Switched from folfox to folfiri?

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emrose
emrose Member Posts: 136
edited March 2014 in Colorectal Cancer #1
Hi everyone

Today my husbands oncologist said he'd switch him to folfiri for his next treatment (#4) because his side effects have been harsh - mainly his throat feeling like it's gonna close up when he drinks, or breaths for that matter. It's not so much a sensitivity to cold or neuropathy, although he has that too.

Anyway, I don't know much other than the oxi will be replaced with irinotecan (camptosar) and he'll still get the 5fu.

I'm concerned that it's not as aggressive and/or won't work as good. If this is just as good, why does almost everyone seem to start with folfox? I hate to see my husband suffer with side effects but I really want him to get the best treatment possible!! I also worried he could just be trading one set of side effects for another set - and then, what's the point?

Any advice? Experience with folfiri?

Thanks so much!!
Laura

Ps. For those of you that asked - I'm doing great physically and the baby is good!! Our first ultrasound was amazing and I'm already 14 weeks and startig to show :) it's really the most amazing experience and my husband and I are both very excited. It's what keeps him going sometimes I think! Thanks so much for caring about us!

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  • robinvan
    robinvan Member Posts: 1,012
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    Irinotecan
    Hi Laura

    When I was first diagnosed, Stg 4 with liver mets in Aug 2004, my oncologist put me on a 6 month regime... 3 months Folfox and 3 months Folfiri. It was his plan and intention to use both to get the best possible outcome. This was post colon and liver surgery.

    It's still a good mix.

    Rob...

    Exciting about the baby! First pictures!
  • emrose
    emrose Member Posts: 136
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    robinvan said:

    Irinotecan
    Hi Laura

    When I was first diagnosed, Stg 4 with liver mets in Aug 2004, my oncologist put me on a 6 month regime... 3 months Folfox and 3 months Folfiri. It was his plan and intention to use both to get the best possible outcome. This was post colon and liver surgery.

    It's still a good mix.

    Rob...

    Exciting about the baby! First pictures!

    Thanks rob
    That's good to know. Maybe a combo is a good thing! (even though he will have only had 3 treatments with thr oxi) By the way, my husband has already had surgery. Diagnosed stage 3 with 1 of 26 lymph nodes positive.

    Anyway, I appreciate hearding about your experience. Did your side effects vary greatly from the folfox?

    Thanks again for your help,
    Laura
  • robinvan
    robinvan Member Posts: 1,012
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    emrose said:

    Thanks rob
    That's good to know. Maybe a combo is a good thing! (even though he will have only had 3 treatments with thr oxi) By the way, my husband has already had surgery. Diagnosed stage 3 with 1 of 26 lymph nodes positive.

    Anyway, I appreciate hearding about your experience. Did your side effects vary greatly from the folfox?

    Thanks again for your help,
    Laura

    Side Effects
    The neuropathy and cold sensitivity is particularly nasty with the oxaliplatin. I managed both OK. On a second round of Irinotecan a couple of years later I did have hair loss... thus the bald picture!

    ttfn... Rob
  • Shayenne
    Shayenne Member Posts: 2,342
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    robinvan said:

    Side Effects
    The neuropathy and cold sensitivity is particularly nasty with the oxaliplatin. I managed both OK. On a second round of Irinotecan a couple of years later I did have hair loss... thus the bald picture!

    ttfn... Rob

    I'm on...
    ....Folfiri. that's what my onc is starting me out with. She doesn't like the folfox, and the side effects, but am sure she uses it for some cases...it's been doing well for me..I've had 3 treatments with it so far, and my tumors are shrinking. Since, I just had colostomy surgery, I have to wait till next month though to resume chemo for my incision to heal, the folfiri doesn't give you hair loss, well, maybe alittle thinning, but I haven't had any bad side effects from it.
  • emrose
    emrose Member Posts: 136
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    Shayenne said:

    I'm on...
    ....Folfiri. that's what my onc is starting me out with. She doesn't like the folfox, and the side effects, but am sure she uses it for some cases...it's been doing well for me..I've had 3 treatments with it so far, and my tumors are shrinking. Since, I just had colostomy surgery, I have to wait till next month though to resume chemo for my incision to heal, the folfiri doesn't give you hair loss, well, maybe alittle thinning, but I haven't had any bad side effects from it.

