  Wishing you the best in treatment ahead.

Kim

Welcome Barry! There're many awesome people here that will answer your questions and support you while you go through your treatments. We're all here for one another. It's like an extended family here.

Sorry you're here but welcome! I had both Folfox and 5FU. The Folfox is the one that should have FU as part of it's name because it's such a bugger. It varies for everyone, like most things cancer related, so you can have side effects to varying degrees or not have something at all or have it take longer to start or longer to go away.

I didn't have fatigue nearly as bad as I did with the 5FU but I did have the neuropathy. I was slated to have 12 doses as well but only had ten due to other reasons. You've probably started to have the neuropathy by now, mine kicked in at about the 4th session. I don't know of anything you can do to avoid it. Gloves if you touch anything even cool to the touch. No drinking anything even cool, let along cold. I tried drinking a cold drink while getting the chemo because I'd heard that it stops the effect. It didn't work. I've also heard to wear something cold on your head. Didn't try that one and my guess is it doesn't work, either. And, really, how do you wear something cold on your head for a couple of hours?

I don't know how quickly the neuropathy went away after I stopped having it but it was going away before the next dose so I assume it went away that fast. Except for in my feet which I still have two years later. But it's down to wear I usually don't notice. Just a tingly sensation like my feet almost fell asleep and just around the instep area.

I hope it will be better for you. Some people don't have it very badly. Good luck!

Jan 

SophDan2 said:

Good luck with your treatments Mike.

Do you live in NH Mike? I am in MA, treatment is at Mass General Hospital.

Good luck with your treatments also Mike!

Barry

Yup, NH. You're in good hands at MGH.

SophDan2 said:

Thx Jan

It is the sensitivity to cold, which started after 1 hour on the very first treatment, and for all of the other treatments that followed, that really bothers me.

Theone common thing tha I am hearing from all, is the neuropathy part of the side effects. I will be keeping a very close eye on that side effect. The oncologist would like me to complete the 12 treatment schedule, however, my gooal is to at least get through 6 and then assess the side effects after each treatment. If needed, to prevent life-long side effects, I would seriously consider stopping the treatments.

Thanks again to all to have replied to me.

Barry

To the best of my understanding the treatment protocol is currently shifting from 12 to 6 treatments, so you might want to ask you oncologist about this and do a little research on your own.

Trubrit said:

I'm not Barry, but...

I'll tell you what I experienced. 

The sensitivity to cold came in a few different forms. 1st, anything cold in the mouth causes a tightening of the throat.  

Anything you touch that is cold, causes a electric shock feeling.  Its best to wear gloves when getting anything out of the fridge. Oh, how many tubs of yogurt hit the kitchen floor, when I was going through treatment. (I'm a slow learner)

And core cold. For me, this was mostly during radiation. I could not maintain my core heat. It was July in Reno, Nevada. 106˚ F one day, and I was sat under a heated blanket with another blanket on top to capture the heat. I was cold from the inside out. 

Of course, everyone experiences things in a different way, so you may have all, none or just a few of these side effects. 

Tru

I never felt cold in my body, Tru, that sounds nasty. But I certainly got the cold reaction. It's so hard to describe. Yes, like an electric shock but if you continue to hold or touch the cold item it keeps going. It's like getting a big shock after you've walked across a carpet and it's instantaneous. And very strong. I've touched an electric fence and had a similar shock. Often you don't know if someting is cold. Like when you brush your teeth and you have to have warm water to rinse your mouth out but you don't know if it's warm enough yet so you put your finger in to check and it gives you a jolt. I found it very stressful. I was constantly complaining when it happened. "are you kidding me??" "WTF, seriously??" that type of thing. You walk around your house scared to touch anything. 

I got those cheap little knitted gloves to do things like peel vegetables but that leaves little bits of fluff stuck to them. And then you might get a shock when you rinse them off. But the worst was the reaction when drinking something even cool. I'm not a coffee drinker, it bothers my stmach, and I got SO sick of hot chocolate or tea or the few hot things there are to drink. The reaction to drinking something cold is not really something I can describe. Many say it's like swallowing shards of glass. It is but without the pain. Just a nasty feeling. Or swallowing gravel. Very hard to describe but it's ugly.

It would go away before the next two week session but it was lasting longer and longer and getting to the point where I only had two days of it going away. And it would show up before I got to the parking lot afterwards. One time I couldn't find my stupid parking stub to get out of the parking lot and had to get out and look on the ground and I was crying because it was cold and my face was buzzing. Oh yeah, I had it on my face and in my feet, too. Finally, I just booted out of the parking lot behind someone else.

Hope this helps! Sorry to not be able to say it's not so bad. It is. And it seems to be a major go to chemo for colon cancer.

Jan 

JanJan63 said:

I never felt cold in my body,

I never felt cold in my body, Tru, that sounds nasty. But I certainly got the cold reaction. It's so hard to describe. Yes, like an electric shock but if you continue to hold or touch the cold item it keeps going. It's like getting a big shock after you've walked across a carpet and it's instantaneous. And very strong. I've touched an electric fence and had a similar shock. Often you don't know if someting is cold. Like when you brush your teeth and you have to have warm water to rinse your mouth out but you don't know if it's warm enough yet so you put your finger in to check and it gives you a jolt. I found it very stressful. I was constantly complaining when it happened. "are you kidding me??" "WTF, seriously??" that type of thing. You walk around your house scared to touch anything. 

I got those cheap little knitted gloves to do things like peel vegetables but that leaves little bits of fluff stuck to them. And then you might get a shock when you rinse them off. But the worst was the reaction when drinking something even cool. I'm not a coffee drinker, it bothers my stmach, and I got SO sick of hot chocolate or tea or the few hot things there are to drink. The reaction to drinking something cold is not really something I can describe. Many say it's like swallowing shards of glass. It is but without the pain. Just a nasty feeling. Or swallowing gravel. Very hard to describe but it's ugly.

It would go away before the next two week session but it was lasting longer and longer and getting to the point where I only had two days of it going away. And it would show up before I got to the parking lot afterwards. One time I couldn't find my stupid parking stub to get out of the parking lot and had to get out and look on the ground and I was crying because it was cold and my face was buzzing. Oh yeah, I had it on my face and in my feet, too. Finally, I just booted out of the parking lot behind someone else.

Hope this helps! Sorry to not be able to say it's not so bad. It is. And it seems to be a major go to chemo for colon cancer.

Jan 

That sounds like quite the pain. I'll have to watch for it. I have thin running gloves which might come in handy when I go on Xelox. Thanks for your replies.