Maintenance Chemo - Avastin only!!!

jasminsaba
jasminsaba Member Posts: 157 Member
in Colorectal Cancer #1
Hi there everyone - I hope all is well.

Probably getting ahead of myself here a bit, but since the topic of maintenance chemo came up during mom's last visit (I brought it up), I thought I'd start researching in preparation.

I brought up maintenance chemo and the doc suggested doing either Xeloda, Xeloda + Avastin, or Avastin alone as maintenance.

My questions are:

- Can you share your experiences with maintenance chemo and provide feedback as to what you found effective/practical?
- How long does maintenance treatment usually last? Indefinitely?

Thanks in advance, and I hope everyone has a great Thanksgiving holiday - I have much to be grateful this year.

Comments

  • here4lfe
    here4lfe Member Posts: 306 Member
    #2
    Maintenance did not work
    For my wife. She did 6 months of Xeloda only after finishing FOLFOX and having liver resected. Lesions showed up while she was on Xeloda, the rising CEA told the story, so it didn't work by itself for her.

    Best
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #3
    You may want to read this about Avastin
    From WebMD.com How Avastin Works. According to this article, Avastin alone is not effective.

    When I was dx in 2004, Avastin just came out. I started taking it one month into my FOLFOX chemo protocol so I only took Avastin for 5 out of my 6 months of chemo prior to my surgery. It did exactly what it was supposed to do, it starved the tumor on my hepatic artery and it shrunk which made me operable. Everything has risks, you have to weigh them versus the potential benefits then hope it works like planned.
    -p
  • pscott1
    pscott1 Member Posts: 207 Member
    #4
    Hi Jasmine,
    I am on maintenance chemo, Avastin only right now. I did 7 treatments of Folfox w/Avastin and am now coming up on my 5th of 8 treatments of Avastin alone. My tumor marker was at 1.3 at my 7th treatment of Folfox and has remained between 1.3 and 1.5 as of my last treatment. I had an MRI in late September and my lesions are shrinking; my Nurse Practitioner told me the chemo is killing them in fact. I have another MRI scheduled for December 20 so we'll see. She said that my disease is stable and if my CEA remains as is, within the normal range (0-5.0) then my Onc may take me off chemo for awhile completely and monitor with scans. I feel pretty good. Have a little problem with running to the bathroom off and on, some headaches and blood pressure running a little high but otherwise, I think I've done well with the maintenance chemo. It's working for me but I guess everyone is different. Good luck with whatever you decide!
  • jasminsaba
    jasminsaba Member Posts: 157 Member
    #5
    pscott1 said:

    Hi Jasmine,
    I am on maintenance chemo, Avastin only right now. I did 7 treatments of Folfox w/Avastin and am now coming up on my 5th of 8 treatments of Avastin alone. My tumor marker was at 1.3 at my 7th treatment of Folfox and has remained between 1.3 and 1.5 as of my last treatment. I had an MRI in late September and my lesions are shrinking; my Nurse Practitioner told me the chemo is killing them in fact. I have another MRI scheduled for December 20 so we'll see. She said that my disease is stable and if my CEA remains as is, within the normal range (0-5.0) then my Onc may take me off chemo for awhile completely and monitor with scans. I feel pretty good. Have a little problem with running to the bathroom off and on, some headaches and blood pressure running a little high but otherwise, I think I've done well with the maintenance chemo. It's working for me but I guess everyone is different. Good luck with whatever you decide!

    Quick follow on question for pscott1
    Hi there - thanks so much for your feedback. I have a couple of follow-on questions for you ... hope you don't mind:

    - do you currently have any active cancer (as per PET)?
    - have any of your liver lesions completely disappeared on chemo?
    - why was it recommended that you discontinue FOLFOX and only do maintenance chemo with Avastin?
    - are they planning to do a liver resection for you at some point?

    I am so happy to hear that Avastin has worked so well for you ... hoping that same will be true for mom. Thanks again for your help.
  • pscott1
    pscott1 Member Posts: 207 Member
    #6
    jasminsaba said:

    Quick follow on question for pscott1
    Hi there - thanks so much for your feedback. I have a couple of follow-on questions for you ... hope you don't mind:

    - do you currently have any active cancer (as per PET)?
    - have any of your liver lesions completely disappeared on chemo?
    - why was it recommended that you discontinue FOLFOX and only do maintenance chemo with Avastin?
    - are they planning to do a liver resection for you at some point?

