It seems my previous question was difficult to understand , here it goes again!.

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Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #22
    Betsydoglover said:

    NED from chemo only
    Hi Pepe - since you mentioned me, I thought I would elaborate. I was diagnosed in 5/05 with sigmoid tumor and liver met. My colon resection was done in June '05 and then I did 6 cycles of Xeloda/oxaliplatin/Avastin. Based upon PET and CT scans I was NED after 3 cycles. I stopped chemo the first week of December 2005 and remained NED based on scans every 3 months until Nov. 2008 when a tiny lung nodule showed up. So, I remained NED for 35 months after stopping chemo.

    My liver is still clear as of last week. The lung nodule was removed via VATS in 4/09 and then I did Xeloda plus Avastin for 6 cycles, continuing Avastin up until 2 weeks ago. Now I am back in watch and wait mode - will be scanning and doing blood work every 3 months.

    I guess what I am saying is that it can happen that chemo alone eliminates liver mets, but that isn't the norm.

    Take care,
    Betsy

    Betsy , Randy that's what I wanted to know, seems to be NED
    for a reasonable time is still possible! LOL. And it was the only meaning of my question Thank you both two , you been very kind !
    congratulations to both and will pray for you and your excellent results!.
    Hugs!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #23
    Betsydoglover said:

    NED from chemo only
    Hi Pepe - since you mentioned me, I thought I would elaborate. I was diagnosed in 5/05 with sigmoid tumor and liver met. My colon resection was done in June '05 and then I did 6 cycles of Xeloda/oxaliplatin/Avastin. Based upon PET and CT scans I was NED after 3 cycles. I stopped chemo the first week of December 2005 and remained NED based on scans every 3 months until Nov. 2008 when a tiny lung nodule showed up. So, I remained NED for 35 months after stopping chemo.

    My liver is still clear as of last week. The lung nodule was removed via VATS in 4/09 and then I did Xeloda plus Avastin for 6 cycles, continuing Avastin up until 2 weeks ago. Now I am back in watch and wait mode - will be scanning and doing blood work every 3 months.

    I guess what I am saying is that it can happen that chemo alone eliminates liver mets, but that isn't the norm.

    Take care,
    Betsy

    Betsy I understand you been 26 months on Avastin!
    Manageable? .
    Hugs And tks in advance!
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #24
    pepebcn said:

    Betsy I understand you been 26 months on Avastin!
    Manageable? .
    Hugs And tks in advance!

    2 years on Avastin
    Hi - I've been on Avastin since June 1, 2009. So, two years. We've just discontinued it. I had a tiny small intestinal bleed which we are running down now - may well have been caused by my arthritis med, but Avastin is also a possibility, so until we figure it out, I'm on a break.

    I'm a little nervous to be doing nothing, but I've been there before and so can go there again.

    Avastin, by the way, was very tolerable for me. Increased nasal congestion, but other than that no side effects.

    Take care,
    Betsy
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #25
    Betsydoglover said:

    2 years on Avastin
    Hi - I've been on Avastin since June 1, 2009. So, two years. We've just discontinued it. I had a tiny small intestinal bleed which we are running down now - may well have been caused by my arthritis med, but Avastin is also a possibility, so until we figure it out, I'm on a break.

    I'm a little nervous to be doing nothing, but I've been there before and so can go there again.

    Avastin, by the way, was very tolerable for me. Increased nasal congestion, but other than that no side effects.

    Take care,
    Betsy

    Thks Betsy very kind of you!
    Hugs!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #26
    pepebcn said:

    Thks Betsy very kind of you!
    Hugs!

    How do they administer the
    How do they administer the Avastin, infusion?? How often do you have to go to get it?? Thanks Leena.
  • Randy33
    Randy33 Member Posts: 69 Member
    #27
    janie1 said:

    Randy
    That's some really good news. Do u mind sharing which supplements (and how much) you take? Did you take those same supplements while on chemo, or did you really amp up the diet and supplements after chemo? (still trying to figure out what to take now while on folfox) and what to do after. onc is no help. Going to naturopath next week, but i still like to compare what people are doing. Thanks for your time and sharing!

    Janie
    I did not take any supplements except for a multivitamin while on chemo. My doctor told me that exercise was the best thing to do so I did that. After chemo a friend gave me the "Anticncer" book and I based my diet on that. The supplements I take are:
    1. Resviratrol 100 mg/day-from a 60 Minutes story
    2. One regular asprin/day- NBC News story
    3. Two fish oil capsuls/day- Article in AARP magazine
    4. One Co-Q-10/day- Recomedation from this Board
    5. Vit. D3 - Recomendation from this Board
    6 One teaspoon of modified citrus pectin/day-Recomendation from this Board
    I keep my doctor informed on what I am doing and he is okay with it. He is amazed that my cancer has not returned yet. He never had anyone go over a year without a recurrance. He calls me his miracle man. I think that my exercise program is the most important part of my program. I excercise 3 hrs/day walking, yoga, weight lifting and running. Its been 2 1/2 years so far. My next scan is in July. I hope this helps.
    Randy
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #28
    Randy33 said:

    Janie
    I did not take any supplements except for a multivitamin while on chemo. My doctor told me that exercise was the best thing to do so I did that. After chemo a friend gave me the "Anticncer" book and I based my diet on that. The supplements I take are:
    1. Resviratrol 100 mg/day-from a 60 Minutes story
    2. One regular asprin/day- NBC News story
    3. Two fish oil capsuls/day- Article in AARP magazine
    4. One Co-Q-10/day- Recomedation from this Board
    5. Vit. D3 - Recomendation from this Board
    6 One teaspoon of modified citrus pectin/day-Recomendation from this Board
    I keep my doctor informed on what I am doing and he is okay with it. He is amazed that my cancer has not returned yet. He never had anyone go over a year without a recurrance. He calls me his miracle man. I think that my exercise program is the most important part of my program. I excercise 3 hrs/day walking, yoga, weight lifting and running. Its been 2 1/2 years so far. My next scan is in July. I hope this helps.
    Randy

    I saw at the health food
    I saw at the health food market Grapefruite Pectin, is this the same as modified fruit pectin, I also saw apple pectin.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #29
    smokeyjoe said:

    How do they administer the
    How do they administer the Avastin, infusion?? How often do you have to go to get it?? Thanks Leena.

    I get it every two weeks
    Avastin is IV just like almost all colon cancer chemo (other than Xeloda). It is technically not chemo, but is a monoclonal antibody (it binds up VEGF and inactivates it). It shuts down the process of tumors growing new blood vessels.

    I was on FOLFIRI and Avastin every two weeks since last September (for distant lymph node involvement only - no organ involvement). Things looked good the beginning of February so we dropped the Irinotecan, but kept the 5-FU and Avastin. I progressed again - more nodes involved. So we added Irinotecan back in the end of April, with quick results in dropping CEA. My last tx we dropped the 5-FU. I just got Irinotecan and Avastin. Hopefully this will keep things in control enough, so I don't have to deal with the 2 day pump, and can cut back on toxicity.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #30
    Not a long time for me
    It looked like chemo got rid of my distant lymph node mets, but some came back and I had spread to more nodes when we reduced chemo. I never got to go off of it since my progression...

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