irinotecan + avastin

luvmum
luvmum Member Posts: 457
Dear all,

My mum's oncologist will give her this regimen if she decided to have more chemo... I did ask him why not Folfiri, he said due to my mum's past history of severe diarrhea, he will not add 5-FU to the second line regimen.

Does anyone of you have this combination before? Will it be less effective compare to FOLFIRI?

Thanks a lot for your sharing, I really need this information. Have to decide whether to continue chemo or not.
Love Dora

Comments

  • John23
    John23 Member Posts: 2,122
    Dora -

    Re:
    "......My mum's oncologist will give her this regimen if she decided to have more chemo...
    .....Have to decide whether to continue chemo or not....."


    If you don't trust the oncologist to decide when chemo should not
    be administered, why continue to use that one?

    Many oncologists are now leaving the decision to continue
    chemical treatments up to the patient, when the oncologist
    feels the treatments are no longer useful or required.

    I guess the reasoning is that a lawsuit can be averted if the
    patient has a relapse after stopping the treatments at the
    physician's decision....(?)

    If the doc is suggesting that the treatments can be stopped,
    I would heed that suggestion. Allowing the fear of stopping
    to direct one into continuing, isn't in the best interests of
    good health.

    Recurrences happen with cancer regardless of continued
    treatment or not. The side effects of the carcinogenic chemicals
    can get worse over time, since the effects are cumulative.

    You should get another opinion from a different oncologist
    (or colorectal surgeon) that is not of the same group or organization,
    if you're that uneasy with making a decision.

    Stopping treatments does not mean there will be less chance
    of survival, any more than continuing treatment will provide
    continued cancer-free life.

    Good health to you both!

    John
  • johnnybegood
    johnnybegood Member Posts: 1,117
    John23 said:

    Dora -

    Re:
    "......My mum's oncologist will give her this regimen if she decided to have more chemo...
    .....Have to decide whether to continue chemo or not....."


    If you don't trust the oncologist to decide when chemo should not
    be administered, why continue to use that one?

    Many oncologists are now leaving the decision to continue
    chemical treatments up to the patient, when the oncologist
    feels the treatments are no longer useful or required.

    I guess the reasoning is that a lawsuit can be averted if the
    patient has a relapse after stopping the treatments at the
    physician's decision....(?)

    If the doc is suggesting that the treatments can be stopped,
    I would heed that suggestion. Allowing the fear of stopping
    to direct one into continuing, isn't in the best interests of
    good health.

    Recurrences happen with cancer regardless of continued
    treatment or not. The side effects of the carcinogenic chemicals
    can get worse over time, since the effects are cumulative.

    You should get another opinion from a different oncologist
    (or colorectal surgeon) that is not of the same group or organization,
    if you're that uneasy with making a decision.

    Stopping treatments does not mean there will be less chance
    of survival, any more than continuing treatment will provide
    continued cancer-free life.

    Good health to you both!

    John

    hi
    i am on that combo right now.i have not had any surgery yet on my liver or lung.this chemo cocktail has been good for me i have had 8 treatments and have only been sick for the last 2 treatments.mostly dizzy and stomach cramps.2 years ago i was on folfox and it about killed me so this combo i am on now has been better for me.good luck and Godbless...johnnybegood
  • pepebcn
    pepebcn Member Posts: 6,331

    hi
    i am on that combo right now.i have not had any surgery yet on my liver or lung.this chemo cocktail has been good for me i have had 8 treatments and have only been sick for the last 2 treatments.mostly dizzy and stomach cramps.2 years ago i was on folfox and it about killed me so this combo i am on now has been better for me.good luck and Godbless...johnnybegood

    sorry but understand wrong fofiri very similar to this
    Actually they are going to remove my 5 Fu next infusion as doc. says it's going to be easier and 5 Fu is the less effective of the 3 drugs!
    Praying for you both!
  • PhillieG
    PhillieG Member Posts: 4,866
    Hi Dora
    Like John said, your Mum could decide to stop chemo altogether. There are no guarantees in life and especially when it comes to cancer. What works for one person may or may not work for another person.

