Avastin

Dyanclark
Dyanclark Member Posts: 296
in Colorectal Cancer #1
My husband stage 2 in 2008 did surgery & Radiation all good until 2011. Then in 2011 CEA started going up and peaked at 46. This year he did Avastin & Oxi for 5 months. Had surgery Aug 10, 2012 for Colostomy due to three blockages 2 from radiation and 1 from dead tumor after surgery CEA 1.9. Now it is going up again it is at 6.3, Had Pet Scan Monday will get results on Tues. We are calling Dr. to make sure they start him back on Avastin asap as it was working.
Anyone have some advise for us.

Comments

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #2
    Just my thoughts
    After my surgery to remove tumors, the onc and others in the "business" thought I might actually be cured of this cancer cr@p. after surgery I was put on Xeloda and Avastin, after a couple of months of Xeloda I could no longer afford the co-pay and just went with the Avastin. For a year and a half my CEA and scans showed no cancer, my onc and I would have conversations where he wanted to stop the Avastin and I reasoned with him that I felt safer continuing with Avastin and we would do so. But then I worried that I needed a colonoscopy that I was supposed to have had over 6 months previously, and wanted to get a couple of root canals done, so ended up getting off of the Avastin to do so. I told my onc after a couple of months that I had actually felt better health wise while I was on the Avastin, but now felt "blah" and wasn't that strange that I felt better on Avastin then off.
    Before I could get the colonoscopy (waiting on appointment time) I had a heart attack (the widow maker one) and got a stent inserted, then I was on blood thinners and still couldn't get the colonoscopy or put back on Avastin. In the end 7 months passed with no Avastin and no chemo and with my CEA starting to rise, after ct scans PET scans, my cancer was back every where and a few more to boot.
    I am now back on Oxy, Xeloda and Avastin. What Avastin did for me I believe (and this is just my belief from the circumstances) is that the Avastin kept the remaining tumor cells stagnate (they couldn't grow due to Avastin's "smothering" effect) but I believe that if I had of stayed on the Xeloda the 6 months that my onc wanted me to stay on I would not be in this position today. I also think if I had stayed on Avastin, the tumors would have been kept at their low level and would not have increased.
    Which in the end is, the Avastin kept the tumors from growing but nothing more (and hey, I'm happy with that, but it means a lifetime of Avastin) but I think (and this is only my opinion) that the Xeloda in combination with the Avastin would have finished wiping out those microscopic tumors if I had stayed the course.
    So what I'm saying in a long rambling way is that I believe the Avastin helps stunt the growth, but Xeloda in combination helps shrink and kill the growth,
    Winter Marie
  • pog451
    pog451 Member Posts: 20
    #3
    herdizziness said:

    Just my thoughts
    After my surgery to remove tumors, the onc and others in the "business" thought I might actually be cured of this cancer cr@p. after surgery I was put on Xeloda and Avastin, after a couple of months of Xeloda I could no longer afford the co-pay and just went with the Avastin. For a year and a half my CEA and scans showed no cancer, my onc and I would have conversations where he wanted to stop the Avastin and I reasoned with him that I felt safer continuing with Avastin and we would do so. But then I worried that I needed a colonoscopy that I was supposed to have had over 6 months previously, and wanted to get a couple of root canals done, so ended up getting off of the Avastin to do so. I told my onc after a couple of months that I had actually felt better health wise while I was on the Avastin, but now felt "blah" and wasn't that strange that I felt better on Avastin then off.
    Before I could get the colonoscopy (waiting on appointment time) I had a heart attack (the widow maker one) and got a stent inserted, then I was on blood thinners and still couldn't get the colonoscopy or put back on Avastin. In the end 7 months passed with no Avastin and no chemo and with my CEA starting to rise, after ct scans PET scans, my cancer was back every where and a few more to boot.
    I am now back on Oxy, Xeloda and Avastin. What Avastin did for me I believe (and this is just my belief from the circumstances) is that the Avastin kept the remaining tumor cells stagnate (they couldn't grow due to Avastin's "smothering" effect) but I believe that if I had of stayed on the Xeloda the 6 months that my onc wanted me to stay on I would not be in this position today. I also think if I had stayed on Avastin, the tumors would have been kept at their low level and would not have increased.
    Which in the end is, the Avastin kept the tumors from growing but nothing more (and hey, I'm happy with that, but it means a lifetime of Avastin) but I think (and this is only my opinion) that the Xeloda in combination with the Avastin would have finished wiping out those microscopic tumors if I had stayed the course.
    So what I'm saying in a long rambling way is that I believe the Avastin helps stunt the growth, but Xeloda in combination helps shrink and kill the growth,
    Winter Marie

