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SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

Hi,

I am Barry; I was diagnosed with Stage 3C colon cancer back in April of this year. I had surgery to remove the cancerous portion of the colon (in May), along wih 25 lymph nodes (6 had cancer). It was recommended that I have Folfox chemo treatments (12, every 2 weeks, 48 hours each treatment). I have completed 4 treatments up to this point, so I have learned to deal with the side affects up to this point.

I was hoping that by joining this site, with it's chat rooms, I would be able to hear from others that have gone down the same road. Anyone care to share how this type of treatment went for you for treatment 5 through 12?

Thanks all!

Barry

Trubrit's picture
Trubrit
Posts: 5382
Joined: Jan 2013

It is good to have you join us, Barry. 

Of course, we are sorry you have been diagnosed, but its your life now, and we are here to help you through the rough parts (and beyond, if you so wish). 

I had nine FOLFOX treatment with the 5FU pump for 48 hours. I followed that up with six weeks of Hellish radiation and the pump 24/7. 

I don't know why, but I was really hit hard during chemo, and harder during radiation. I was a mess! I had about every side effect in the book, and a few more. It was not a pleasant journey, BUT, here I am, four years out of threatment; three years since my liver met made an appearance and god fried, and I feel GREAT.  My scans & blood work are next week, so we'll see if I'm doing as great as I feel. 

Certainly the side effects can cumulate as you go forward with your treatments. Keep and eye on them, especially your hands and feet, for the neuropathy. I didn't question mine at the time, and they got bad - real bad - and they have never fully recovered. So, if you feel like you are getting neuropathy, be sure and mention it to your Onc. He will lower the does, or quit the treatments early, if need be. 

My hair did fall out until I looked like Gollum. You're a guy, so I don't think its quite as traumatic, right????

I wish you all the best as you go for treatment five and beyond. I promise you, there is light at the end of the tunnel. The jorney seems long while you are riding it, but looking back is glourious. 

Tru

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

I appreciate the feedback! Radiation was not recommended for my situation, which I was happy about. I am glad that you mentioned the neuropathy, I have read up on the side affects and I have made sure that all in involved in my treatment know that I do not want to get to the point of no return with the neuropathy. So far, I have experienced the neuropthy within the 1st hour of treatment, which lasts about 7 days from treatment day. So basically, I have 1 week of dealing with side affects and 1 week of feeling pretty good.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

       I was dxed with stage 3 c colon cancer into six of 13 lymph nodes. I had a very old regime of 5fu //levamisole, 48 weekly sessions. It is no longer used as levamisole was banned in 2001 for often fatal side effects.  I was dxed at the age of 48 in Jan 1998. Next jan will be the end of year twenty still cancer free. I have a lot of long term side effects from the cancer and chemo but I guess there is always some price to pay. I have always stayed vigilant ant my last scope in april this year they removed 4 polyps , the largest 11 mmm that had grown in only three years. Wishing you the best of luckand clear scans, Ron.

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

Thank you for you feedback Ron, 20 years later and still clean, that gives me hope, as I too plan on being here in 20 years. I know that they will be watching me like a hawk from this point on, and I feel very comfortable with my medical team. 

Annabelle41415's picture
Annabelle41415
Posts: 6687
Joined: Feb 2009

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

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

I can already see the community of people willing to help.

NHMike
Posts: 214
Joined: Jul 2017

You're ahead of me so I'm watching your results and this thread to learn from the experiences of others. Good luck in your treatment program.

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

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

Good luck with your treatments also Mike!

Barry

NHMike
Posts: 214
Joined: Jul 2017

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

Lily Flower's picture
Lily Flower
Posts: 253
Joined: Jul 2017

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. :)

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

I feel the extended family developing!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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's picture
SophDan2
Posts: 151
Joined: Jul 2017

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

NHMike
Posts: 214
Joined: Jul 2017

Hello Barry,

I've heard many comment on sensitivity to cold. Could you describe how that manifests itself? Do you feel chilled all the time or do lower temperatures make you feel funny?

 

thanks,

mike

Trubrit's picture
Trubrit
Posts: 5382
Joined: Jan 2013

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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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 

NHMike
Posts: 214
Joined: Jul 2017

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.

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

Hi ike,

 

It starts within the first hour of my treatment, for the 4 treatments that I have had. When I touch something cold, such as anything in the refridgerator or freezer, it feels like an electric shock. Over the days following thr treatment days it does lessen in it's severity, but is appears that with each treatment it last longer. It is not a pleasant feeling and a constant reminder that you are on chemo. I also ride a motorcycle; the other night I went for a ride and by the time I got to my destination my hands were in serioud pain from the cool air (64 degrees).

