Starting oxaliplatin and 5FU

ninetoes
ninetoes Member Posts: 81
edited March 2014 in Colorectal Cancer #1
I'm starting Chemo on 6/3 and was wondering if anyone has had oxaliplatin and 5FU. I was diagnosed with stage 2 colon cancer and had surgery on 4/30 to remove 1 foot of my colon along with a baseball size tumor. The tumor was malignant and was told I have to do 12 cycles of Chemo.

Thanks
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Comments

  • bdee
    bdee Member Posts: 304
    Oxi and 5fu
    My first treatment was with oxi and 5fu, then avastin was added on the second treatment. With just oxi and 5fu on my first treatment, aside from some cold issues, was fine. Even though after five weeks of taking oxi, 5fu and avastin I couldn't eat, couldn't keep anything down if I could eat, was tired ALL the time. Sleeping most of it. My doctor told me he had 70 people on the same chemo drugs and a 70 year old man and I (54) had the worst of the side affects. After five weeks of no chemo, my doctor started me back on just 1/2 a dose of 5fu and avastin. Aside from being tired the whole week after the second treatment, I certainly like it better.

    I went for five months without eating any solid food and not being about to drink or touch anything cold, I would still go through it again because my CEA is 2.3, down from when I was taking it all (oxi, full 5fu and avastin).

    Good luck to you and don't let what I said scare you. As everyone tells me...it will get better when you get off it. Only my doctor won't tell me how many of these treatments I'll be getting. Every time I ask he just says "we will see what the tests tells us." I've been having treatments since February 12 and he won't give us a prognosis or tell us how long I'll be on chemo. We're hoping to take a 2 week vacation in September and he hasn't given us permission for that yet.

    Debbie
  • ninetoes
    ninetoes Member Posts: 81
    bdee said:

    Oxi and 5fu
    My first treatment was with oxi and 5fu, then avastin was added on the second treatment. With just oxi and 5fu on my first treatment, aside from some cold issues, was fine. Even though after five weeks of taking oxi, 5fu and avastin I couldn't eat, couldn't keep anything down if I could eat, was tired ALL the time. Sleeping most of it. My doctor told me he had 70 people on the same chemo drugs and a 70 year old man and I (54) had the worst of the side affects. After five weeks of no chemo, my doctor started me back on just 1/2 a dose of 5fu and avastin. Aside from being tired the whole week after the second treatment, I certainly like it better.

    I went for five months without eating any solid food and not being about to drink or touch anything cold, I would still go through it again because my CEA is 2.3, down from when I was taking it all (oxi, full 5fu and avastin).

    Good luck to you and don't let what I said scare you. As everyone tells me...it will get better when you get off it. Only my doctor won't tell me how many of these treatments I'll be getting. Every time I ask he just says "we will see what the tests tells us." I've been having treatments since February 12 and he won't give us a prognosis or tell us how long I'll be on chemo. We're hoping to take a 2 week vacation in September and he hasn't given us permission for that yet.

    Debbie

    Oxi and 5FU
    Thanks for the reply. The doctor said everyone is different and I read all the side effects, is very scary. My CEA was 3.8 and hoping for a very low number after the Chemo. I'm still healing from the surgery and having bathroom problems. I'm sure the Chemo won't help that.

    Good luck to you as well, and I hope you get off the Chemo soon.

    Dave
  • VickiCO
    VickiCO Member Posts: 917
    Welcome
    Welcome to the best board on the net! I am sorry we had to meet this way. I am on chemo now but only have 5FU, not oxaliplatin. Side effects vary by each person. Some have neuropthy in the hands and feet, vomiting, nausea, hair thinning or loss. BUT others have much milder reactions. The key is to let your medical staff know if you have ANY symptoms so they can combat them ASAP. There are anti-nausea drugs to help, and other things they can do.

    Might I suggest that you NOT do research on the net. Most of the material you will find is at least 5 years old, and treatments for colon cancer have advanced tremendously in the past 5 years. And don't pay attention to "statistics" - we are not statistics, we are individuals. I was DX'd as Stage 3 and if I read the stats at that time, I would have assumed it was hopeless. I am now one chemo treatment away from NED (No Evidence of Disease) in only 8 months.

    Come here often for support and questions. It's a great group.

    Many Hugs, Vicki
  • bdee
    bdee Member Posts: 304
    ninetoes said:

    Oxi and 5FU
    Thanks for the reply. The doctor said everyone is different and I read all the side effects, is very scary. My CEA was 3.8 and hoping for a very low number after the Chemo. I'm still healing from the surgery and having bathroom problems. I'm sure the Chemo won't help that.

    Good luck to you as well, and I hope you get off the Chemo soon.

    Dave

    Oxi and 5fu
    My doctor was very adamant about not comparing myself to my "neighbor". He was emphatic that just because I knew of someone who had a common side affect does not mean I'll have the same side affect. I know, because I talk to people in my chemo suite that I did have all the side affects, but to a higher degree.