    I am so happy to hear that Avastin has worked so well for you ... hoping that same will be true for mom. Thanks again for your help.

    Jasmin,
    I have mets in my liver....started as approx 30 lesions in both lobes, Nurse Practitioner's exact words 2 weeks ago was that the chemo is killing the lesions. I asked that at my next MRI on 12/20 that they count them. I was told that I probably would not be a candidate for liver resection but as you read on this board, there are others that have been told that and ended up getting a resection down the road. My Onc said that if you have 1 or 2 tumors and enough healthy liver to keep, then you'd be a candidate. My CEA was up to 337 at the beginning of my Folfox treatments and went down to 1.3 by the 7th treatment; he decided that it was a good time to switch to Avastin only since my disease was stable. Folfox was very toxic, as I'm sure many of these regimens are, so I was thankful that I didn't have to continue. I was tired of wearing the pump for 48 hours and taking Neulasta shots. Since I started Avastin only, all of my bloodwork has come back with really good numbers. I will keep you updated on how it turns out for me for the remaining treatments and scan. I'll be praying for your Mom as well; I don't know you and your Mom's ages but my oldest daughter is 29 and my main Caregiver and I am 52...it warms my heart to hear your concern for her. But remember to not worry the entire day away over her care; it breaks my heart when I think of how my daughter worries for me. Take care of yourself. I just keep telling myself that I'm going to be around to see my babies grow up, graduate, marry and have kids of their own. I have too much life to live to give up easy. My youngest is 11 and the middle one is 13. They are my heart as I'm sure you are your Mom's. Hang in there and have a wonderful Thanksgiving...enjoy every minute you 2 have together!

    Hugs,

    Pam
  • jasminsaba
    jasminsaba Member Posts: 157 Member
    #7
    pscott1 said:

    Jasmin,
    I have mets in my liver....started as approx 30 lesions in both lobes, Nurse Practitioner's exact words 2 weeks ago was that the chemo is killing the lesions. I asked that at my next MRI on 12/20 that they count them. I was told that I probably would not be a candidate for liver resection but as you read on this board, there are others that have been told that and ended up getting a resection down the road. My Onc said that if you have 1 or 2 tumors and enough healthy liver to keep, then you'd be a candidate. My CEA was up to 337 at the beginning of my Folfox treatments and went down to 1.3 by the 7th treatment; he decided that it was a good time to switch to Avastin only since my disease was stable. Folfox was very toxic, as I'm sure many of these regimens are, so I was thankful that I didn't have to continue. I was tired of wearing the pump for 48 hours and taking Neulasta shots. Since I started Avastin only, all of my bloodwork has come back with really good numbers. I will keep you updated on how it turns out for me for the remaining treatments and scan. I'll be praying for your Mom as well; I don't know you and your Mom's ages but my oldest daughter is 29 and my main Caregiver and I am 52...it warms my heart to hear your concern for her. But remember to not worry the entire day away over her care; it breaks my heart when I think of how my daughter worries for me. Take care of yourself. I just keep telling myself that I'm going to be around to see my babies grow up, graduate, marry and have kids of their own. I have too much life to live to give up easy. My youngest is 11 and the middle one is 13. They are my heart as I'm sure you are your Mom's. Hang in there and have a wonderful Thanksgiving...enjoy every minute you 2 have together!

    Hugs,

    Pam

    Thank you, Pam ...
    for sharing this information with me. My mom is the same age as you are ... she's 52 and I am 34. I'm an only child and she truly is my best friend under the sun.

    I'm very glad to hear that Avastin has worked so well for you - and will pray that you'll be able to continue on this successful path until a liver resection is possible. From what you've shared with me, it looks like you've responded very well to treatment and you're right, there are many here who have started out not eligible for surgery who later have been able to have surgery. That's my hope for you ... it's certainly tough to see someone you love so much go through cancer treatments but please know that as adult kids, we feel far more useful when we can be there for our parents when they need us (even a little). It's time that you focus on YOU ... at least for a little while ... and let us (the kids) take care of you.

    All the best - hope you had a wonderful thanksgiving ... many blessings to you.
  • eringray
    eringray Member Posts: 19
    #8
    i started xeloda and avastin
    i started xeloda and avastin after 15 treatments of folfiri and avastin. im on my third cycle and so far so good. my CEA is still in the normal range and i feel fantastic. my oncologist told me i can stay on the xeloda until it stops working. i wish your mother the best

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