    Avastin maintenance
    Hey Winter Marie,

    Your belief may well be supported by some recent studies:

    http://member.ubmmedica.com/verify.php?referrer=http://www.cancernetwork.com/colorectal-cancer/content/article/10165/2107224&parentreferrer=http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=36640

    This suggests that Avastin is indeed effective as a maintenance treatment even without a Folfox/Folfiri backbone.
  • steved
    steved Member Posts: 834 Member
    #4
    Scary times
    These days of waiting for results are some of the worst and your urge to get back on treatment is unsderstandable and yes avast in, with or without a cytotoxic seems sensible. However, perhaps waiting on the pet may be sensible. A few days (even if they are the longest days ever) don't matter in terms of any tumour. But it may tell you what treatment is best. In truth if there is recurrence in some area eg liver or lung then wider talks about what is best are needed eg RCA, surgery etc. starting avastin now could actually delay those options.

    Perhaps a few days of anxious patience is best. My thoughts are with you and please let us know how things go.

    Steve
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #5
    steved said:

    Scary times
    These days of waiting for results are some of the worst and your urge to get back on treatment is unsderstandable and yes avast in, with or without a cytotoxic seems sensible. However, perhaps waiting on the pet may be sensible. A few days (even if they are the longest days ever) don't matter in terms of any tumour. But it may tell you what treatment is best. In truth if there is recurrence in some area eg liver or lung then wider talks about what is best are needed eg RCA, surgery etc. starting avastin now could actually delay those options.

    Perhaps a few days of anxious patience is best. My thoughts are with you and please let us know how things go.

    Steve

    I had folfiri treatment
    I had folfiri treatment yesterday, in Ontario seems the won't put you on avastin unless it's in combo. with folfiri. Oncologist has put the paperwork forward for me to go on avastin, has to be approved by cancer care ontario, so far I've had two doses of chemo. and still no avastin...they had hoped approval would have been there on Monday, but not yet....have to wait and see if I get it two weeks from now. In the past on chemo. I had minimal side effects, this dose yesterday had me pretty puckey, woke up in the middle of the night vomiting, never had that before, been popping anti-nausea drugs.
  • Dyanclark
    Dyanclark Member Posts: 296
    #6
    herdizziness said:

