Calling all people who are on maintenance with Avastin

jmaddox915
jmaddox915 Member Posts: 80 Member
edited March 2014 in Colorectal Cancer #1
Hi,

I have 5 more treatments on Folfox and 5FU remaining. So far I am responding well, considering I am dx as Stage IV.

My doctor told me today that after these treatments, we will do a follow-up CT scan and I will more than likely go on "maintenance" with Avastin.

Can anyone doing this now give me an idea of how frequent you have to do this and what if any side effects? I have read there are few side effects but I figured people actually doing it would be my best source of information.

Thank you!

Comments

  • Lawlak
    Lawlak Member Posts: 21
    #2
    Hello,
    I just came off of
    Hello,

    I just came off of maintenance with Avastin and Xeloda and have had two different cycles of radiation, and more rounds of folfox and folfuri+Avastin than I can count. I have been fighting the monster for the past five years and went stage 4 2.5 years ago. I guess you could say I'm pretty experienced. Probably the easiest chemo that I have had is the Avastin and Xeloda. My doctor at MD Anderson told me that he would not give me just the Avastin without chemo because it is not effective without the chemo. If your doctor is telling you that you can have Avastin only you might consider getting a second opinion. The side effects from Avastin are pretty manageable and included nose bleeds and elevated blood pressure that was treated with medication and some general tiredness that went away after a few days. It also effected my breathing a little but not that much. That was about it for me. The Folfox and 5FU was much harder on me than the Avastin and Xeloda. I actually prefer the 5FU pump instead of the Xeloda because the pump only last 3 days and the Xeloda cycles were for 2 weeks on and 1 week off. Let me restate that, I hate the pump less than I hate the Xeloda! Hope this helps a little bit. Good luck in your journey.

    Tony
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #3
    Avastin only
    I am currently on Avastin only. As far as side effects go, I have none. We have no idea if this is helping and no idea when to stop. For now, I do it every 3 weeks - a 30 minute infusion plus blood work and a bit of waiting around.

    My biggest concern is that I am not sure I will dare to stop it - there are no stopping criteria in my case since I have no evidence of disease. Avastin only, following chemo, is sort of "in vogue" now, according to my oncologist.

    Betsy
    diagnosed Stage IV, 5/05, liver met
    sigmoid resection, 6/05
    6 cycles Xeloda/oxaliplatin/Avastin - 7/05-12/05 - NED after 2 cycles
    tiny lung nodule shows up 11/08 - removed via VATS 4/09
    NED since surgery and based on 2 PET and CT scans
    6 cycles Xeloda + Avastin (5/09 - 9/09)
    Continuing on Avastin only...........
  • geotina
    geotina Member Posts: 2,111 Member
    #4
    Maintenance
    My husband responded well to treatment is just like you, just completed the whole Folfox thing and 2 weeks ago started on 5FU and Leucovin (sp)every week adding Avastin every other week. Infusion takes about 1 hour to 1 1/2 hours. This will go on for a while and we see the onc in January. So far so good, gets his treatment early in the morning and goes on into work. He hasn't complained of any different side effects so far. Good Luck - Tina
  • KATE58
    KATE58 Member Posts: 299
    #5
    Betsydoglover said:

    Avastin only
    I am currently on Avastin only. As far as side effects go, I have none. We have no idea if this is helping and no idea when to stop. For now, I do it every 3 weeks - a 30 minute infusion plus blood work and a bit of waiting around.

    My biggest concern is that I am not sure I will dare to stop it - there are no stopping criteria in my case since I have no evidence of disease. Avastin only, following chemo, is sort of "in vogue" now, according to my oncologist.

    Betsy
    diagnosed Stage IV, 5/05, liver met
    sigmoid resection, 6/05
    6 cycles Xeloda/oxaliplatin/Avastin - 7/05-12/05 - NED after 2 cycles
    tiny lung nodule shows up 11/08 - removed via VATS 4/09
    NED since surgery and based on 2 PET and CT scans
    6 cycles Xeloda + Avastin (5/09 - 9/09)
    Continuing on Avastin only...........

    Iam stage IV AND I WAS ON
    Iam stage IV AND I WAS ON AVASTIN ALONE FOR FOUR MONTHS AFTER A COURSE OF FOLFOX WITH AVASTIN .I RECEIVED IT EVERY OTHER WEEK- NO SIDE EFFECTS, EXCEPT YOU HAVE TO BE CAREFUL NOT TO CUT YOURSELF BECAUSE YOU WILL BLEED EASY- USE AN ELECTRIC RAZOR -NO BLADES-YOU MAY BRUISE EASIER-NO DENTAL WORK OR ANY OTHER PROCEEDURE UNTILL 2 WEEKS AFTER YOU FINISH.