Again, ot a pleasant feeling!

SandiaBuddy's picture
SandiaBuddy
Posts: 1163
Joined: Apr 2017

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.

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

I did ask about the 3 month treatment, however my cancer is a rare form of colon cancer with MSI High diagnosis. For that reason, they have asked me to shoot for the6 month protocol. If I cannot toloerate the 6 months, I will stop the treatment at any time after the 3 month mark. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Like SB said, I read that Europe is doing only 6 treatments as their protocal rather then twelve. My cancer came back and I'd done ten but I don't think that's an indicator of how effective or not effective it was. It didn't some back for over a year.

You got it the very first treatment after one hour?? Ugh! I had intended to tell the onc that I wasn't going to continue when the issue that stopped me from continuing happened anyway. I was getting the treatments in the winter and we live in Canada so you can imagine how bad having the neuropathy was. In the winter even when your house is warm your handles of your doors are cooler. Things like faucets, anything you touch is cooler. I was so stressed by getting the shocks from it I just couldn't continue. Plus, that the time, I wasn't sure that chemo was such a big help anyway.

Jan 

beaumontdave's picture
beaumontdave
Posts: 1109
Joined: Aug 2013

Barry Welcome! Sounds like your well informed about a lot of things, so I'll just share my experience with Folfox[including 5fu]. I couldn'd drink anything cold, felt it first at my epiglotis[the punching bag in your throat]. Contacting cold water was like being shocked electrically on my hands or feet. I fatiqued quicker, especially in hot weather. I did all twelve treatments and felt the effects of neuropathy lingering for about a year and a half. I worked all through treatment, even with the pump on my hip running to the port on my chest. I went a little slower and took more breaks, but I got through it. I share my experience as one end of the spectrum of possible reactions to chemo, I know many had a very rough time with it, and some suffer permanent damage, so your cautious approach to how many rounds you do, is smart. The effects on me started after the first treatment and stayed constant until well after the last. The other thing that happened and I really didn't connect the two things at the time, was an increase in the "floaters" in my eyes. That about covers my experience, I hope yours is even better/easier..................................................Dave

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

I have experienced the floaters with my eyes too, but not too much at this point. I will be sitting, and I think I see something move like a bug or a mouse, but I now realize that it was my eyes being effected by the chemo.

PamRav's picture
PamRav
Posts: 290
Joined: Jan 2017

just wanted to welcome you here.  Sounds like you've got everything pretty well under control.  I only had 3 treatments with the "oxi" so having experienced too much residual neuropathy. Only a little tingling in my toes now and then. 

wishing you all the best with you treatment. 

 

Pam 

plsletitrain
Posts: 253
Joined: Jul 2017

Hello Barry. Welcome to the club.  I was diagnosed stage 3B around the same time as you.  I have 6 more chemo sessions to go.  It has always been a rollercoaster ride and I've learned to accept and live it.  So far I've had it good with the 5FU with Oxy.  But the Oxy with xeloda (oral chemo) weakened me the last time.  I'm more prepared not to give in to the weakness this thursday (I'll have the infusion) so I hope I'll manage it.  Good luck to us!

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

Yes, good luck to us all!

MommaAos
Posts: 3
Joined: Aug 2017

My daughter has stage 3a colon cancer.  She just finished her 2nd infusion and has lots of hand pain. Im so fearful of the future side effects. How are you doing ? I need encouragement 

SophDan2's picture
SophDan2
Posts: 151
Joined: Jul 2017

Hi Momma,

 

The side affects were pretty much the same for the 1st 4 treatments; sensitivity to cold, nausea, tiredness, food not tasting good and so on. Most of the affects lasted the first 7 to 8 days after the treatment date. After yesterday's treatment will will continue until tomorrow via pump, I felt the neuropathy set in right away (sounds like that what your daughter experienced). Today those feelings have lessened, however, the sensitivity to cold still remains, which is really the constant reminder to the chemo. Let your daughter know that the time does move along qicker than you think, and a positive attitude to what she is fighting is so so important.

I am a camper; to use an analogy, it is like while on treatment you are sitting in front of the campfire, but you know that in the woods behind you there is a black bear waiting for te fire to go out. The campfire is that positive attitude, don'tlet the fire go out!

SandiaBuddy's picture
SandiaBuddy
Posts: 1163
Joined: Apr 2017

Momma: You should be sure to let the oncologist know about the side effects.  If the oncologist does not bring it up, ask about reducing the dosage, it might make the side effects more controllable.

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