    Good luck to you Dave, have a positive attitude going into chemo and I'll bet it will help. I was too scared going into mine, because I did read the internet about all the side affects. Wish I hadn't.
  • ninetoes
    ninetoes Member Posts: 81
    VickiCO said:

    Welcome
    Welcome to the best board on the net! I am sorry we had to meet this way. I am on chemo now but only have 5FU, not oxaliplatin. Side effects vary by each person. Some have neuropthy in the hands and feet, vomiting, nausea, hair thinning or loss. BUT others have much milder reactions. The key is to let your medical staff know if you have ANY symptoms so they can combat them ASAP. There are anti-nausea drugs to help, and other things they can do.

    Might I suggest that you NOT do research on the net. Most of the material you will find is at least 5 years old, and treatments for colon cancer have advanced tremendously in the past 5 years. And don't pay attention to "statistics" - we are not statistics, we are individuals. I was DX'd as Stage 3 and if I read the stats at that time, I would have assumed it was hopeless. I am now one chemo treatment away from NED (No Evidence of Disease) in only 8 months.

    Come here often for support and questions. It's a great group.

    Many Hugs, Vicki

    Thanks for the info. Yes, I
    Thanks for the info. Yes, I was told by my doctor side effects could be mild and that it's usually the neuropathy and fatigue, but I won’t know until I start. I’m trying to stay positive, it’s hard some times. I got my porta catheter in Friday and it’s really bugging me. The tube runs into my neck and it’s very hard to move my head around or get up from a laying position without feeling like it’s ripping out.


    I am staying away from the internet research, it’s making things worse. That’s why I came looking for a site like this to talk to people that are going through it.

    Thanks for taking the time to respond, I wish you good luck and a clean bill of health.


    Dave
  • VickiCO
    VickiCO Member Posts: 917
    ninetoes said:

    Thanks for the info. Yes, I
    Thanks for the info. Yes, I was told by my doctor side effects could be mild and that it's usually the neuropathy and fatigue, but I won’t know until I start. I’m trying to stay positive, it’s hard some times. I got my porta catheter in Friday and it’s really bugging me. The tube runs into my neck and it’s very hard to move my head around or get up from a laying position without feeling like it’s ripping out.


    I am staying away from the internet research, it’s making things worse. That’s why I came looking for a site like this to talk to people that are going through it.

    Thanks for taking the time to respond, I wish you good luck and a clean bill of health.


    Dave

    Fatigue
    Yes, literally everyone gets hit by the fatigue. Go with the flow, don't try to be heroic. When your body says "shut down and rest", then comply. Your attitude plays a big part. Keep smiling!

    Vicki
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    VickiCO said:

    Fatigue
    Yes, literally everyone gets hit by the fatigue. Go with the flow, don't try to be heroic. When your body says "shut down and rest", then comply. Your attitude plays a big part. Keep smiling!

    Vicki

    Joining Chemo Party
    Phil, Eric, Myself, and Johnnybegood will be joining you as we all have chemo on the same day. I'm on the same "cocktail" as you and tomorrow will start mey second treatment. I go in for two days of infusion and go home with the pump both days and then a disconnect on the third day with 11 days off.

    You are right behind me in treatment so let's just think of it as getting this party started so we can all celebrate when we are done.

    Welcome to the board and sorry you had to find us, but you will find a lot of amazing people here, with support and encouragement whenever you need it.

    Good luck on Wednesday - we will be going through the same thing.

    Kim
  • ninetoes
    ninetoes Member Posts: 81

    Joining Chemo Party
    Phil, Eric, Myself, and Johnnybegood will be joining you as we all have chemo on the same day. I'm on the same "cocktail" as you and tomorrow will start mey second treatment. I go in for two days of infusion and go home with the pump both days and then a disconnect on the third day with 11 days off.

    You are right behind me in treatment so let's just think of it as getting this party started so we can all celebrate when we are done.

    Welcome to the board and sorry you had to find us, but you will find a lot of amazing people here, with support and encouragement whenever you need it.

    Good luck on Wednesday - we will be going through the same thing.

    Kim

    Oxi and 5FU Party
    Yep, 3 hours on Wednesday, home with the pump and disco on Friday and off 11 days. How was your first treatment? Is the pump easy to deal with? So far this has been a very good experience on this site, better then surfing and reading all about side effects. I’m hoping to be able to work, I work downtown Chicago and drive 45 min then a 10min walk. So far not liking the porta cath.






    Thanks Kim, good luck to everyone.
  • JR
    JR Member Posts: 139
    ninetoes said:

    Oxi and 5FU Party
    Yep, 3 hours on Wednesday, home with the pump and disco on Friday and off 11 days. How was your first treatment? Is the pump easy to deal with? So far this has been a very good experience on this site, better then surfing and reading all about side effects. I’m hoping to be able to work, I work downtown Chicago and drive 45 min then a 10min walk. So far not liking the porta cath.






