how is everyones folfox going ?

pete43lost_at_sea
pete43lost_at_sea Member Posts: 3,900 Member
edited March 2014 in Colorectal Cancer #1
hope everyone is having a good cycle.

my folfox has been ok except the diarrhea was acting up,
so i went in and got a couple of litres rehydrated at the chemo ward Friday.
mainly as prevention.
i think the 2xcodiene and the 2xgastrow stops are working ok for me. I also had a bulky diet and backing off on the volume of veg juice.
this has kept the diarrhea managable.

I have also noticed the cold tingles persisting a bit longer than last treatment.

just sending positive vibes that everyones folfox is as good as it can be.

Pete

Comments

  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #2
    Pete
    UGH .... that's the best word I can think of to sum it up.

    But, on a positive note FOLFX #6 was so much easier than #5 which had me truly considering stopping chemo altogether. I don't know what happened with #5 but boy it was something else. I'm glad I listened to my buddies here on the boards and stuck it out. I do notice that the side effects are taking longer to dissapate and the fatigue is increasing. Meaning that I'm having less "almost normal days" in the cycle now. But ... another positive .... I'm half way done!!

    Tomorrow is FOLFOX #7 for me and I'm happy I'm on the downside of the FOLFOX slope. Woo hoo
  • TMac52
    TMac52 Member Posts: 352
    #3
    Lori-S said:

    Pete
    UGH .... that's the best word I can think of to sum it up.

    But, on a positive note FOLFX #6 was so much easier than #5 which had me truly considering stopping chemo altogether. I don't know what happened with #5 but boy it was something else. I'm glad I listened to my buddies here on the boards and stuck it out. I do notice that the side effects are taking longer to dissapate and the fatigue is increasing. Meaning that I'm having less "almost normal days" in the cycle now. But ... another positive .... I'm half way done!!

    Tomorrow is FOLFOX #7 for me and I'm happy I'm on the downside of the FOLFOX slope. Woo hoo

    #4
    I am doing treatment #4 tomorrow and not looking forward to it. Tonight and tomorrow we have sub-zero temps forcasted. This has got to be the worst time of thr year for this type of chemo. Going to my sons hockey games in the colds rinks are torchure but missing one of his games would be worse, so thats not an option.
    Tom
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Treatment
    Oh remember that folfox. Sounds like you are handling it fairly well. It is a rough road to take and can be so hard on the hands and feet. Yup the "runs" come with that treatment. Was supposed to have a reversal of my ileostomy but opted to have it done after treatment was completed. Hoping that future treatments go ok for you.

    Kim
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    #5
    #8
    I have number 8 tomorrow. Like Lori my Folfox is a mystery! #3,#4,#5,#7 were so bad I thought and I am still thinking about stopping. #1,#2,#6 not so bad. I don't know what surprise #8 will bring and of course there is #9,#10,#11,#12 yet to come if I decide to continue. #5 was the worst I'd say and often thought death wouldn't be so bad! Hope your treatments and everyone else stays mild. Lou
  • luvmum
    luvmum Member Posts: 457 Member
    #6
    my mum's first folfox
    Hi Pete,

    My mum has her 1st folfox on 3rd and 10th Jan (the onc divided one treatment into two, an infused in two consecutive weeks). After the first half of the infusion, she was ok - only lost her appetite. However, after the second half, she started having severe diarrhea (up to 14 times a day!). Without much choice, we sent her to the hospital...

    She also has cold tingles but it didn't last long. She wears gloves most of the time and use cream to keep her foots and hands moist. I guess all these help.

    I hope your next folfox will be as good as it can be too.

    With my best wishes and regards,
    Dora
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    #7
    luvmum said:

    my mum's first folfox
    Hi Pete,

    My mum has her 1st folfox on 3rd and 10th Jan (the onc divided one treatment into two, an infused in two consecutive weeks). After the first half of the infusion, she was ok - only lost her appetite. However, after the second half, she started having severe diarrhea (up to 14 times a day!). Without much choice, we sent her to the hospital...

    She also has cold tingles but it didn't last long. She wears gloves most of the time and use cream to keep her foots and hands moist. I guess all these help.

    I hope your next folfox will be as good as it can be too.

    With my best wishes and regards,
    Dora

    On to #7 tomorrow also.
    On to #7 tomorrow also. Being doing fairly well with it, just get nausea-vomiting on Thursday. I to also notice the cold sensativity to the hands lasting longer ea round.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #8
    Kenny H. said:

    On to #7 tomorrow also.
    On to #7 tomorrow also. Being doing fairly well with it, just get nausea-vomiting on Thursday. I to also notice the cold sensativity to the hands lasting longer ea round.

    are we on the folfox express together? keep faith! be positive!
    was just concerned as I had not heard from many of my folfox buddies.

    I suspect silence as not good news generally.

    Glad to hear from most on our folfox express.

    I can see positives out of everyones senario, even though I have to look hard sometimes.

    I hope, pray and believe this chemo is killing all of our remaining cancers.

    The side effects are terrible for some at times, I believe maintaining faith in the benefit essential for maximising my long term chances.

    I have to keep my faith in what I decided to start and stay positive, I hope you all can as well.

    I pray and hope our next cycle will be better than the last and a step closer to being cancer free for us all.

    cheers,
    Pete
  • Steve Z
    Steve Z Member Posts: 51
    #9
    One year removed
    Hang in there. I was thinking of this yesterday when it was 2 degrees out. Before you know it, this time will be in the rear view mirror. Communicate what your going through with those that can help. Talk to your caregivers, Docs and Nurses. In my case the Nurses helped me through a lot. While all I wanted was to be "normal" again, at the time managing this process was the most important thing to me and my family. It's OK to be selfish, this is the cost or investment that your family and you make. Plan to pay it back over the many years to come.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #10
    Lori-S said:

    Pete
    UGH .... that's the best word I can think of to sum it up.

