FOLFIRI w/Avastin

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Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
I don't want to jinx myself, but so far FOLFIRI and Avastin are a picnic for me compared to FOLFOX. This is still no fun, and I'm quite miserable, but in comparison, I don't wish I were dead today, like I did my first round of FOLFOX!

I had a little gurgling and loose stool day of infusion, but no real diarrhea. Since then I've been constipated till I had a little success today. On FOLFOX day 5 was the "let loose" day. I'm holding my breath, waiting for the late onset diarrhea that Irinotecan is famous for. I'll be shocked if I don't get it, but just maybe I'm going to get a break this time! Part of the difference is being on Emend right from the start. And part is from no weird syndrome or allergic reactions so far.

I waffled between trying to get everything in place before starting chemo, or pushing to get moving on it again as fast as I could. I got scared and pushed to get back on quickly. Now I am glad. My CEA was 11.9 on Friday. That is the highest it has ever been. One year ago it climbed to 8 before going back down. Last month it was back up to 8. Now almost 12. It is good I'm back on chemo (as much as I hate it).

I got all my scans, biopsies and treatment recap to send to a friend who works in oncology at Duke. One of the doctors there (friend of hers) has agreed to look over my file and give an opinion on doing something to remove or destroy those three lymph nodes with cancer. Right now they are the only evidence of disease I have. Liver and lungs are clear. But I worry that I may have other peritoneal mets considering the location of these three nodes. My oncologist says two of these may be the SAME two nodes that lit up one year ago. Yet he doesn't seem too concerned with getting them out. I am!

I'm praying that FOLFORI continues to be tolerable for me so that I can stay on it for my scheduled 12 rounds. There is no way I could do another 12 rounds of FOLFOX right now. It would kill me.

I know all chemo cocktails hit everyone differently, but most people told me they tolerated FOLFIRI a lot better than FOLFOX. Although I'm only 4 days into the first cycle, so far the same is true for me. So anyone else getting ready for FOLFIRI that had a hard time on FOLFOX, I hope this gives you a little encouragement.

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Folfiri
    Hey You:)

    I'm on Day 7 of Cycle #1. Overall, I tend to agree with you...Folfiri compared to Folfox is better by different degrees.

    I started off strong and when the pump came off, the fatigue and nausea kicked in - the Big D finally hit yesterday and today and was pretty sick from that.

    My situation is slightly different than yours because I have to do Neulasta shots to raise my WBC's. They are the worst for me and give me extreme 24-hour headaches for a a couple of days.

    I was completely bedridden yesterday suffering from headaches and today to some degree, although I think it's starting to turn. Just to post tells me I'm better than yesterday, 'cause yesterday - no way.

    I'm with you, hope to be able to do my 12 and hang it up. Radiation is coming too - and that's a different equation altogether.

    This is not going to be ez for me, but I'm going to try and stay with it and deal with it.

    Glad you're ok, Kathyryn. Stand by for the D....

    -Craig
  • lesvanb
    lesvanb Member Posts: 905
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    Yay, a break in the onslaught
    Kathryn, I'm so glad that this is tolerable and I really hope that your break continues. You have put up with a ton. I think that's great to get another opinion and I agree with wanting to get things out. I feel the same and am working hard to get on this IV Vitamin C protocol pronto to deal with stuff when it's small.

    love and standing with you,
    Leslie
  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    Sundanceh said:

    Folfiri
    Hey You:)

    I'm on Day 7 of Cycle #1. Overall, I tend to agree with you...Folfiri compared to Folfox is better by different degrees.

    I started off strong and when the pump came off, the fatigue and nausea kicked in - the Big D finally hit yesterday and today and was pretty sick from that.

    My situation is slightly different than yours because I have to do Neulasta shots to raise my WBC's. They are the worst for me and give me extreme 24-hour headaches for a a couple of days.

    I was completely bedridden yesterday suffering from headaches and today to some degree, although I think it's starting to turn. Just to post tells me I'm better than yesterday, 'cause yesterday - no way.

    I'm with you, hope to be able to do my 12 and hang it up. Radiation is coming too - and that's a different equation altogether.

    This is not going to be ez for me, but I'm going to try and stay with it and deal with it.

    Glad you're ok, Kathyryn. Stand by for the D....

    -Craig

    lm am in my 5,day of my 3 cycle not any major
    effects until now! docs, told me that if after first 1 or 2 rounds not major effects, more chances to tolerate it in the further ones! in my case only 6 rounds before radiation, (some little nodes).
    Hope it continues like that for every body!
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Options
    lesvanb said:

    Yay, a break in the onslaught
    Kathryn, I'm so glad that this is tolerable and I really hope that your break continues. You have put up with a ton. I think that's great to get another opinion and I agree with wanting to get things out. I feel the same and am working hard to get on this IV Vitamin C protocol pronto to deal with stuff when it's small.

    love and standing with you,
    Leslie

    Can you explain about this protocol a little beat more
    Leslie?
  • lesvanb
    lesvanb Member Posts: 905
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    pepebcn said:

    Can you explain about this protocol a little beat more
    Leslie?

    pepe
    Here's the info at the University of Kansa Med Ctr website on integrative med: http://integrativemed.kumc.edu/ivvitaminc.htm.

    It appears once started, it should be continued.


