Maintenance Chemo

vodkamarty
vodkamarty Member Posts: 17
edited March 2014 in Colorectal Cancer #1
Anyone have any feedback on Xeloda or Avastin at low dosage for long term maintenance?

Locally, onc's are mixed. Some feel it's reasonable, others feel Chemo should be held in reserve.

My wife is Stage IV NED, been through FOLFOX, then FOLFIRI/AVASTIN. Tolerated both fairly well (worked throughout).

Thanks in advance!

-Marty

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    Tell ya where I am with it.......
    I was dx with crc in 08 rectal....since then it metastatized to one spot on my lung . It was removed and there are no signs of any nodes involved, all margins are clear and they can't find it in any blood tests they are doing. So, my deal is this....do I do post op chemo if asked ? It wasn't supposed to come back this time but it did., even after 6 months of Folfox, and Folfox did a number on me...sick as a dog for 7 months...I am considering since my post op is metastatic but is no where to be found as of now, to wonder if post op chemo for me is the best option and give me another 6 months of feeling like chit or wait to see if it does in fact pop up somewhere and then try and treat aggressively.....I do though know what is at stake and have wrapped my head around my situation...Its a quantity vs quality decision here for me... I would rather have 2 great years than 5 not so good, but thats just me...I know in my heart where I am going after death which is only my opinion (not to be debated)and I do intend on fighting this disease but with a wider grander scheme of things in mind...and not with my head in a tizzy or a cloud but with understanding from my point of view as well as the benefit of my family as well..

    Love and Hope to you both....Buzz
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #3
    Maintenance Chemo
    Hi -

    My onc doesn't use that term, but I am on the "Avastin forever" plan. See my signature for details.

    Betsy

    diag. Stage IV, 5/05, liver met
    lap sigmoid colectomy, 6/05
    6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
    11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
    6 cycles Xeloda + Avastin,
    NED (PET every 3 mo)
    Currently on Avastin only - 15+ months so far!
  • vodkamarty
    vodkamarty Member Posts: 17
    #4
    Buzzard said:

    Tell ya where I am with it.......
    I was dx with crc in 08 rectal....since then it metastatized to one spot on my lung . It was removed and there are no signs of any nodes involved, all margins are clear and they can't find it in any blood tests they are doing. So, my deal is this....do I do post op chemo if asked ? It wasn't supposed to come back this time but it did., even after 6 months of Folfox, and Folfox did a number on me...sick as a dog for 7 months...I am considering since my post op is metastatic but is no where to be found as of now, to wonder if post op chemo for me is the best option and give me another 6 months of feeling like chit or wait to see if it does in fact pop up somewhere and then try and treat aggressively.....I do though know what is at stake and have wrapped my head around my situation...Its a quantity vs quality decision here for me... I would rather have 2 great years than 5 not so good, but thats just me...I know in my heart where I am going after death which is only my opinion (not to be debated)and I do intend on fighting this disease but with a wider grander scheme of things in mind...and not with my head in a tizzy or a cloud but with understanding from my point of view as well as the benefit of my family as well..

    Love and Hope to you both....Buzz

    Maint. etc.
    Great response Buzz.

    All the best to you.

    VM
  • vodkamarty
    vodkamarty Member Posts: 17
    #5
    Betsydoglover said:

    Maintenance Chemo
    Hi -

    My onc doesn't use that term, but I am on the "Avastin forever" plan. See my signature for details.

    Betsy

    diag. Stage IV, 5/05, liver met
    lap sigmoid colectomy, 6/05
    6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
    11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
    6 cycles Xeloda + Avastin,
    NED (PET every 3 mo)
    Currently on Avastin only - 15+ months so far!

    Maint. etc.
    Betsy,

    Avastin forever. Has a mythical ring to it. Infused or pill? Dosage? How are you feeling?

    BTW. We're dog lovers too (who isn't). Everything from a Bullmastiff to Chihuahua (I know...but he's a sweet little guy).

    Thanks and all the best,

    VM
  • geotina
    geotina Member Posts: 2,111 Member
    #6
    Marty:
    My hubby is on something similar, 5Fu and Avastin. So far, so good, it is doing its job. He has been on this mix since about February. I think George will be on something forever. He has only been on Folfox and had an excellent response so moved on to maintenance. If the cancer kicks up its ugly head then we will face that when it happens. Other than colon resection he has had no other surgery or radiation for his liver and lungs and continues to work full time and feels good except for some fatigue.

    Take care - Tina
  • dmdwins
    dmdwins Member Posts: 454 Member
    #7
    geotina said:

    Marty:
    My hubby is on something similar, 5Fu and Avastin. So far, so good, it is doing its job. He has been on this mix since about February. I think George will be on something forever. He has only been on Folfox and had an excellent response so moved on to maintenance. If the cancer kicks up its ugly head then we will face that when it happens. Other than colon resection he has had no other surgery or radiation for his liver and lungs and continues to work full time and feels good except for some fatigue.

    Take care - Tina

    My onc
    I too am Stage IV NED....I asked my onc about maintanence chemo. He is of the camp that if there is no evidence of disease we should not treat with toxic chemo.... and also he wants there to be options if we ever need it again in the future(I pray not of course).

    I wasn't sure how I felt about that at first....I wanted to keep those cancer cells dead forever but I am now almost 3 years out and cant imagine having been on chemo all that time...it has given my body time to recover and i am enjoying life.


    Just my onc and my thoughts.

