Quick Question on Folfox side effects

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Patrusha
Patrusha Member Posts: 487
edited March 2014 in Colorectal Cancer #1
For anyone who has taken the standard Folfox regimen.... I am scheduled to take a hit of the stuff every other week. On what "round" did you begin to experience any side effects that would have interfered with your attending a wedding? I'll explain later. Thanks!

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  • JoyceCanada
    JoyceCanada Member Posts: 134
    #2
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    I've completed round 6 yesterday 21st Aug. Heading out to a wedding (2 day drive).Wedding is to be held on the 2 September.I usually have side effects -finger tingles, tiredness, neausea etc on the first week but they lessen on my 2nd week off....it is a very special Neice who is being married and I wouldn't miss it for the world. 2 day drive is a pain, it is the be held in the north of Ontario near the Manitoba border...God's country :-)
  • betina61
    betina61 Member Posts: 642 Member
    #3
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    Hi! I just started yesteday with the Folfox treatment is going to be 12 of them, they sent me home with a pump for 48 hours that is a little unconfortable for me and then I have one week off. As far as side effects I am fine but that might change, the nurse even told me that probably I was going to be awake all night because of the steroids, but to my surprise I slept through the night,I hope for you is going to be the same, at least to the beginning we don't want to get scare.And congratulation in your desicion, the worst part always is that period in between until you decide. Don't look back. hugs, Betina
  • pink05
    pink05 Member Posts: 550
    #4
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    Patrusha,

    My dad was on the folfox regimen for about 4 months and I can tell you that he had neuropathy almost instantly, however, still was able to carry on with his everyday activities. You'll get through it!!!

    -Lee-
  • NanD
    NanD Member Posts: 58
    #5
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    Hi! You might not feel great the days you get your treatments (usually 2 days with pump going into the third day). After you're off the stuff for a couple of days you'll be good to go! If the wedding were the week off you'd be fine even after a good many cycles. Good luck-not being able to plan is kind of annoying but you'll find your off weeks you will feel up to most everything. Nancy
  • debralla
    debralla Member Posts: 203 Member
    #6
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    JoyceCanada said:

    I've completed round 6 yesterday 21st Aug. Heading out to a wedding (2 day drive).Wedding is to be held on the 2 September.I usually have side effects -finger tingles, tiredness, neausea etc on the first week but they lessen on my 2nd week off....it is a very special Neice who is being married and I wouldn't miss it for the world. 2 day drive is a pain, it is the be held in the north of Ontario near the Manitoba border...God's country :-)

    Patrusha.
    I had my port implanted then put in a wheel chair and rolled over to the chemo room . So my first folfox treatment was pretty rough . Second treatment is when I started getting the cold sensitivity and was pretty nauseated .Third treatment not so bad as they finally got me on the right pre meds. more cold issues , and I was pretty tired for about 2 or 3 days, then I would do pretty good until the next treatment . Jaw pain and slight numbness in fingers and toes again better by next treatment . Around treatment # 7 my hands and feet were numb and stayed that way with each treatment getting worse . I had some platelet issues around treatment # 8 and had to skip treatment . This happen one other time and my hands and feet were hurting and pretty numb ,So my Dr. pulled the Oxy . I have been off Oxy for about three months and will start it again tomorrow . So no more cold drinks for me . One thing I have learned is that everyone is different , But the cold sensitivity seems to effect everyone . You will find this out pretty quick . So go ahead and try that ice drink .which you will . I know I did just to see . you will find out real quick what we are talking about. I also had trouble breathing in cool air for the first few days .I always get real flushed all over my chest a few times on my face . I have since found out that is from the 5fu . I also had some painful red hands and feet with the 5fu . SpongeBob sent me some emollent cream which REALLY helped Wish I would have started it sooner . I had really long nails and had to cut them off around treatment # 5 again something I wish I would have done earlier as they were pretty sore . I keep them short now and always trim them before treatment . I use all biotene products for mouth care . and have not had to many mouth issues .Avastin ... They started me out on a hour drip for the first few treatments then dropped it to 30 min . I started getting some nose bleeds . When we moved and I started chemo here they started me out again on the 1 hour drip ,I had not had a nose bleed in awhile , Then one treament we did the 30 min and I had nose bleeds off and on all week , So I asked them to keep it at 1 hour and have not had any problems since. I go in tomorrow for treatment # 17 and I still find that I bounce back after a few days . Hope this helps . Good luck and keep us posted .
    Take Care and God Bless.
    Debra
  • JADot
    JADot Member Posts: 709 Member
    #7
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    Hi there:

    You will feel the side effects right away, from round 1. You're not going to feel great for the 3-4 days including the day you get the treatment on. After that you will recover. So, if the wedding is more than 3-4 days from your treatment day, you'll be fine. Just stay away from iced drinks.