    Thanks Kim, good luck to everyone.

    Port
    It took me about two weeks for the port to stop bothering me. I still don't like it much. The tube above my collar bone sticks out like a sore thumb. Looks bad. But I guess its one of those necessary evils. Good luck.

    John
  • VickiCO
    VickiCO Member Posts: 917
    ninetoes said:

    Thanks for the info. Yes, I
    Thanks for the info. Yes, I was told by my doctor side effects could be mild and that it's usually the neuropathy and fatigue, but I won’t know until I start. I’m trying to stay positive, it’s hard some times. I got my porta catheter in Friday and it’s really bugging me. The tube runs into my neck and it’s very hard to move my head around or get up from a laying position without feeling like it’s ripping out.


    I am staying away from the internet research, it’s making things worse. That’s why I came looking for a site like this to talk to people that are going through it.

    Thanks for taking the time to respond, I wish you good luck and a clean bill of health.


    Dave

    Porta Cath
    I guess I am not understanding what you have? My port is entirely under the skin and I can't feel it unless I actually touch the area. Are you saying yours is external? If it's bugging you, tell the docs! There are other ways to receive chemo.

    Vicki
  • JR
    JR Member Posts: 139
    ninetoes said:

    Oxi and 5FU Party
    Yep, 3 hours on Wednesday, home with the pump and disco on Friday and off 11 days. How was your first treatment? Is the pump easy to deal with? So far this has been a very good experience on this site, better then surfing and reading all about side effects. I’m hoping to be able to work, I work downtown Chicago and drive 45 min then a 10min walk. So far not liking the porta cath.






    Thanks Kim, good luck to everyone.

    Pump
    The pump is another one of those necessary evils. It's not hard to deal with, It's just a pain in the *ss. It's a pretty tough little unit. I've dropped mine on a tile floor a couple of times and last week caught the tube on a sharp edge of an aluminum ladder. No harm done. It's always nice to have it taken off though.

    John
  • ninetoes
    ninetoes Member Posts: 81
    JR said:

    Pump
    The pump is another one of those necessary evils. It's not hard to deal with, It's just a pain in the *ss. It's a pretty tough little unit. I've dropped mine on a tile floor a couple of times and last week caught the tube on a sharp edge of an aluminum ladder. No harm done. It's always nice to have it taken off though.

    John

    Thanks for the reply, good
    Thanks for the reply, good luck to you!

    Dave
  • ninetoes
    ninetoes Member Posts: 81
    VickiCO said:

    Porta Cath
    I guess I am not understanding what you have? My port is entirely under the skin and I can't feel it unless I actually touch the area. Are you saying yours is external? If it's bugging you, tell the docs! There are other ways to receive chemo.

    Vicki

    It's under the skin, but the
    It's under the skin, but the tube going to my neck sticks out and the site of the port is tender. When I turn my head or lift my head up it bothers me. I talk to the doc and she says it's normal. I don't know what normal is anymore.

    Dave
  • maglets
    maglets Member Posts: 2,576
    welcome
    Welcome Dave to the sweetest little site there is. I have done oxy and xeloda and I have done 5FU without the oxy....very different experiences but I think anticipating your reactions is unwise because everybody really does do their own thing.

    there is a pretty good search button here and you could plug oxy in and catch up on some of our posts over the past few weeks. Don't be surprised if you are scared stiff on the first day.....that's in many ways the worst one because you simply do not know what to expect. Once you get started the fear moves back and you can get on with your LIFE.

    Don't rush....get nice and healed up from surgery and ask us anything!!!

    All best wishes.
    mags
  • ninetoes
    ninetoes Member Posts: 81
    maglets said:

    welcome
    Welcome Dave to the sweetest little site there is. I have done oxy and xeloda and I have done 5FU without the oxy....very different experiences but I think anticipating your reactions is unwise because everybody really does do their own thing.

    there is a pretty good search button here and you could plug oxy in and catch up on some of our posts over the past few weeks. Don't be surprised if you are scared stiff on the first day.....that's in many ways the worst one because you simply do not know what to expect. Once you get started the fear moves back and you can get on with your LIFE.

    Don't rush....get nice and healed up from surgery and ask us anything!!!

    All best wishes.
    mags

    Thanks mags, this has been a
    Thanks mags, this has been a very good experience so far. Yes, fear of the unknown. I remember sweating out my surgery, then waiting for the results of the biopsy, and now Chemo. I'm glad there are sites like this, a very scary thing to go through. It's nice to talk to people going through this (not that I wish this on anyone).