    That being said...I did the Avastin and Irinotecan (and also Erbitux with Irinotecan) and had very good success with it. When I was first DX, I had tumors in my liver that were shrunk by using Avastin. I have little doubt that without it I'd be here today. All I know is that it did starve the tumors and made me operable. In my situation, I was 46 at the time, had a 10 yr old and 4 yr old so was easy to decide my course of treatment. I wanted an aggressive treatment regiment and was prepared for the rough road ahead. I do not remember specifics of of the side effects but I do know that I kayaked for 81 consecutive days while on FOLFOX w/Avastin. That was then and this is now.
    If I were a lot older I do not know what I'd choose.

    Personally, if your Mum is a fighter and plans on being around for a while I'd say to go for it.
    Hugs
    -phil
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    I am on only Irinotecan and Avastin
    I did FOLFOX, thought we got it all, but then I progressed. I did FOLFIRI and got it back under control. Then I was on maintenance of 5-FU and Avastin, with no Irinotecan. I had progression. We added the Irinotecan back in, and things headed in the right direction again.

    I have a very hard time with 5-FU, both on FOLFOX and FOLFIRI. I asked why I should stay on it since I had progression on it. So we tried just Irinotecan and Avastin. My CEA has continued to drop after every treatment. And I tolerate the chemo much better. Not having that pump for 2 days is great, and speeds up recovery time. Instead of only getting 2-3 ok days before doing chemo again, I get a week.
  • idlehunters
    idlehunters Member Posts: 1,787

    I am on only Irinotecan and Avastin
    I did FOLFOX, thought we got it all, but then I progressed. I did FOLFIRI and got it back under control. Then I was on maintenance of 5-FU and Avastin, with no Irinotecan. I had progression. We added the Irinotecan back in, and things headed in the right direction again.

    I have a very hard time with 5-FU, both on FOLFOX and FOLFIRI. I asked why I should stay on it since I had progression on it. So we tried just Irinotecan and Avastin. My CEA has continued to drop after every treatment. And I tolerate the chemo much better. Not having that pump for 2 days is great, and speeds up recovery time. Instead of only getting 2-3 ok days before doing chemo again, I get a week.

    Irinotecan Only
    I am much like Kathryn...except now I am just on Irinotecan..no more Avastin. It is doing a fine job for me as well!

    Jennie
  • luvmum
    luvmum Member Posts: 457

    Irinotecan Only
    I am much like Kathryn...except now I am just on Irinotecan..no more Avastin. It is doing a fine job for me as well!

    Jennie

    Dear Jennie
    How about the hair loss problem? does that bother you?

    Thanks a lot!
    Dora
  • luvmum
    luvmum Member Posts: 457

    I am on only Irinotecan and Avastin
    I did FOLFOX, thought we got it all, but then I progressed. I did FOLFIRI and got it back under control. Then I was on maintenance of 5-FU and Avastin, with no Irinotecan. I had progression. We added the Irinotecan back in, and things headed in the right direction again.

    I have a very hard time with 5-FU, both on FOLFOX and FOLFIRI. I asked why I should stay on it since I had progression on it. So we tried just Irinotecan and Avastin. My CEA has continued to drop after every treatment. And I tolerate the chemo much better. Not having that pump for 2 days is great, and speeds up recovery time. Instead of only getting 2-3 ok days before doing chemo again, I get a week.

    Dear Kathryn
    do you mind if I ask if you are K-ras mutated? How did you manage the hair loss problem? My mum is scared of this part too...

    Thanks a lot for your reply.
    Best wishes, Dora
  • westie66
    westie66 Member Posts: 642
    luvmum said:

    Dear Kathryn
    do you mind if I ask if you are K-ras mutated? How did you manage the hair loss problem? My mum is scared of this part too...