    Cheers,
    Ying
  • Patrusha
    Patrusha Member Posts: 487
    #8
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    debralla said:

    Patrusha.
    I had my port implanted then put in a wheel chair and rolled over to the chemo room . So my first folfox treatment was pretty rough . Second treatment is when I started getting the cold sensitivity and was pretty nauseated .Third treatment not so bad as they finally got me on the right pre meds. more cold issues , and I was pretty tired for about 2 or 3 days, then I would do pretty good until the next treatment . Jaw pain and slight numbness in fingers and toes again better by next treatment . Around treatment # 7 my hands and feet were numb and stayed that way with each treatment getting worse . I had some platelet issues around treatment # 8 and had to skip treatment . This happen one other time and my hands and feet were hurting and pretty numb ,So my Dr. pulled the Oxy . I have been off Oxy for about three months and will start it again tomorrow . So no more cold drinks for me . One thing I have learned is that everyone is different , But the cold sensitivity seems to effect everyone . You will find this out pretty quick . So go ahead and try that ice drink .which you will . I know I did just to see . you will find out real quick what we are talking about. I also had trouble breathing in cool air for the first few days .I always get real flushed all over my chest a few times on my face . I have since found out that is from the 5fu . I also had some painful red hands and feet with the 5fu . SpongeBob sent me some emollent cream which REALLY helped Wish I would have started it sooner . I had really long nails and had to cut them off around treatment # 5 again something I wish I would have done earlier as they were pretty sore . I keep them short now and always trim them before treatment . I use all biotene products for mouth care . and have not had to many mouth issues .Avastin ... They started me out on a hour drip for the first few treatments then dropped it to 30 min . I started getting some nose bleeds . When we moved and I started chemo here they started me out again on the 1 hour drip ,I had not had a nose bleed in awhile , Then one treament we did the 30 min and I had nose bleeds off and on all week , So I asked them to keep it at 1 hour and have not had any problems since. I go in tomorrow for treatment # 17 and I still find that I bounce back after a few days . Hope this helps . Good luck and keep us posted .
    Take Care and God Bless.
    Debra

    Debra, thanks for the detail. That helps a lot! Why did you have to cut your nails? I just put on a new set of acylics.... will those have to come off? Please say it isn't so...

    I am really not looking forward to the cold issues, especially October through February (I live in Michigan!). But this too shall pass, eh?

    I'll stock up on Biotene... and hey, Spongebob, what's the name of that emollient cream you sent Debra? I want to get some on hand (no pun intended!).
  • Patrusha
    Patrusha Member Posts: 487
    #9
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    JoyceCanada said:

    I've completed round 6 yesterday 21st Aug. Heading out to a wedding (2 day drive).Wedding is to be held on the 2 September.I usually have side effects -finger tingles, tiredness, neausea etc on the first week but they lessen on my 2nd week off....it is a very special Neice who is being married and I wouldn't miss it for the world. 2 day drive is a pain, it is the be held in the north of Ontario near the Manitoba border...God's country :-)

    This is my nephew's wedding, Joyce! And like you, I don't want to miss it! Have fun at your niece's wedding.
  • Patrusha
    Patrusha Member Posts: 487
    #10
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    pink05 said:

    Patrusha,

    My dad was on the folfox regimen for about 4 months and I can tell you that he had neuropathy almost instantly, however, still was able to carry on with his everyday activities. You'll get through it!!!

    -Lee-

    Thanks Lee...
  • Patrusha
    Patrusha Member Posts: 487
    #11
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    betina61 said:

    Hi! I just started yesteday with the Folfox treatment is going to be 12 of them, they sent me home with a pump for 48 hours that is a little unconfortable for me and then I have one week off. As far as side effects I am fine but that might change, the nurse even told me that probably I was going to be awake all night because of the steroids, but to my surprise I slept through the night,I hope for you is going to be the same, at least to the beginning we don't want to get scare.And congratulation in your desicion, the worst part always is that period in between until you decide. Don't look back. hugs, Betina

    Betina, what steroids? I was not expecting that! I'm going to take home the pump, too. Can you hide it under your clothes? Is it something we can take off ourselves or does a nurse have to come out and disconnect the thing?
  • Patrusha
    Patrusha Member Posts: 487
    #12
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    NanD said:

    Hi! You might not feel great the days you get your treatments (usually 2 days with pump going into the third day). After you're off the stuff for a couple of days you'll be good to go! If the wedding were the week off you'd be fine even after a good many cycles. Good luck-not being able to plan is kind of annoying but you'll find your off weeks you will feel up to most everything. Nancy

    I've heard this kind of time line from a lot of people, Nancy. I work. So if I am typical, and get my treatment on Friday morning... will I be able to work that afternoon? Will I be able to go to work on Monday?
  • Patrusha
    Patrusha Member Posts: 487
    #13
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    JADot said:

    Hi there:

    You will feel the side effects right away, from round 1. You're not going to feel great for the 3-4 days including the day you get the treatment on. After that you will recover. So, if the wedding is more than 3-4 days from your treatment day, you'll be fine. Just stay away from iced drinks.

