maintenance of chemo

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jillpls
jillpls Member Posts: 238
edited March 2014 in Colorectal Cancer #1
Has anyone been on maintenance chemo and for how long? I just finished 13 rounds of folifri with Avastin. I was going to go in for surgery to remove the nodes in the lung and liver but they are too small to find so they put me on a maintenance schedule of xeloda and Avastin. I just don't know for how long. What side effects with xeloda?? I'm going to be on a low dose.

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  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
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    Hi,
    I'm currently on chemo
    Hi,
    I'm currently on chemo for the second time, but my oncologist said that I'll likely be on a maintenance of Xeloda and Avastin, just like you, after I finish my current chemo. Supposedly, according to my oncologist, there's some report coming out soon that shows the benefit of staying on Avastin after regular chemo for up to a year. That's what I'll be probably facing for a while. I've not really had any bad side effects from Avastin- this is the second time I've been on it. Actually, the first time, I took it along with Folfox and it did cause my blood pressure to sky rocket and I had nose bleeds from it. This time, however, my blood pressure is fair. I do have "bloody tissues" sometimes when I blow my nose, but I've not had any regular nose bleeds like before. I'm doing fine w/ the Xeloda also. My chemo infusions consist of irinotecan (Camptosar/CPT-11) and Avastin. I'm on the Xeloda for 4 pills a day for two weeks on/two weeks off (that particular schedule may be changing though).
    Best wishes to you-
    Lisa
  • jillpls
    jillpls Member Posts: 238
    #3
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    lisa42 said:

    Hi,
    I'm currently on chemo
    Hi,
    I'm currently on chemo for the second time, but my oncologist said that I'll likely be on a maintenance of Xeloda and Avastin, just like you, after I finish my current chemo. Supposedly, according to my oncologist, there's some report coming out soon that shows the benefit of staying on Avastin after regular chemo for up to a year. That's what I'll be probably facing for a while. I've not really had any bad side effects from Avastin- this is the second time I've been on it. Actually, the first time, I took it along with Folfox and it did cause my blood pressure to sky rocket and I had nose bleeds from it. This time, however, my blood pressure is fair. I do have "bloody tissues" sometimes when I blow my nose, but I've not had any regular nose bleeds like before. I'm doing fine w/ the Xeloda also. My chemo infusions consist of irinotecan (Camptosar/CPT-11) and Avastin. I'm on the Xeloda for 4 pills a day for two weeks on/two weeks off (that particular schedule may be changing though).
    Best wishes to you-
    Lisa

    folfiri treatment
    HI Lisa,
    Thank you for responding. I was on the treatment you are currently on except with the pump. I did 13 treatments. Now I'll be taking 3 pills in the morning and 3 at night for a total of 850 ml per square ...what ever. It's supposed to be a lower dose than what other doctors say but this is from UCSF. That's where I go and I trust my dr 100%. I'm glad you don't have too many side effects. I too had lots of bleeding noses, but it's gotten way better. Really gone now. I start me new regime on Monday. Take care and happy 2009!
    Jill
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
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    jillpls said:

    folfiri treatment
    HI Lisa,
    Thank you for responding. I was on the treatment you are currently on except with the pump. I did 13 treatments. Now I'll be taking 3 pills in the morning and 3 at night for a total of 850 ml per square ...what ever. It's supposed to be a lower dose than what other doctors say but this is from UCSF. That's where I go and I trust my dr 100%. I'm glad you don't have too many side effects. I too had lots of bleeding noses, but it's gotten way better. Really gone now. I start me new regime on Monday. Take care and happy 2009!
    Jill

