FOLFOXFIRI - 1st round OK

taraHK
taraHK Member Posts: 1,952 Member
Hi All,

I had my first round of FOLFOXFIRI last week. It went fine and side effects not too bad. Since I have been on many other 'cocktails' ;) I had some basis for comparison. I would say not too different from, say, being on FOLFOX -- for me. It took me a little longer to be feeling "good". I used to say hey I can feel farily normal 10 days out of 14. Now it may be 7 days -- but that is OK. Hardest thing for me was 'digestive' ('colic', mild diarrhea....). Also, my WBC was hammered -- my onc tested me mid-cycle and it was low (Neutrophil 1.17). So I'm doing Neupogen - five days this time -- we'll see how that goes. But, for those of you who haven't tried this regime, and might be looking at it in the future -- and taking into account individual differences (which can be huge!) my feeling overall was that it was "OK" -- I can do this.

Tara

Comments

  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    hey
    i have been wondering about you and your new treatment cocktail.i am glad you are doing good with it so far .best of luck and keep us posted....Godbless.....johnnybegood
  • hey
    i have been wondering about you and your new treatment cocktail.i am glad you are doing good with it so far .best of luck and keep us posted....Godbless.....johnnybegood

    This comment has been removed by the Moderator
  • westie66
    westie66 Member Posts: 642
    unknown said:

    This comment has been removed by the Moderator

    Folfoxfiri
    Hi: Great, Tara. I hope it continues for you as it is a regime that seems to work. My regime (oxaliplatin/irenotecan/5FU 2 ways/leucovin) has been tough for me, mainly because of the rampant diarrhea (take lomotil) and some severe neuropathy (mostly with the 2nd treatment) but I see a pattern now and can cope with it. In fact, yesterday I ate an entire medium Hawaiian pizza and today a regular dinner meal with wine! No repercussions so far. So I figure 10 days on "white" food (the BRAT diet) and a couple of days in there where I can eat relatively normal. There are some things to watch for with the oxaliplatin however that I got in a report from the company that manufactures it. 92% of patients in clinical trials got neuropathy - of those about 10% got it severely. 44% of patients experienced fatigue, mostly women. Serious neuropathy seems to resemble a seizure. Severe diarrhea can occur because all of the chemicals in this treatment cause it. The company has not tested anything to reduce these side effects.
    Re the low white blood cell counts. Can you get Neulasta? I get it every 2 weeks a day after the 5FU pump comes off. It is only one injection every two weeks (but it is expensive if you don't have a plan that covers it). I don't get any side effects from it but some have.
    Anyways, good going, Tara, and keep me posted as I am only 2 treatments ahead of you.
    Cheryl
  • taraHK
    taraHK Member Posts: 1,952 Member
    westie66 said:

    Folfoxfiri
    Hi: Great, Tara. I hope it continues for you as it is a regime that seems to work. My regime (oxaliplatin/irenotecan/5FU 2 ways/leucovin) has been tough for me, mainly because of the rampant diarrhea (take lomotil) and some severe neuropathy (mostly with the 2nd treatment) but I see a pattern now and can cope with it. In fact, yesterday I ate an entire medium Hawaiian pizza and today a regular dinner meal with wine! No repercussions so far. So I figure 10 days on "white" food (the BRAT diet) and a couple of days in there where I can eat relatively normal. There are some things to watch for with the oxaliplatin however that I got in a report from the company that manufactures it. 92% of patients in clinical trials got neuropathy - of those about 10% got it severely. 44% of patients experienced fatigue, mostly women. Serious neuropathy seems to resemble a seizure. Severe diarrhea can occur because all of the chemicals in this treatment cause it. The company has not tested anything to reduce these side effects.
    Re the low white blood cell counts. Can you get Neulasta? I get it every 2 weeks a day after the 5FU pump comes off. It is only one injection every two weeks (but it is expensive if you don't have a plan that covers it). I don't get any side effects from it but some have.
    Anyways, good going, Tara, and keep me posted as I am only 2 treatments ahead of you.
    Cheryl

    so similar
    Hi Cheryl,

    Sounds like we are on the same/very similar regimes. When you say "5FU two ways", do you mean bolus plus push (is those the right terms? 48 drip plus faster initial drip?). Yes, diarrhea and cramps were the worst side effect for me this time -- but no so serious as to even need Immodium -- at least this round. Took 8 days to settle- so I'm experiencing 6 "good days" this cycle. My onc reckons if my WBC can stay up, the tummy problems may be better. He prefers Neupogen to Neulasta. I give myself the shots at home (saves going to the hospital - yea) which is fine. I had NO neuropathy this time, which is amazing (I've had it before....). But, it was only the first time (this time). He slowed down the drip for the Oxi from 2 hrs to 4 -- I wonder if that was a factor.....).

    Good luck to you and yes let's keep in touch, "partner"!

    Tara
  • westie66
    westie66 Member Posts: 642
    taraHK said:

    so similar
    Hi Cheryl,

    Sounds like we are on the same/very similar regimes. When you say "5FU two ways", do you mean bolus plus push (is those the right terms? 48 drip plus faster initial drip?). Yes, diarrhea and cramps were the worst side effect for me this time -- but no so serious as to even need Immodium -- at least this round. Took 8 days to settle- so I'm experiencing 6 "good days" this cycle. My onc reckons if my WBC can stay up, the tummy problems may be better. He prefers Neupogen to Neulasta. I give myself the shots at home (saves going to the hospital - yea) which is fine. I had NO neuropathy this time, which is amazing (I've had it before....). But, it was only the first time (this time). He slowed down the drip for the Oxi from 2 hrs to 4 -- I wonder if that was a factor.....).

    Good luck to you and yes let's keep in touch, "partner"!

    Tara

    So Similar
    Hi Tara: I just got back from 5 hrs of chemo today and it went much better as the oncologist reduced the amount and infusion rate of the oxaliplatin (the neuropathy culprit) so still 2 hours as well as the amount of irenotecan (the diarrhea culprit). Just a litle shaky and dizzy but nothing like last week. I also take 5 grams of L-glutamine every day with B6 and calcium/magnesium. So we'll see! By 5FU two ways - for me, a quick infusion at the end of chemo and then they attach a pump to infuse it in slowly for 46 hrs - it comes off on Thursday. Re the Neulasta. I could not inject myself - tried, failed miserably and so the injection every day for 10 days just wouldn't work as I'd have to go to a clinic. So luckily I could do the Neulasta ($2500 Canadian for one injection!) and my plan covers it. You are brave!
    Now for more white rice!
    You bet, let's support each other on this as we're at about the same stage of treatment (mine is for gallbladder cancer though).
    Cheryl