    Just my thoughts
    After my surgery to remove tumors, the onc and others in the "business" thought I might actually be cured of this cancer cr@p. after surgery I was put on Xeloda and Avastin, after a couple of months of Xeloda I could no longer afford the co-pay and just went with the Avastin. For a year and a half my CEA and scans showed no cancer, my onc and I would have conversations where he wanted to stop the Avastin and I reasoned with him that I felt safer continuing with Avastin and we would do so. But then I worried that I needed a colonoscopy that I was supposed to have had over 6 months previously, and wanted to get a couple of root canals done, so ended up getting off of the Avastin to do so. I told my onc after a couple of months that I had actually felt better health wise while I was on the Avastin, but now felt "blah" and wasn't that strange that I felt better on Avastin then off.
    Before I could get the colonoscopy (waiting on appointment time) I had a heart attack (the widow maker one) and got a stent inserted, then I was on blood thinners and still couldn't get the colonoscopy or put back on Avastin. In the end 7 months passed with no Avastin and no chemo and with my CEA starting to rise, after ct scans PET scans, my cancer was back every where and a few more to boot.
    I am now back on Oxy, Xeloda and Avastin. What Avastin did for me I believe (and this is just my belief from the circumstances) is that the Avastin kept the remaining tumor cells stagnate (they couldn't grow due to Avastin's "smothering" effect) but I believe that if I had of stayed on the Xeloda the 6 months that my onc wanted me to stay on I would not be in this position today. I also think if I had stayed on Avastin, the tumors would have been kept at their low level and would not have increased.
    Which in the end is, the Avastin kept the tumors from growing but nothing more (and hey, I'm happy with that, but it means a lifetime of Avastin) but I think (and this is only my opinion) that the Xeloda in combination with the Avastin would have finished wiping out those microscopic tumors if I had stayed the course.
    So what I'm saying in a long rambling way is that I believe the Avastin helps stunt the growth, but Xeloda in combination helps shrink and kill the growth,
    Winter Marie

    Avastin
    Thank you so much for your story. I think you are so right,I have heard that people eventually get off Avastin and are in remission. I also know many people who dont make it know what they do. We have a neighbor who had colorectol cancer and it spread to his liver. He had surgery for the colon and 2/3 of liver removed, and he has been 8 years cancer free. I guess everyone is different.
  • joemetz
    joemetz Member Posts: 493
    #7
    herdizziness said:

    Just my thoughts
    After my surgery to remove tumors, the onc and others in the "business" thought I might actually be cured of this cancer cr@p. after surgery I was put on Xeloda and Avastin, after a couple of months of Xeloda I could no longer afford the co-pay and just went with the Avastin. For a year and a half my CEA and scans showed no cancer, my onc and I would have conversations where he wanted to stop the Avastin and I reasoned with him that I felt safer continuing with Avastin and we would do so. But then I worried that I needed a colonoscopy that I was supposed to have had over 6 months previously, and wanted to get a couple of root canals done, so ended up getting off of the Avastin to do so. I told my onc after a couple of months that I had actually felt better health wise while I was on the Avastin, but now felt "blah" and wasn't that strange that I felt better on Avastin then off.
    Before I could get the colonoscopy (waiting on appointment time) I had a heart attack (the widow maker one) and got a stent inserted, then I was on blood thinners and still couldn't get the colonoscopy or put back on Avastin. In the end 7 months passed with no Avastin and no chemo and with my CEA starting to rise, after ct scans PET scans, my cancer was back every where and a few more to boot.
    I am now back on Oxy, Xeloda and Avastin. What Avastin did for me I believe (and this is just my belief from the circumstances) is that the Avastin kept the remaining tumor cells stagnate (they couldn't grow due to Avastin's "smothering" effect) but I believe that if I had of stayed on the Xeloda the 6 months that my onc wanted me to stay on I would not be in this position today. I also think if I had stayed on Avastin, the tumors would have been kept at their low level and would not have increased.
    Which in the end is, the Avastin kept the tumors from growing but nothing more (and hey, I'm happy with that, but it means a lifetime of Avastin) but I think (and this is only my opinion) that the Xeloda in combination with the Avastin would have finished wiping out those microscopic tumors if I had stayed the course.
    So what I'm saying in a long rambling way is that I believe the Avastin helps stunt the growth, but Xeloda in combination helps shrink and kill the growth,
    Winter Marie

    thank you winter marie
    Winter Marie

    thank you SO much for sharing this post.

    Today ends week 7 of Xeloda and Avastin.

    and, like you said... I feel better today than I've felt in over 5 years (1 year in the cancer battle) four years "thinking i was healthy".

    Your positive post provides encouragement for me and many others.

    thank you!

    you're in my prayers and thoughts today and always.

    cheers

    joe

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