    Leslie
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Options
    Sundanceh said:

    Folfiri
    Hey You:)

    I'm on Day 7 of Cycle #1. Overall, I tend to agree with you...Folfiri compared to Folfox is better by different degrees.

    I started off strong and when the pump came off, the fatigue and nausea kicked in - the Big D finally hit yesterday and today and was pretty sick from that.

    My situation is slightly different than yours because I have to do Neulasta shots to raise my WBC's. They are the worst for me and give me extreme 24-hour headaches for a a couple of days.

    I was completely bedridden yesterday suffering from headaches and today to some degree, although I think it's starting to turn. Just to post tells me I'm better than yesterday, 'cause yesterday - no way.

    I'm with you, hope to be able to do my 12 and hang it up. Radiation is coming too - and that's a different equation altogether.

    This is not going to be ez for me, but I'm going to try and stay with it and deal with it.

    Glad you're ok, Kathyryn. Stand by for the D....

    -Craig

    Neulesta
    I had to get Neupogen shots every round last time. The first several cycles I had them on days 5, 6 and 7. After a while I was able to cut back to just two - days 5 and 6. I hated having to go in to the onc's office so much. And the chest pain wasn't fun either. This time I am getting labs on Friday to see how I hold up. My onc thinks oxy was just super toxic for me, and that I have a chance of getting by without all those troubles on FOLFIRI.

    If I have to get the shots again, I am working out a way to get them at home. My husband can give them to me. He did a great job with the Lovenox shots when I got the PE last winter.

    I think the severe headaches I get are from the anti-emetics and the 5-FU. My tinitus has gotten really bad again, and with that comes the headaches. I had ocassional headaches before, but NOTHING like on chemo.

    So you didn't get diarrhea till day 6? I guess it could still be lurking, waiting for me... I've got my Immodium ready.

    Are you doing Avastin too?
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Options
    lesvanb said:

    pepe
    Here's the info at the University of Kansa Med Ctr website on integrative med: http://integrativemed.kumc.edu/ivvitaminc.htm.

    It appears once started, it should be continued.


    Leslie

    Thks
    Leslie
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Neulesta
    I had to get Neupogen shots every round last time. The first several cycles I had them on days 5, 6 and 7. After a while I was able to cut back to just two - days 5 and 6. I hated having to go in to the onc's office so much. And the chest pain wasn't fun either. This time I am getting labs on Friday to see how I hold up. My onc thinks oxy was just super toxic for me, and that I have a chance of getting by without all those troubles on FOLFIRI.

    If I have to get the shots again, I am working out a way to get them at home. My husband can give them to me. He did a great job with the Lovenox shots when I got the PE last winter.

    I think the severe headaches I get are from the anti-emetics and the 5-FU. My tinitus has gotten really bad again, and with that comes the headaches. I had ocassional headaches before, but NOTHING like on chemo.

    So you didn't get diarrhea till day 6? I guess it could still be lurking, waiting for me... I've got my Immodium ready.

    Are you doing Avastin too?

    Not Yet
    We talked about Avastin, but nothing concrete just yet. Vectibix is in the arsenal if needed. Don't want to go there either.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
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    Sundanceh said:

    Not Yet
    We talked about Avastin, but nothing concrete just yet. Vectibix is in the arsenal if needed. Don't want to go there either.

    KRAS Mutant
    I can't get Erbitux and I think Vectibix is similar - won't do any good for me.
  • taraHK
    taraHK Member Posts: 1,952 Member
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    Neulesta
    I had to get Neupogen shots every round last time. The first several cycles I had them on days 5, 6 and 7. After a while I was able to cut back to just two - days 5 and 6. I hated having to go in to the onc's office so much. And the chest pain wasn't fun either. This time I am getting labs on Friday to see how I hold up. My onc thinks oxy was just super toxic for me, and that I have a chance of getting by without all those troubles on FOLFIRI.

    If I have to get the shots again, I am working out a way to get them at home. My husband can give them to me. He did a great job with the Lovenox shots when I got the PE last winter.

    I think the severe headaches I get are from the anti-emetics and the 5-FU. My tinitus has gotten really bad again, and with that comes the headaches. I had ocassional headaches before, but NOTHING like on chemo.

    So you didn't get diarrhea till day 6? I guess it could still be lurking, waiting for me... I've got my Immodium ready.

    Are you doing Avastin too?

    WBC
    For what it's worth, the FOLFIRI is much easier on my white blood cell counts than FOLFOX was. I had to have Neulasta shots while on folfox but my WBC counts have been fine on xeliri (8 cycles so far). When I did neulasta, I gave myself the shots at home. Like you, I wanted to avoid the hospital if at all possible!!

    Good luck!

    Tara
  • taraHK
    taraHK Member Posts: 1,952 Member
    Options
    taraHK said:

    WBC
    For what it's worth, the FOLFIRI is much easier on my white blood cell counts than FOLFOX was. I had to have Neulasta shots while on folfox but my WBC counts have been fine on xeliri (8 cycles so far). When I did neulasta, I gave myself the shots at home. Like you, I wanted to avoid the hospital if at all possible!!

    Good luck!

    Tara

    woops
    woops - I'm on xeliri, not folfiri (talk about chemobrain!!)

    T