    Thanks a lot for your reply.
    Best wishes, Dora

    5FU/Irenotecan/oxaliplatin
    Hi all: How interesting! I'm still on all three (finished treatment 5) and wonder which of the 3 is giving me the 5 days of extreme fatigue that starts about 3 days after the 5FU pump comes off. I know irenotecan is "famous" for severe diarrhea (and so is the 5FU). We'll see what my oncologist says after I get the results of a recent MRI (trying to get rid of nodules on the peritoneum and omentum). Re hair loss. My hair isn't falling out really but rather breaking off and leaving thin patches here and there. The texture of my hair has also changed. Right now it isn't looking too good! I just treat my hair carefully and use a leave-in conditioner (and remember to put a hair catcher into the shower!).
    Keep me posted on progress using irenotecan. I'm not sure what good progress is!
    Cheryl
  • idlehunters
    idlehunters Member Posts: 1,787
    luvmum said:

    Dear Jennie
    How about the hair loss problem? does that bother you?

    Thanks a lot!
    Dora

    Hair Loss....
    It kinda bothered me the first time around but I have had very long hair all of my life and then for it ALL tobe gone.... I felt very ugly.... now I don't care...because feel very ALIVE and with all the different wigs on the market I can be a different woman every day..... That does have advantages!

    Jennie
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    pepebcn said:

    sorry but understand wrong fofiri very similar to this
    Actually they are going to remove my 5 Fu next infusion as doc. says it's going to be easier and 5 Fu is the less effective of the 3 drugs!
    Praying for you both!

    Hope it works
    Hope it works for you as well as for me. I am happy to not have the pump or 5-FU anymore!
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    luvmum said:

    Dear Kathryn
    do you mind if I ask if you are K-ras mutated? How did you manage the hair loss problem? My mum is scared of this part too...

    Thanks a lot for your reply.
    Best wishes, Dora

    KRAS and hair
    I am mutant - I cannot use Erbitux or Vectibix.

    I know some people don't agree with me, and I'm going to probably get blasted for saying this, but I still don't understand how people can be so vain as to be really worried about losing their hair, when what is at stake is their LIFE! Men take this easier than women, as it is "accepted" for them to lose hair and go bald. But women can be so vain. I would GLADLY give up my hair forever to be cancer free and alive. But in my case, I give up my hair just to keep the cancer under control, and that is ok too. I'd rather live longer without hair, than not very long with it. The heat index here is over 100 for the week, so I certainly am much more comfortable without it anyway! And I save a lot of money on hair products and accessories!

    I admit, one of my very first worries I had when I found out I needed chemo was that I would lose my hair. I have had very long, very thick hair my entire life. Everyone always knew me by my hair - it was somewhet my "signature." It has never been short - by the time I was age 2, it was pretty long and always has been. So going from long thick hair to very thin hair, to no hair, was very drastic. But a knee-jerk reaction during the shock of finding colon cancer and immediate surgery with no time to process any of it, is different than looking at it once I was in treatment and really fighting for my life.

    Once I started chemo and dealt with all the other awful side effects, losing my hair was no big deal. It was odd, and took a little getting used to, but really it doesn't cause all the pain and misery of mouth sores, neuropathy, nausea, vomiting, diarrhea, chest pain, headaches, etc. My scalp sometimes itches, and often feels a bit sunburned, but that isn't a big deal.

    Not everyone loses their hair on Irinotecan. I had major thinning and lost 90% of my hair on FOLFOX. It grew back in last summer when I was off chemo. I had to cut it short because the long hair was thin and scraggly and the short hair was thick. And surprise! I look better with short hair anyway! I wouldn't have had the nerve to cut it short if I wasn't forced to do it. After the second tx of FOLFORI it was coming out by the handfuls. By the 4th tx I gave up on the "old man comb-over" and shaved it. When I went on maintenance last winter, it started growing back, and I had really nice short, soft, curly hair (my hair before was a lot courser). It came out slower this time, but after 6 tx, I had to shave my head again.

    I tried a wig and hated it. I do have several hats. I wear them sometimes, but not if I am too hot. I really don't care what someone else things about what I look like. People need to learn to be more accepting of appearances anyway - maybe my bald head will help someone see that I am no different bald than with my crazy long thick hair, and realize that hair, (or clothes, or make-up) don't make a person at all. In fact, my youngest son (age 16) now keeps his head shaved down to a #1 or #2 - even though some of his peers give him a very hard time for it. He is more comfortable that way, and knows that he is the same person no matter how much hair he keeps on his head. The exterior doesn't mean a lot, what is inside counts.
  • luvmum
    luvmum Member Posts: 457

    KRAS and hair
    I am mutant - I cannot use Erbitux or Vectibix.

