Xeloda versus 5FU

rthornton
rthornton Member Posts: 346 Member
edited March 2014 in Colorectal Cancer #1
I have a question for anyone who has experience with both oral 5FU and infusion 5FU. Although my scans recently came back clean (I was diagnosed stage 4 in May of this year), my oncologist still wants for me to complete my chemo cycles (I have five left and I dread every one of them). But the side effects get more intense with each cycle, mostly fatigue and that pesky burning diarrhea problem. I am wondering if there is some benefit to infusion chemo versus oral chemo, and also if I might experience less side effects with an oral treatment.

I meet with my oncologist this next Wednesday and plan to ask him about it, but I am curious about any opinions from all of you.

Thanks!

Rodney

Comments

  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    Hi Rodney,

    I too was stage 4, diagnosed almost 4 years ago (Oct 2nd to be exact!), and have been clear since my surgery in Jan 2002. I had the 5 fu after my surgery as a "clean up" technique. I had it for 6 months, and it was fed directly into my port, near my collar bone. I may be a bad example, and not very typical, but I literally had no side effects from the chemo at all. I would get pumped with it for about 2 hrs on Tuesdays, and would go home, like it never even happened. I was even convinced they were giving me a placebo and we gonna give me the "ha ha, fooled you" at the end!

    Everyone is different, but maybe my experience may help you get through this.

    Lemme know,
    Stacy
  • neeliec
    neeliec Member Posts: 106
    wow, Rodney!!! I have been thinking about you and praying for you. I too was recently "upgraded" to 4-- simply because the cancer spread to another side of the colon, and as you know they took the whole colon, as they did yours, too. I did not have the oral FU-- rather the pump for 36 hrs. My oncologist thinks the research favors slow infusion of FU over bolus or oral-- it is "short-lived" and if given over a long period of time, he says, it is more effective. I too, wondered about oral vs infusion or bolus-- Now i worry, like you, about starting new treatment. When I had my scan on WEd-- I had liquid stools for 2 days. I wonder if the new chemo will do this too.
    Are you taking immodium and sticking to a low residue diet? They seem to help.
    Thanks for all your help and encouragement, Rodney. blessings, neeelieC
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    Hi Rodney,
    I personally preferred the intravenous 5-FU to Xeloda. I am a hiker and the Xeloda caused me to get this really bad "hand and foot" syndrome. It also makes you feel pretty wierd. The side effects for me from the IV 5-FU were not as bad, plus it was only once a week where you take the pills daily.
    On the other hand, they say the Xeloda only targets cancer cells rather than killing healthy cells as well, like the IV 5-FU. If you are not a runner, skiier, etc. then you may find the Xeloda to be more convenient, but if I were you I would probably just tough it out for the next 5 weeks.
    Best wishes,
    Susan.
  • taraHK
    taraHK Member Posts: 1,952 Member
    Hi Rodney,
    I am on the same regime as you -- haven't experienced Xeloda. Had lengthy discussions with my onc and tried to do some research on my own. My understanding is that some studies have shown that the xeloda regime has milder side effects. But my oncologist found the opposite (in a small sample size, admittedly). And there is the hand/foot symptoms with Xeloda. Of course the xeloda regime is more convenient than what you and I are going through (slow drip in hospital). Whatever you decide, I wish you all the best. You are over half-way!! I just finished my 6th cycle (half-way) -- trying to catch up with you! I'm mostly dealing with mild fatigue and nausea at this stage -- and low white cells counts (I'm starting Neupogen now). Hang in there! The end is in sight!
    All the best,
    Tara
  • rthornton
    rthornton Member Posts: 346 Member
    taraHK said:

    Hi Rodney,
    I am on the same regime as you -- haven't experienced Xeloda. Had lengthy discussions with my onc and tried to do some research on my own. My understanding is that some studies have shown that the xeloda regime has milder side effects. But my oncologist found the opposite (in a small sample size, admittedly). And there is the hand/foot symptoms with Xeloda. Of course the xeloda regime is more convenient than what you and I are going through (slow drip in hospital). Whatever you decide, I wish you all the best. You are over half-way!! I just finished my 6th cycle (half-way) -- trying to catch up with you! I'm mostly dealing with mild fatigue and nausea at this stage -- and low white cells counts (I'm starting Neupogen now). Hang in there! The end is in sight!
    All the best,
    Tara

    Thank you all for your responses. I now have another question. What is this hand and foot thing. Is it like a neuropathy?

    Rodney
  • kerry
    kerry Member Posts: 1,313 Member
    rthornton said:

    Thank you all for your responses. I now have another question. What is this hand and foot thing. Is it like a neuropathy?