    That's good to know
    Thanks shayenne. It's helpful to know your experience with it and good to know your oncologist started you right away. I just wonder why it seems like almost everyone is on folfox when there is another option with less side effects.

    Ah, how I wish we knew what was right for everyone! I'm hoping this is easier to endure... And keeps the beast away FOREVER!
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
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    emrose said:

    That's good to know
    Thanks shayenne. It's helpful to know your experience with it and good to know your oncologist started you right away. I just wonder why it seems like almost everyone is on folfox when there is another option with less side effects.

    Ah, how I wish we knew what was right for everyone! I'm hoping this is easier to endure... And keeps the beast away FOREVER!

    Just another thought...
    FOLFOX is one of the standard chemo/combo's for our particular kind of cancer. If I have my information right, I think some oncologists will start patients who have had surgery right away on FOLFOX... and then, if down the road there is a recurrence or there are tumours that they want to shrink and stabilize, they change to FOLFIRI. When having surgery first, depending on a lot of factors (health, age, other health issues, etc) they will bombard you with the heavy duty ammunition (FOLFOX).

    Now, for those who need to have their tumors shrunk before surgery, then they are given FOLFIRI (and possibly Avastin)... with the focus being to shrink the tumors and keep the cancer cells in check... until they have the surgery... then the mop up will be FOLFOX.

    Don't quote me 100% on that... everyone's treatment can be different depending on the factors surrounding your own cases... but if I remember how my oncologist explained it to me (she did this before I had chemo brain ), the above is sort of the jest of it.

    Hugggggs,

    Cheryl
  • claud1951
    claud1951 Member Posts: 424 Member
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    Laura,
    2 years ago, when I

    Laura,

    2 years ago, when I started the chemo, I was on Oxil and Xeloda. After 4 rounds had to stop both because of the side affects. The rest of the treatment I was on camptosar and the 5 fu pump.

    That treatment was so much better for me. It was much more tolerable (for me) and 1 1/2 years after chemo, I'm still NED (no evidence of disease)!

    I lost most of my hair as well. camptosar says hair will "thin" but most of mine came out, and that's okay. I wasn't devastated by it. Someone once said...that is your badge of courage"

    Of course your husband will still get tired (as with all chemo) and there will be times you just don't feel good, but it's "do-able"!

    Best of luck to your husband and you!

    Claudia
    Stage III
  • emrose
    emrose Member Posts: 136
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    claud1951 said:

    Laura,
    2 years ago, when I

    Laura,

    2 years ago, when I started the chemo, I was on Oxil and Xeloda. After 4 rounds had to stop both because of the side affects. The rest of the treatment I was on camptosar and the 5 fu pump.

    That treatment was so much better for me. It was much more tolerable (for me) and 1 1/2 years after chemo, I'm still NED (no evidence of disease)!

    I lost most of my hair as well. camptosar says hair will "thin" but most of mine came out, and that's okay. I wasn't devastated by it. Someone once said...that is your badge of courage"

    Of course your husband will still get tired (as with all chemo) and there will be times you just don't feel good, but it's "do-able"!

    Best of luck to your husband and you!

    Claudia
    Stage III

    Hi Claudia
    I'm so glad you

    Hi Claudia

    I'm so glad you were able to find a chemo with less side effects and you are still NED! That's exactly what we are hoping for! Thanks so much for sharing.

    Cheryl - you are right. It really seems that most people start with FOLFOX and then try FOLFIRI (usually with avistan) if they have a recurrence. I'll definitely talk to our oncologist about it... it's interesting and I just want to make sure i am fully informed. My husband has had surgery and I just want to make sure we are making a good decision. Claudia did ease my mind some though!

    Thanks again everyone!
    Laura
  • Owen9
    Owen9 Member Posts: 3
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    FOLFOX6
    My oncologist said FOLFOX6 would be best in my case. Second opinion at Mayo JAX concurred, saying do it if you can take the side effects....

    So I did.

    My side effects weren't as bad as your hubby's but I still have a hard time typing seven months after the last chemo (clean now, TG). Might take another year for the neuropathy to be minimal.

    BW, Owen9