Xeloda - Urgent advice needed

mkaz
mkaz Member Posts: 12
edited March 2014 in Colorectal Cancer #1
Hi,
All you folks out there that are treating your colon cancer by using Xeloda. I saw some messages posted the other day. I am trying to decide which course of treatment to follow. Xeloda or Folfox. I had my right ascending colon removed along with 17 lymph nodes. 3 of these nodes did have cancer. Did any of you Xeloda users have lymph node involvement. I am having a very difficut time making this decision. Help!
Mary Kaz

Comments

  • msccolon
    msccolon Member Posts: 1,917 Member
    #2
    good luck!
    I haven't used Xeloda, so I can't help you with that decision, but I am sure somebody will chime in here real soon with their thoughts. I had 25 lymph nodes removed and 3 of them had cancer. I was initially started on FOLFOX and had to drop the oxaliplatin after 3 treatments due to toxicity issues; so I continued the 6 months with just 5FU and Leucovorin (Xeloda is a pill form of the 5FU). Didn't Farrah Fawcett go with just Xeloda? Tough decision to make! I think Kathleen and others have posted about their Dr who has a website online that accepts questions and such, you might want to consider consulting him. Get second and even third opinions from other oncologists regarding your staging, etc and see what they have to say. That should help you immensely in deciding which might be the better route. Every body is different and every cancer is different, even if it does carry the same name! Keep us posted, ok?
    mary
  • mkaz
    mkaz Member Posts: 12
    #3
    msccolon said:

    good luck!
    I haven't used Xeloda, so I can't help you with that decision, but I am sure somebody will chime in here real soon with their thoughts. I had 25 lymph nodes removed and 3 of them had cancer. I was initially started on FOLFOX and had to drop the oxaliplatin after 3 treatments due to toxicity issues; so I continued the 6 months with just 5FU and Leucovorin (Xeloda is a pill form of the 5FU). Didn't Farrah Fawcett go with just Xeloda? Tough decision to make! I think Kathleen and others have posted about their Dr who has a website online that accepts questions and such, you might want to consider consulting him. Get second and even third opinions from other oncologists regarding your staging, etc and see what they have to say. That should help you immensely in deciding which might be the better route. Every body is different and every cancer is different, even if it does carry the same name! Keep us posted, ok?
    mary

    Xeloda - Help
    Thanks for the feedback Mary. I'm really hesitant to do the Folfox because I know how aggressive and toxic it is. I know my body and I'm afraid I won't be able to handle it. I can't even take antibiotics without having the shits! Can I ask you, are you a small person? I know they adjust the dosage according to weight and skin area. But I'm under 5 foot and these drugs scare me. Is the oxaliplatin the drug that you take for 46 hours after the initial chemo injection?

    Thanks,
    Mary Kaz
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
    Xeloda and Avastin
    Hi Mary,

    I posted a response on Xeloda vs. Folfox to you on another thread (I think that was to you, anyhow). I had expressed my thoughts on going with the most aggressive protocol, which would be the Folfox. I've just read here though, that you're worried about its toxicity effect on you, as you seem to have a very sensitive system.

    One other possibility to consider and discuss with your doctor... a combo of Avastin and Xeloda. Most likely, that is what I'll be taking soon (depending upon PET scan results), when/if I go on maintenance treatment. My oncologist had actually talked about Avastin alone, but another oncologist I consulted with said he'd recommend Avastin along with some Xeloda. I know your situation is different than mine in that you're not doing a maintenance, but mine would also be for prevention. Recent studies on using Avastin have been for both 6 months on it and a year on it. Studies showed that Avastin can be effective way to prevent recurrence, as it works on not allowing bloodflow to tumor cells. It's easier on the system than most chemos- it's actually not a "chemo", so it supposedly doesn't have the toxic effect. Its side effects do include possible high blood pressure, some bloody noses. All of them have some possible scarey side effects, so you just have to weigh them against each other. This is just one more possibility to discuss and think about.