    Hi Jill,
    The Xeloda I'm
    Hi Jill,

    The Xeloda I'm currently on totals 2,000 mg./day. I take 2 pills in a.m. and another in p.m., each are 500 mg. I've heard of others taking more than that- don't really know what's best. I imagine the side effects increase w/ increased dose. Happy New Year to you, too- I'll be interested in how you're doing on the Xeloda in a couple of months.
    Take care,
    Lisa
  • MoonDragon
    MoonDragon Member Posts: 183
    #5
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    Xeloda Fun
    Hi!
    I started on Xeloda and was told ahead of time to expect diahrrea. I had diahrrea so bad that I literally couldn't leave the bathroom without wearing diapers and this went on for several weeks. I called my oncologist to find out if this was normal and was scolded for not calling a lot sooner. I just figured that bad diahrrea was to be expected. It turns out that I'm missing the enzyme that the body makes that helps the xeloda break down and do it's job and I was started all over again on 5FU/oxipilatin after having to give my soupy insides a 6 week break. If you find that you have severe diahrrea, contact your oncologist right away. Heck with colon cancer and surgery and treatment, diahrrea and constipation are common but don't let it go too far thinking it's normal! The best of luck to you!
  • taraHK
    taraHK Member Posts: 1,952 Member
    #6
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    About to!
    I'm so glad you posted this because I was about to post something similar.

    I've been on XELOX (Xeloda plus oxaliplatin) -- finished 5 out of 6 cycles. My oncologist and I decided to stop the oxaliplatin (getting too toxic for me) and continue with just xeloda. He is saying 6 months but I have a feeling he is thinking of longer term/maintenance for me, if the side effects are manageable.

    So I've already been on the xeloda 5 cycles (twice a day for 2 weeks, then1 week off). I think I can separate out the side effects from xeloda versus oxaliplatin, since I've been on oxaliplatin before (with other drugs).

    So far, my side effects have been pretty minimal. Mild fatigue, ?mild nausea, bit of stomach cramping. I've had a bit of peeling/blisters on my feet (and dry, sore hands) but not at all bad so far.

    I'd love to stay in touch with you (all) about long-term xeloda. This is great timing for me.....

    Good luck to all!

    Love,
    Tara
  • maglets
    maglets Member Posts: 2,576 Member
    #7
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    taraHK said:

    About to!
    I'm so glad you posted this because I was about to post something similar.

    I've been on XELOX (Xeloda plus oxaliplatin) -- finished 5 out of 6 cycles. My oncologist and I decided to stop the oxaliplatin (getting too toxic for me) and continue with just xeloda. He is saying 6 months but I have a feeling he is thinking of longer term/maintenance for me, if the side effects are manageable.

    So I've already been on the xeloda 5 cycles (twice a day for 2 weeks, then1 week off). I think I can separate out the side effects from xeloda versus oxaliplatin, since I've been on oxaliplatin before (with other drugs).

    So far, my side effects have been pretty minimal. Mild fatigue, ?mild nausea, bit of stomach cramping. I've had a bit of peeling/blisters on my feet (and dry, sore hands) but not at all bad so far.

    I'd love to stay in touch with you (all) about long-term xeloda. This is great timing for me.....

    Good luck to all!

    Love,
    Tara

    so nervous
    i am so ahppy to read this thread and know you are there. I am slated to start the oxalyplatin and xeloda in two weeks for a planned total of 6 months. I am so scared of the oxy after reading about it! I have done 8 months of xeloda so i kindof know what to expect with it. I had such a hard time with 5fu...almost like an allergic reaction ...skin on face and whole digestive system kept peeling off.....I think I am just worried that I will react to the oxy in the same way.
    Anyway I am so glad to know you are all there....
    Thanks
    Mags
  • taraHK
    taraHK Member Posts: 1,952 Member
    #8
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    maglets said:

    so nervous
    i am so ahppy to read this thread and know you are there. I am slated to start the oxalyplatin and xeloda in two weeks for a planned total of 6 months. I am so scared of the oxy after reading about it! I have done 8 months of xeloda so i kindof know what to expect with it. I had such a hard time with 5fu...almost like an allergic reaction ...skin on face and whole digestive system kept peeling off.....I think I am just worried that I will react to the oxy in the same way.
    Anyway I am so glad to know you are all there....
    Thanks
    Mags

    oxy
    I've been on oxy three times (first time 12 cycles, second time 11 cycles, third time 5 cycles) so I am happy to answer any questions you have about that. It does have some strange and unpleasant side effects, but it is "do-able" -- and I was able to maintain a pretty normal life throughout. I am wishing you all the best with it.

    Tara

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