    Cheers,
    Ying

    Thanks, Ying. I think you answered my question to Nancy (above). Maybe I'll schedule treatment for Friday afternoon and just plan on being in bed for the next two or three days...
  • Patrusha
    Patrusha Member Posts: 487
    #14
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    debralla said:

    Patrusha.
    I had my port implanted then put in a wheel chair and rolled over to the chemo room . So my first folfox treatment was pretty rough . Second treatment is when I started getting the cold sensitivity and was pretty nauseated .Third treatment not so bad as they finally got me on the right pre meds. more cold issues , and I was pretty tired for about 2 or 3 days, then I would do pretty good until the next treatment . Jaw pain and slight numbness in fingers and toes again better by next treatment . Around treatment # 7 my hands and feet were numb and stayed that way with each treatment getting worse . I had some platelet issues around treatment # 8 and had to skip treatment . This happen one other time and my hands and feet were hurting and pretty numb ,So my Dr. pulled the Oxy . I have been off Oxy for about three months and will start it again tomorrow . So no more cold drinks for me . One thing I have learned is that everyone is different , But the cold sensitivity seems to effect everyone . You will find this out pretty quick . So go ahead and try that ice drink .which you will . I know I did just to see . you will find out real quick what we are talking about. I also had trouble breathing in cool air for the first few days .I always get real flushed all over my chest a few times on my face . I have since found out that is from the 5fu . I also had some painful red hands and feet with the 5fu . SpongeBob sent me some emollent cream which REALLY helped Wish I would have started it sooner . I had really long nails and had to cut them off around treatment # 5 again something I wish I would have done earlier as they were pretty sore . I keep them short now and always trim them before treatment . I use all biotene products for mouth care . and have not had to many mouth issues .Avastin ... They started me out on a hour drip for the first few treatments then dropped it to 30 min . I started getting some nose bleeds . When we moved and I started chemo here they started me out again on the 1 hour drip ,I had not had a nose bleed in awhile , Then one treament we did the 30 min and I had nose bleeds off and on all week , So I asked them to keep it at 1 hour and have not had any problems since. I go in tomorrow for treatment # 17 and I still find that I bounce back after a few days . Hope this helps . Good luck and keep us posted .
    Take Care and God Bless.
    Debra

    Debra, another question (anyone else feel free to answer). Why is it so hard to have the first chemo on the day you get the port, or shortly thereafter? They keep pushing back my port installation and I might need to do this (get the port and have chemo in a day or so).
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #15
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    Hi Patrusha -

    I had Xeloda/oxaliplatin/Avastin - also called Xelox plus Avastin and essentially the same as Folfox (at least the Xeloda/oxaliplatin is essentially the same). If you can manage chemo one week and the wedding the next week,you should be fine. Last summer /fall I had my second cycle of chemo and a week later went on a wonderful vacation. Same thing again after 4th cycle. So as long as you give yourself a short rest period, you should be ok.

    Betsy
  • debralla
    debralla Member Posts: 203 Member
    #16
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    Patrusha said:

    Debra, another question (anyone else feel free to answer). Why is it so hard to have the first chemo on the day you get the port, or shortly thereafter? They keep pushing back my port installation and I might need to do this (get the port and have chemo in a day or so).

    Patrusha.
    Well being a stage 4 My Dr. wanted to start chemo asap . I would guess a lot of Dr's. would like for the port site to heal somewhat before begining chemo ,especially if avastin is involved. I did get avastin on my first day . No problems there .
    After a few rounds of chemo my finger tips were very tender and they were very brittle looking . Plus it is one less thing I had to worry about as far as germs .I would ask your Onc nurse about the acylic nails . In fact you will find that your Onc nurse will be your best go to person . He/she will be the person who will give you all the info you need . You will see this person more than you will your Dr. and if you have any questions or concerns they are always happy to help .
    Ask about numbing cream to put on your port . mine gave me some to take home and I put it on at least an hour before I go in .
    Find yourself a Mary Kay dealer and ask about the emollient cream ..
    I buy my biotene products at Wall-mart .
    Hope this helps .
    Take CARE AND God Bless.
    Debra
  • vinny3
    vinny3 Member Posts: 928 Member
    #17
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    If the wedding is the second or off week it should not be a problem. I am able to do about anything that week-even having a cocktail.
    ****
  • betina61
    betina61 Member Posts: 642 Member
    #18
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    Patrusha said:

    Betina, what steroids? I was not expecting that! I'm going to take home the pump, too. Can you hide it under your clothes? Is it something we can take off ourselves or does a nurse have to come out and disconnect the thing?

    The steroids I am taking is called Dexamethasone and the pamphlet says is to treat nausea, vomiting ,allergies etc.As I said in my last post to you I am feeling fine. Today I have to go to the chemo facility so that they can disconect the pump,about hiding the pump under the cloth, it depends the way you dress , if you wear really loose cloth I think you could hide it,they will give you one of those belt bags,so that you could put the pump there, for me this part of bringing the pump home is the worst, thank goodness is only 48 hours, but anyway I already started to count that I only have now 11 more to go.

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