    My experience on Xeloda (which I've most recently taken while doing treatments once every two weeks of Avastin and irinotecan (CPT-11/Camptosar). I've had diahrrea, but I think that was mostly from the irinotecan. The Xeloda does cause some hand/foot syndrome, which you've probably read about. In comparing Xeloda (which is the oral form of 5FU) to 5FU in a pump, I actually had less side effects while on Xeloda in comparison to 5FU. I've read it was the reverse for some people, though.

    God bless and best wishes to you as you research and sort all this out in order to make a decision.

    Lisa
  • msccolon
    msccolon Member Posts: 1,917 Member
    #5
    mkaz said:

    Xeloda - Help
    Thanks for the feedback Mary. I'm really hesitant to do the Folfox because I know how aggressive and toxic it is. I know my body and I'm afraid I won't be able to handle it. I can't even take antibiotics without having the shits! Can I ask you, are you a small person? I know they adjust the dosage according to weight and skin area. But I'm under 5 foot and these drugs scare me. Is the oxaliplatin the drug that you take for 46 hours after the initial chemo injection?

    Thanks,
    Mary Kaz

    not small
    I am 5'5" was around 140 when i was doing the oxi. No, oxi is done in a long infusion. The pump contains Leucovorin, which does nothing more than keep the other drugs in your system longer so they can do the work.

    Regarding knowing your body ... i think you'll be surprised at how strong your body is and how well it fights for you. Diarrhea in response to antibiotics is normal, since it kills off the bacteria in your colon that forms your stool. I would think that means your body has a STRONG response rather than a weak response! I am sure you are experiencing more the fear of the unknown than anything else. Like everything else that is unpleasant, you just have to decide the best plan, go forward equipped as best you can and keep an eye out for those things you need to keep an eye out for. Once the journey is begun, it rarely manages to reach the heights we were imagining in our fear and horror!

    mary
  • nanagrandma
    nanagrandma Member Posts: 40
    #6
    lisa42 said:

    Xeloda and Avastin
    Hi Mary,

    I posted a response on Xeloda vs. Folfox to you on another thread (I think that was to you, anyhow). I had expressed my thoughts on going with the most aggressive protocol, which would be the Folfox. I've just read here though, that you're worried about its toxicity effect on you, as you seem to have a very sensitive system.

    One other possibility to consider and discuss with your doctor... a combo of Avastin and Xeloda. Most likely, that is what I'll be taking soon (depending upon PET scan results), when/if I go on maintenance treatment. My oncologist had actually talked about Avastin alone, but another oncologist I consulted with said he'd recommend Avastin along with some Xeloda. I know your situation is different than mine in that you're not doing a maintenance, but mine would also be for prevention. Recent studies on using Avastin have been for both 6 months on it and a year on it. Studies showed that Avastin can be effective way to prevent recurrence, as it works on not allowing bloodflow to tumor cells. It's easier on the system than most chemos- it's actually not a "chemo", so it supposedly doesn't have the toxic effect. Its side effects do include possible high blood pressure, some bloody noses. All of them have some possible scarey side effects, so you just have to weigh them against each other. This is just one more possibility to discuss and think about.

    My experience on Xeloda (which I've most recently taken while doing treatments once every two weeks of Avastin and irinotecan (CPT-11/Camptosar). I've had diahrrea, but I think that was mostly from the irinotecan. The Xeloda does cause some hand/foot syndrome, which you've probably read about. In comparing Xeloda (which is the oral form of 5FU) to 5FU in a pump, I actually had less side effects while on Xeloda in comparison to 5FU. I've read it was the reverse for some people, though.

    God bless and best wishes to you as you research and sort all this out in order to make a decision.

    Lisa

    Xeloda
    I had 18 lymph nodes removed and 9 of them tested positive for cancer. I took I think 4500ml. a day in conjunction with my radiation,so I took them 5 days a week and had the weekends off fo 6 weeks. I was also getting oxiplaton once a week. Ater that I had a month off then I did the Folfox for two months. That is what my doctor wanted to do to be aggressive. The only thing i have now is the neuropathy in the feet, but i take neurotin for that. I had no signs of cancer with my pet scan last June, so it worked for me.

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