    I know some people don't agree with me, and I'm going to probably get blasted for saying this, but I still don't understand how people can be so vain as to be really worried about losing their hair, when what is at stake is their LIFE! Men take this easier than women, as it is "accepted" for them to lose hair and go bald. But women can be so vain. I would GLADLY give up my hair forever to be cancer free and alive. But in my case, I give up my hair just to keep the cancer under control, and that is ok too. I'd rather live longer without hair, than not very long with it. The heat index here is over 100 for the week, so I certainly am much more comfortable without it anyway! And I save a lot of money on hair products and accessories!

    I admit, one of my very first worries I had when I found out I needed chemo was that I would lose my hair. I have had very long, very thick hair my entire life. Everyone always knew me by my hair - it was somewhet my "signature." It has never been short - by the time I was age 2, it was pretty long and always has been. So going from long thick hair to very thin hair, to no hair, was very drastic. But a knee-jerk reaction during the shock of finding colon cancer and immediate surgery with no time to process any of it, is different than looking at it once I was in treatment and really fighting for my life.

    Once I started chemo and dealt with all the other awful side effects, losing my hair was no big deal. It was odd, and took a little getting used to, but really it doesn't cause all the pain and misery of mouth sores, neuropathy, nausea, vomiting, diarrhea, chest pain, headaches, etc. My scalp sometimes itches, and often feels a bit sunburned, but that isn't a big deal.

    Not everyone loses their hair on Irinotecan. I had major thinning and lost 90% of my hair on FOLFOX. It grew back in last summer when I was off chemo. I had to cut it short because the long hair was thin and scraggly and the short hair was thick. And surprise! I look better with short hair anyway! I wouldn't have had the nerve to cut it short if I wasn't forced to do it. After the second tx of FOLFORI it was coming out by the handfuls. By the 4th tx I gave up on the "old man comb-over" and shaved it. When I went on maintenance last winter, it started growing back, and I had really nice short, soft, curly hair (my hair before was a lot courser). It came out slower this time, but after 6 tx, I had to shave my head again.

    I tried a wig and hated it. I do have several hats. I wear them sometimes, but not if I am too hot. I really don't care what someone else things about what I look like. People need to learn to be more accepting of appearances anyway - maybe my bald head will help someone see that I am no different bald than with my crazy long thick hair, and realize that hair, (or clothes, or make-up) don't make a person at all. In fact, my youngest son (age 16) now keeps his head shaved down to a #1 or #2 - even though some of his peers give him a very hard time for it. He is more comfortable that way, and knows that he is the same person no matter how much hair he keeps on his head. The exterior doesn't mean a lot, what is inside counts.

    Dear Kathryn
    Thank you very much for your explanation. I guess I have been thinking too much lately ... I worry she might lose all her hair but still cannot control the tumor....that would be too much for her to bear.

    The oncologist told me she will lose her hair and might have diarrhea with irinotecan, he didn't mention anything else. I thought without oxaliplatin, she won't have the neuropathy, mouth sores problem anymore.

    Best wishes, Dora
  • luvmum
    luvmum Member Posts: 457
    westie66 said:

    5FU/Irenotecan/oxaliplatin
    Hi all: How interesting! I'm still on all three (finished treatment 5) and wonder which of the 3 is giving me the 5 days of extreme fatigue that starts about 3 days after the 5FU pump comes off. I know irenotecan is "famous" for severe diarrhea (and so is the 5FU). We'll see what my oncologist says after I get the results of a recent MRI (trying to get rid of nodules on the peritoneum and omentum). Re hair loss. My hair isn't falling out really but rather breaking off and leaving thin patches here and there. The texture of my hair has also changed. Right now it isn't looking too good! I just treat my hair carefully and use a leave-in conditioner (and remember to put a hair catcher into the shower!).
    Keep me posted on progress using irenotecan. I'm not sure what good progress is!
    Cheryl

    Dear Cheryl
    Thank you very much for your reply and sharing. My mum stopped responding to 5FU and oxaliplatin, therefore, her oncologist suggested to use irinotecan and avastin only.

    Best wishes to you,
    Dora