    I HAD IT WITH FOLFOX AND AFTER THE TUMOURS WERE GONE THEY CONTINUED THE AVASTIN ALONE JUST TO MAKE SURE IF THERE WERE ANY MICROSCOPIC BITS LEFT THEY COULD NOT FEED AND WOULD STARVE TO DEATH.

    AVASTIN IS AN ANTIANGIOGENISIS-MEANING IT SEEKS OUT AND DESTROYS ANY NEW BLOOD VESSELS TRYING TO GROW-TUMOURS FEED BY PUTTING OUT THEIR OWN BLOOD VESSELS AND SENDING THEM INTO THE BLOOD VESSELS OF NEARBY ORGANS AND TISSUE.THE AVASTIN FINDS THESE AND CUTS THEM OFF BEFORE THAN CAN ATTACH AND FEED-HENCE,THE TUMOURS 'STARVE' TO DEATH. NO FOOD ,NO GROW, DEATH!!!!
    GOOD LUCK TO YOU
    GOD BLESS
    KATE
  • KATE58
    KATE58 Member Posts: 299
    #6
    Lawlak said:

    Hello,
    I just came off of
    Hello,

    I just came off of maintenance with Avastin and Xeloda and have had two different cycles of radiation, and more rounds of folfox and folfuri+Avastin than I can count. I have been fighting the monster for the past five years and went stage 4 2.5 years ago. I guess you could say I'm pretty experienced. Probably the easiest chemo that I have had is the Avastin and Xeloda. My doctor at MD Anderson told me that he would not give me just the Avastin without chemo because it is not effective without the chemo. If your doctor is telling you that you can have Avastin only you might consider getting a second opinion. The side effects from Avastin are pretty manageable and included nose bleeds and elevated blood pressure that was treated with medication and some general tiredness that went away after a few days. It also effected my breathing a little but not that much. That was about it for me. The Folfox and 5FU was much harder on me than the Avastin and Xeloda. I actually prefer the 5FU pump instead of the Xeloda because the pump only last 3 days and the Xeloda cycles were for 2 weeks on and 1 week off. Let me restate that, I hate the pump less than I hate the Xeloda! Hope this helps a little bit. Good luck in your journey.

    Tony

    the real reason they won't
    the real reason they won't give avastin alone is most insurance won't pay for it if it's not given with chemo.my doctors got around that by giving me an 'iv push' (JUST A SYRING FULL)
    oF 5FU.RIGHT, It won't work alone on ACTIVE ESTABLISHED TUMOURS,BUT IT'S THE BOMB FOR KEEPING THEM FROM GROWING BACK! read my explanation below.
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #7
    geotina said:

    Maintenance
    My husband responded well to treatment is just like you, just completed the whole Folfox thing and 2 weeks ago started on 5FU and Leucovin (sp)every week adding Avastin every other week. Infusion takes about 1 hour to 1 1/2 hours. This will go on for a while and we see the onc in January. So far so good, gets his treatment early in the morning and goes on into work. He hasn't complained of any different side effects so far. Good Luck - Tina

    Thank you for all for your
    Thank you for all for your responses. Right for the most I think I am pretty lucky. When I was dx, the PET scanned showed a small spot on my liver about the size of a quarter, some involvement in my lympy nodes in abdomen and lungs.

    After 5 rounds of Folfox6 and 5FU, we did a CT scan in October. It showed the spot on the liver is pretty much disappeared and my abdomen is doing well. However my lungs showed no improvement so she sent me in for a lung biopsy to be sure on Nov 20th. Thank the Lord it came back as something else, sarcoidosis instead of cancer. Sarcoidodis is something I can live with and probably have been for a while. So far, no symptoms of sarcoidosis so it is in "remission".

    After my vist with my oncologist yesterday, she wants me to finish out my remaining 5 chemo treatments and then another CT scan. If it comes back well, she wants to start Avastin as maintenance. Her goal is get me to NED and hopefully we can keep me that way indefinitely or at least until new technology and treatments are invented.

    My worries sometimes is how frequently people in our situation have a recurrence somewhere else. When I get these thoughts, I usually say a quick prayer and ask the Lord to help me focus on today only.

    Thank you all again.

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