    Rodney

    Hi Rodney,

    I have been on Xeloda for 1 year and developed the hand/foot syndrome. In the beginning, my dosage of Xeloda was large and I developed blisters on both hands and feet and my skin became very dry and cracked. I bathed both in lotion, but my feet were so sore I could barely walk. The onc. lowered my dosage and symptoms become milder, however I did lose my tonails. THey are coming back in and the onc. lowered my dosage once again.

    All in all, I am doing better on Xeloda than I did on any other chemo. I am not nauseas, very mild diahrrea, only mild fatigue... I would much rather have the hand/foot syndrome than the nausea. I will be on Xeloda for probably another year.

    I hope this helps. No the hand/foot syndrome is not the same as neuropathy.

    Kerry
  • steved
    steved Member Posts: 834 Member
    The xeloda/5fu questin is one that is likely to come up time and time again as experience with xeloda increases. It has taken over from 5fu in some settings of pre-operative chemo for stage 3 cancers as it has the evidecne base in studies that shows it is as good as 5fu and in many studies is better tolerated. Teh experience and studies of its use in postop chemo or stage 4 is less comprehensive and so people are sticking witht the 5fu as tehy know it works until their is clear evidence that xeloda is as good/bettter.

    The side effect thing is very individual and while on a population basis xeloda seems better tolerated it means nothing to individuals as some peopel will still get major side effects on xeloda. The hand and foot thing is as describes- a blistering often very painful and difficult to treat. I understand it can happen on 5fu as well (I was warned of it when I took 5fu).
    Best to discuss your specific case with your onc- when I had my discussioni with my doc about xeloda he wasn't convinced it had enough evidence in studies to warrant its use yet (the UK is often slightly more cautious about new medicines than the US) and he worries about things like vomiting after taking it (dont lknow if it stayed down or not).

    Let us knwo what you learn from your doc as it is somehting of an evolving field and there are many here who would be interested. best of luck,

    Steve
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    steved said:

    The xeloda/5fu questin is one that is likely to come up time and time again as experience with xeloda increases. It has taken over from 5fu in some settings of pre-operative chemo for stage 3 cancers as it has the evidecne base in studies that shows it is as good as 5fu and in many studies is better tolerated. Teh experience and studies of its use in postop chemo or stage 4 is less comprehensive and so people are sticking witht the 5fu as tehy know it works until their is clear evidence that xeloda is as good/bettter.

    The side effect thing is very individual and while on a population basis xeloda seems better tolerated it means nothing to individuals as some peopel will still get major side effects on xeloda. The hand and foot thing is as describes- a blistering often very painful and difficult to treat. I understand it can happen on 5fu as well (I was warned of it when I took 5fu).
    Best to discuss your specific case with your onc- when I had my discussioni with my doc about xeloda he wasn't convinced it had enough evidence in studies to warrant its use yet (the UK is often slightly more cautious about new medicines than the US) and he worries about things like vomiting after taking it (dont lknow if it stayed down or not).

    Let us knwo what you learn from your doc as it is somehting of an evolving field and there are many here who would be interested. best of luck,

    Steve

    Hi Rodney. Interesting to see the different ways in which chemo is dispensed and particularly in different countries. I did 5Fu/leucovorin for 6 months. Administered intraveniously via canula on the top of the hand on a daily basis for 5 days straight then 3 weeks off.I had the canula put in and taken out each day...ouch!When I asked about having a port I was told I could not have one as I had to travel 100 miles return each day to get the chemo and infection was a concern. I can tell you that my veins were shot by the end of 6 months.As for side effects they increasingly worsened particularly in the last two cycles. I really had had enough of chemo by the 4th month. Diarrhea, vomiting , nausea, metallic taste...oh, and the burning backside too.There is definately a case for varying reactions to chemo as we have seen from posts to this site. Some have few effects, others have extreme effects. It never seems to show any real consistency. I know that I really had to struggle to do the last 2 cycles. I was unable to even drive myself to the clinic...go figure mate.
    I often wondered what the effects would have been on oral 5fu or if the port may have made things easier. I don't think the tablet form was available here back 2 years ago.
    cheers mate and hope the burnin butt subsides!
    kanga n Jen
  • joanneire
    joanneire Member Posts: 75 Member
    Hi
    My boyfriend is changing from 5FU to Xeloda (both combined with erbitux). He just missed one day's work every two weeks on 5FU but I think it was beginning to take its toll and the onc said that Xeloda would enable him lead a more normal life. As far as I can gather they both seem to do the same think. Hope it works out for you.

    Joanne