    But, on a positive note FOLFX #6 was so much easier than #5 which had me truly considering stopping chemo altogether. I don't know what happened with #5 but boy it was something else. I'm glad I listened to my buddies here on the boards and stuck it out. I do notice that the side effects are taking longer to dissapate and the fatigue is increasing. Meaning that I'm having less "almost normal days" in the cycle now. But ... another positive .... I'm half way done!!

    Tomorrow is FOLFOX #7 for me and I'm happy I'm on the downside of the FOLFOX slope. Woo hoo

    UPDATE on me
    FOLFOX #7 was delayed due to WBCs, PLTs, RBCs all down below infusion rates. Now, I'm feeling a bit scared because last time I had a week off, right before #5, the next infusion felt like the worse ever. Now, I'm scared that #7 will be like #5 was and I don't think I can take another like that one. Hoping that isn't the case this time. I still have tingling fingers and feet and feel like I haven't recuperated from #6. I don't knpow why they call it fatigue ... exhausion is what I call it.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #11
    Lori-S said:

    Pete
    UGH .... that's the best word I can think of to sum it up.

    But, on a positive note FOLFX #6 was so much easier than #5 which had me truly considering stopping chemo altogether. I don't know what happened with #5 but boy it was something else. I'm glad I listened to my buddies here on the boards and stuck it out. I do notice that the side effects are taking longer to dissapate and the fatigue is increasing. Meaning that I'm having less "almost normal days" in the cycle now. But ... another positive .... I'm half way done!!

    Tomorrow is FOLFOX #7 for me and I'm happy I'm on the downside of the FOLFOX slope. Woo hoo

    UPDATE on me
    shoot double post ... sorry
  • kmacknj
    kmacknj Member Posts: 7
    #12
    Steve Z said:

    One year removed
    Hang in there. I was thinking of this yesterday when it was 2 degrees out. Before you know it, this time will be in the rear view mirror. Communicate what your going through with those that can help. Talk to your caregivers, Docs and Nurses. In my case the Nurses helped me through a lot. While all I wanted was to be "normal" again, at the time managing this process was the most important thing to me and my family. It's OK to be selfish, this is the cost or investment that your family and you make. Plan to pay it back over the many years to come.

    4 Down 2 to go
    Well I have 4 treatments in the books and two to go before I either start radiation or maybe a couple more folfox. the Sloan docs are saying april or may for my surgery. the treatemtns have been ok. the cold sensitivity in the fingers is lasting pretty much all the time and that bothers me a little. recently getting some diarhea and the colostomy is really annoying..... really cant wait for the reversal there. fingers crossed this whole thing works. feel pretty good. little tired when i come off the bottle for 2-3 days but not too bad. i'll take this to get healthy any day. Hope all are chugging along and we will make it!!!

    On a bright note the docs are cool with me taking a work trip to london for 5 days in between my treatments o I am psyched for that!! a small victory in this sinister battle
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #13
    kmacknj said:

    4 Down 2 to go
    Well I have 4 treatments in the books and two to go before I either start radiation or maybe a couple more folfox. the Sloan docs are saying april or may for my surgery. the treatemtns have been ok. the cold sensitivity in the fingers is lasting pretty much all the time and that bothers me a little. recently getting some diarhea and the colostomy is really annoying..... really cant wait for the reversal there. fingers crossed this whole thing works. feel pretty good. little tired when i come off the bottle for 2-3 days but not too bad. i'll take this to get healthy any day. Hope all are chugging along and we will make it!!!

    On a bright note the docs are cool with me taking a work trip to london for 5 days in between my treatments o I am psyched for that!! a small victory in this sinister battle

    Woo hoo
    for that trip to London. I'm so happy to hear that you are feeling up to it and get to go. Congrats!
  • OGammy01
    OGammy01 Member Posts: 67
    #14
    pete43lost_at_sea said:

    are we on the folfox express together? keep faith! be positive!
    was just concerned as I had not heard from many of my folfox buddies.

    I suspect silence as not good news generally.

    Glad to hear from most on our folfox express.

    I can see positives out of everyones senario, even though I have to look hard sometimes.

    I hope, pray and believe this chemo is killing all of our remaining cancers.

    The side effects are terrible for some at times, I believe maintaining faith in the benefit essential for maximising my long term chances.

    I have to keep my faith in what I decided to start and stay positive, I hope you all can as well.

    I pray and hope our next cycle will be better than the last and a step closer to being cancer free for us all.

    cheers,
    Pete

    The Folfox Express
    Hi Pete,
    I just had #5 today. It is an interesting journey, isn't it. I usually don't start feeling bad until the pump comes off Thursday and I have an appointment with a liver specialist the very next day in New Orleans :( I am anxious to see if and when I can have surgery. I agree faith and a positive additude are key in fighting this beast.

    Diane
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #15
    Lori-S said:

    Woo hoo
    for that trip to London. I'm so happy to hear that you are feeling up to it and get to go. Congrats!

    planning a trip at the end of folfox to fiji in july
    thanks everyone, anyone else planning a folfox graduation holiday ?
    its a really positive goal for me.
    cheers,
    pete
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #16
    pete43lost_at_sea said:

    planning a trip at the end of folfox to fiji in july
    thanks everyone, anyone else planning a folfox graduation holiday ?
    its a really positive goal for me.
    cheers,
    pete

    I'm planning a trip to the OR in May
    To get my reversal and hernia/adhesions taken care. I'm hoping that a good reward!

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