    Smiles,
    Dawn
  • vodkamarty
    vodkamarty Member Posts: 17
    #8
    geotina said:

    Marty:
    My hubby is on something similar, 5Fu and Avastin. So far, so good, it is doing its job. He has been on this mix since about February. I think George will be on something forever. He has only been on Folfox and had an excellent response so moved on to maintenance. If the cancer kicks up its ugly head then we will face that when it happens. Other than colon resection he has had no other surgery or radiation for his liver and lungs and continues to work full time and feels good except for some fatigue.

    Take care - Tina

    Thanks
    Tina,

    Thanks for the feedback.

    All the best,

    VM
  • vodkamarty
    vodkamarty Member Posts: 17
    #9
    dmdwins said:

    My onc
    I too am Stage IV NED....I asked my onc about maintanence chemo. He is of the camp that if there is no evidence of disease we should not treat with toxic chemo.... and also he wants there to be options if we ever need it again in the future(I pray not of course).

    I wasn't sure how I felt about that at first....I wanted to keep those cancer cells dead forever but I am now almost 3 years out and cant imagine having been on chemo all that time...it has given my body time to recover and i am enjoying life.


    Just my onc and my thoughts.

    Smiles,
    Dawn

    Maint. chemo
    Dawn,

    Appreciate your insight (and your onc's).

    I like the idea (?!) of maint. But I'm not the one who has to take it. Guy thing. Attack, attack!

    Best of luck and good health,

    Marty
  • Eve1
    Eve1 Member Posts: 9
    #10
    vodkamarty said:

    Thanks
    Tina,

    Thanks for the feedback.

    All the best,

    VM

    Maintenance chemo
    I was diagnosed with st-4 in Nov of 08. I had 2 surgeries for debulking and a colon resection and had traditional chemo for 6 months. At that time I was NED and went on 5FU and Advastin as a mainenance chemo.After 10 months they found a soft tissue mass on my abdominal wall and I had robotic surgery to remove it. After that we decided to do the Hipec Surgery and they found more cancer on my small bowel which they removed with 2 more bowel resections. I am a very agressive person where this cancer is concerned. My onc believes that we don't have to get rid of the cancer, we just have to stop it from growing and we can live for many years with cancer. Good luck with whatever you decide to do. I am now on Campistar and Erbitux. Eve
  • taraHK
    taraHK Member Posts: 1,952 Member
    #11
    good question
    It's a very good question -- an interesting an important debate. I respect both medical views (ie oncologists have different opinions on this) and also of course respect each survivor's right to make the decision that is right for them.

    For what it is worth, I was on Xeloda (pill) only as maintainence chemo -- for about 6 mos. Then I stopped. I have since had a relapse and I am currently on Xeliri + Avastin. If and when I finish this, I will almost certainly be going on maintainence Xeloda again.

    Xeloda is OK for me for long-term. The advantages are it's a pill, no hospital visits/drip. I find the side effects overall pretty manageable. Disadvantages are I do suffer from hand-foot syndrome. Not too bad (I can still walk, type at computer etc). But, it does mean I can't hike, walk long distances -- so there are some quality of life decisions. And those ain't minor. I'll be weighing it all up -- and reserving the right to change my mind!

    Love,
    Tara
  • vodkamarty
    vodkamarty Member Posts: 17
    #12
    Eve1 said:

    Maintenance chemo
    I was diagnosed with st-4 in Nov of 08. I had 2 surgeries for debulking and a colon resection and had traditional chemo for 6 months. At that time I was NED and went on 5FU and Advastin as a mainenance chemo.After 10 months they found a soft tissue mass on my abdominal wall and I had robotic surgery to remove it. After that we decided to do the Hipec Surgery and they found more cancer on my small bowel which they removed with 2 more bowel resections. I am a very agressive person where this cancer is concerned. My onc believes that we don't have to get rid of the cancer, we just have to stop it from growing and we can live for many years with cancer. Good luck with whatever you decide to do. I am now on Campistar and Erbitux. Eve

    Maint. chemo (cont.)
    Eve,

    Thanks for the feedback. How tough was the Hipec proceedure?

    I'm with you- aggressive while trying to maintain good quality. Time is our friend.

    Best of luck,

    Marty
  • vodkamarty
    vodkamarty Member Posts: 17
    #13
    taraHK said:

    good question
    It's a very good question -- an interesting an important debate. I respect both medical views (ie oncologists have different opinions on this) and also of course respect each survivor's right to make the decision that is right for them.

    For what it is worth, I was on Xeloda (pill) only as maintainence chemo -- for about 6 mos. Then I stopped. I have since had a relapse and I am currently on Xeliri + Avastin. If and when I finish this, I will almost certainly be going on maintainence Xeloda again.

    Xeloda is OK for me for long-term. The advantages are it's a pill, no hospital visits/drip. I find the side effects overall pretty manageable. Disadvantages are I do suffer from hand-foot syndrome. Not too bad (I can still walk, type at computer etc). But, it does mean I can't hike, walk long distances -- so there are some quality of life decisions. And those ain't minor. I'll be weighing it all up -- and reserving the right to change my mind!

    Love,
    Tara

    Maint. chemo (cont.)
    Frannie had similar reaction from Oxy (most of which have reversed) and that was the only thing she complained about (tolerated everything else well- worked mostly full-time during both bouts of chemo).

    What has your onc to say about lower dosages or breaks between (to lessen side-efects).

    Best to 'ya,

    Marty

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