First time user

SophDan2
SophDan2 Member Posts: 150
edited July 2017 in Colorectal Cancer #1

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

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Comments

  • SophDan2
    SophDan2 Member Posts: 150
    Trubrit said:

    Welcome

    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

    Thanks Trubrit

    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
    ron50 Member Posts: 1,723
    Hi Barry

           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.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Welcome

    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

  • NHMike
    NHMike Member Posts: 213
    Watching the stories of others

    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.

  • Lily Flower
    Lily Flower Member Posts: 254
    Welcome Barry! There're many

    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. :)

  • Trubrit
    Trubrit Member Posts: 5,626 Member
    Welcome

    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

  • JanJan63
    JanJan63 Member Posts: 2,478
    Sorry you're here but welcome

    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
    SophDan2 Member Posts: 150
    ron50 said:

    Hi Barry

           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.

    Thx Ron

    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. 

  • SophDan2
    SophDan2 Member Posts: 150

    Welcome

    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

    Thank you Kim

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

  • SophDan2
    SophDan2 Member Posts: 150

    Welcome Barry! There're many

    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. :)

    Thx Lily

    I feel the extended family developing!

  • SophDan2
    SophDan2 Member Posts: 150
    edited July 2017 #12
    JanJan63 said:

    Sorry you're here but welcome

    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 

    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

  • SophDan2
    SophDan2 Member Posts: 150
    NHMike said:

    Watching the stories of others

    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.

    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

  • NHMike
    NHMike Member Posts: 213
    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

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

  • NHMike
    NHMike Member Posts: 213
    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

    Hello Barry,

    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

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,262 Member
    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

    Six

    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
    Trubrit Member Posts: 5,626 Member
    NHMike said:

    Hello Barry,

    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

    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

  • JanJan63
    JanJan63 Member Posts: 2,478
    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,

    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
    JanJan63 Member Posts: 2,478
    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

    I read that Europe is doing

    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 

  • NHMike
    NHMike Member Posts: 213
    edited July 2017 #20
    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

    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.

  • beaumontdave
    beaumontdave Member Posts: 1,207 Member
    Barry Welcome! Sounds like

    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