    Thanks Everyone,

    Dave
  • Shayenne
    Shayenne Member Posts: 2,342
    ninetoes said:

    Thanks mags, this has been a
    Thanks mags, this has been a very good experience so far. Yes, fear of the unknown. I remember sweating out my surgery, then waiting for the results of the biopsy, and now Chemo. I'm glad there are sites like this, a very scary thing to go through. It's nice to talk to people going through this (not that I wish this on anyone).


    Thanks Everyone,

    Dave

    Hi Dave!
    The port will feel better in a few weeks, I don't even feel mine anymore, I know the tube you're talking about is annoying though, I have one as well, which makes me look like I have this vein throbbing inside my neck, but it seemed to also go down abit. It will be tender to the touch for abit, I had the doctor prescribe me some creme that makes the skin numb there before they insert any needles in it, which works pretty well too..I gob it on an hour before I get to chemo, or for any blood draws, and I don't even feel the prick of the needles.

    I get FOLFIRI, so no oxy for me, but I do get the Irinotecan is it? fatigue is the main thing with the chemo's though, tired, I feel most tired the day after the pump comes off, and then the next few days I seem to bounce back to myself again :)

    Just rest when your body tells you to rest, and you'll be just fine :)

    Hugssss!
    ~Donna
  • ninetoes
    ninetoes Member Posts: 81
    Shayenne said:

    Hi Dave!
    The port will feel better in a few weeks, I don't even feel mine anymore, I know the tube you're talking about is annoying though, I have one as well, which makes me look like I have this vein throbbing inside my neck, but it seemed to also go down abit. It will be tender to the touch for abit, I had the doctor prescribe me some creme that makes the skin numb there before they insert any needles in it, which works pretty well too..I gob it on an hour before I get to chemo, or for any blood draws, and I don't even feel the prick of the needles.

    I get FOLFIRI, so no oxy for me, but I do get the Irinotecan is it? fatigue is the main thing with the chemo's though, tired, I feel most tired the day after the pump comes off, and then the next few days I seem to bounce back to myself again :)

    Just rest when your body tells you to rest, and you'll be just fine :)

    Hugssss!
    ~Donna

    Hi
    Thanks Donna, it's reassuring to hear that about the port. I'll have to ask about the cream. I have had so many IV's and blood draws, it would be nice to numb up the site.



    Thanks for the info

    Dave
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    ninetoes said:

    Oxi and 5FU Party
    Yep, 3 hours on Wednesday, home with the pump and disco on Friday and off 11 days. How was your first treatment? Is the pump easy to deal with? So far this has been a very good experience on this site, better then surfing and reading all about side effects. I’m hoping to be able to work, I work downtown Chicago and drive 45 min then a 10min walk. So far not liking the porta cath.






    Thanks Kim, good luck to everyone.

    Treatment
    Dave: I go three days in a row. I know this is not usual, but my oncologist has split up the cocktail into 2 days infusion at hospital and then go home with pump both days and disconnect on 3rd day. First two days I did notice my throat with a little cold sensation and that lasted for about an hour each day on the third day about 1/2 hour and then for the last 11 days nothing. Drinking anything cold. One thing they did not tell me is the steroids you get could keep you up all night so don't worry if you don't sleep for 3 or 4 nights. Also, another thing they didn't tell me is that I would wake up soaking wet. If you wear pajamas make sure you have an extra pair (or even two in my case) for the night. I have felt fine for the last 11 days.

    I would have been able to work by the way I felt, but I know they say the more treatments, the more it accumulates and your symptoms don't go away as fast, but everyone is different. I will keep you posted with my second treatment this week.

    Good luck!

    Kim
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    VickiCO said:

    Porta Cath
    I guess I am not understanding what you have? My port is entirely under the skin and I can't feel it unless I actually touch the area. Are you saying yours is external? If it's bugging you, tell the docs! There are other ways to receive chemo.

    Vicki

    Port
    My Power Port is under my skin but it is raised and is very visible. I'm afraid to hug anyone because it sticks up so much. It looks like there is a marble (or should I say an aggie) under my skin. I also can see my tube, but it doesn't bother me.

    Kim
  • lmliess
    lmliess Member Posts: 329
    ninetoes said:

    Hi
    Thanks Donna, it's reassuring to hear that about the port. I'll have to ask about the cream. I have had so many IV's and blood draws, it would be nice to numb up the site.



    Thanks for the info

    Dave

    Starting Folfox 6 in the morning!
    I am freaked out about this mainteneance round of chemo but I see I will be in good company. I had my colostomy surgery March 10 for the rectal tumor and my liver resection April 9 for the liver resection. So Tuesday morning I will go for my first of 8 rounds of Folfox 6 with Avastin. The side effects are scaring me but at this point I need to put my head down and go forward. I have to remeber this if the final stage to NED to get any remaining nasty cancer cells out.

    Wish me luck!!

    Linda