Okay - I have a plan...anyone have experience with Folfori??

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lmliess
lmliess Member Posts: 329
edited March 2014 in Colorectal Cancer #1
First of all, thank you all so much for your kind responses. We have been in the car for 10 hours now, and that is a lot of time to cry, get mad, feel hopeless, then get it together and make a plan to kick this again!! My DR in Houston caled my ONC's office in Kansas City and suggested Folfori for 3 months. Does anyone have experience with this.

I am feeling positive. (Right now....I know all to well the emotional roller coater I am about to go on again!) I really feel good so I think I can go into this chemo round much stronger than when I did last June, just 8 weeks after my liver resection. Plus, as long as I feel okay, I am going to keep up my training for a 5K, which my DR said would be great.

Any experience with this type and Folfori would be helpful.....

Linda

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  • Wenchie
    Wenchie Member Posts: 88
    #2
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    Folfiri
    Hi Linda,
    I started Folfiri one year ago this month. I had absolutely no problems with it until about August or September and that's when the Camptosar became intolerable. I was bedridden for the entire three days that I had my pump on and threw up all three days. I vomited so much I ended up with ulcers in my throat and at that point, they stopped the Camptosar and all I'm on now is 5FU and Leucovorin and Avastin. I'm not comfortable being on this low dose chemo but it's all I have at this point since I already did Oxaliplatin 2 years ago. My cancer metastisized to my lungs. I hope this helps you.
  • msccolon
    msccolon Member Posts: 1,917 Member
    #3
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    FOLFIRI
    Been there multiple times. Instead of the Oxaliplatin in FOLFOX, you'll be getting Irinotecan, CPT-11, Camptosar (all refer to the same drug). You won't get the sensitivity to cold, nor the neuropathy, but are more likely to lose hair and there's a higher incidence of nausea. Be prepared and get those pre-meds! I think the worst of it for me was the diarrhea, but staying on top of it, and adding in Sandostatin once a month shots helped tremendously! 3 months is totally doable and you will be ahead of the game once again! Training for a 5K, that's amazing! Your strong body will take you far, I'm sure.
    mary
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #4
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    Linda,
    I am glad a plan is
    Linda,

    I am glad a plan is in place for you. I have been on folfiri + avastin since Sept./09 + have had fantastic results so far. Are you on Avastin or only Folfiri? I did not have surgery for my 2 colorectal tumours + they both were not detectable after just 4 treatments. As well the 4 liver mets + affected nodes have responded well. My main issues have been fatigue (especially as treatments went on) + some diarrhea. As well I had a lot of hair loss (now growing back). Please send me a PM if there is anything I can help with.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #5
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    Hi Linda
    Hi Linda,
    It is good to hear you have a plan. You are already gearing up and that is good. **** was on Folfori + Avastin for 6 months. It shrunk the lymph node and made it less intense on a PET. He did OK on it as far as side effects. After about day 4 he was back at the gym, running, surfing. He's pretty tough but I know others have handled it pretty well also.

    Thinking of you.

    Aloha,
    Kathleen
  • pluckey
    pluckey Member Posts: 484 Member
    #6
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    I've been on 5FU,
    I've been on 5FU, Campostar,Erbitux,Leucavorin since last April. My side effects were- cracks/fissures around nail beds/lost hair (but not all), rash from the erbitux. No diarreah (well, when I had my ileostomy bag, yes, crazy diarreah, but i had it reversed and no prob) and only 2-3 times nausea. Sense of taste is off. All in all, i've responded well and no debilitating side effects


    Peggy
  • taraHK
    taraHK Member Posts: 1,952 Member
    #7
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    close
    Hi Linda,

    I'm about to start chemo again. I thought I was going to be doing FOLFIRI + Avastin but just found out today I'm going to be doing XELIRI + Avastin. So, sorry I can't share experiences of FOLFIRI -- but I will be going down a similar path and look forward to comparing notes. I did FOLFOX (and also XELOX) before -- I am looking forward to NOT doing oxaliplatin again! (with sincere apologies to those who are doing it now -- I did it three times!). I wish you all the best!

    Tara

    ps I did a 25K charity walk a few months ago -- I was on a chemo break but it sure felt good! I'm going to be setting myself a goal for this round (physical, that is -- in addition to the psychological goals we all achieve every day!) -- thanks for the inspiration
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #8
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    glad you have a plan now
    Hi Linda,

    I replied to your first post yesterday evening without seeing this one, so I'm glad to read today that you have a plan now. I knew you'd get through the shock and come up with a plan- even faster than I thought!

    I've done Folfiri. Xeliri is an option that some are now doing instead- taking the same main drug- irinotecan (also called CPT-11 or Camptosar), but taking Xeloda pills instead of the 5FU pump and leucovorin). Both are supposedly equally effective- just that the Folfiri plan has been around longer, so some oncs like to stick with what they're familiar with. It's something to mention to the onc, if you don't like the idea of the pump again.

    When I did Folfiri, I was so glad to not be on oxy- so that part made it a little easier. The nausea and diarrhea part were a bit harder, though. That didn't hit me until about the 3rd time of getting it. My hair did thin, but not too bad. (It's actually a lot thinner now that I started on Gemzar/Xeloda)- but still not gone and still no actual bald patches. I got prescription strength diarrhea med- lomotil & that was pretty helpful. As long as I took that I was ok most of the time. But I always had some on hand with me in my purse in case it hit when I was out- I'd get that rumbling then pop a couple of lomotil.

    You can do this & you seem to have the right attitude. Take care and God bless- we're in this together.

    Hugs,
    Lisa
  • lmliess
    lmliess Member Posts: 329
    #9
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    lisa42 said:

    glad you have a plan now
    Hi Linda,

    I replied to your first post yesterday evening without seeing this one, so I'm glad to read today that you have a plan now. I knew you'd get through the shock and come up with a plan- even faster than I thought!

    I've done Folfiri. Xeliri is an option that some are now doing instead- taking the same main drug- irinotecan (also called CPT-11 or Camptosar), but taking Xeloda pills instead of the 5FU pump and leucovorin). Both are supposedly equally effective- just that the Folfiri plan has been around longer, so some oncs like to stick with what they're familiar with. It's something to mention to the onc, if you don't like the idea of the pump again.

    When I did Folfiri, I was so glad to not be on oxy- so that part made it a little easier. The nausea and diarrhea part were a bit harder, though. That didn't hit me until about the 3rd time of getting it. My hair did thin, but not too bad. (It's actually a lot thinner now that I started on Gemzar/Xeloda)- but still not gone and still no actual bald patches. I got prescription strength diarrhea med- lomotil & that was pretty helpful. As long as I took that I was ok most of the time. But I always had some on hand with me in my purse in case it hit when I was out- I'd get that rumbling then pop a couple of lomotil.

    You can do this & you seem to have the right attitude. Take care and God bless- we're in this together.

    Hugs,
    Lisa

    Thank you all again
    for your posts...you are all an inspiration to me. Because of all of you I know I can do this. Reading all of your replies have really made me feel better.

    However, the best feeling was pulling into the driveway at 9:15pm and hearing our daughter SCREAM in excitement that we were home. She asked us both to "not hug so hard!!"

    At that point I knew the fight was on again..... and I will win!!
  • msccolon
    msccolon Member Posts: 1,917 Member
    #10
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    lmliess said:

    Thank you all again
    for your posts...you are all an inspiration to me. Because of all of you I know I can do this. Reading all of your replies have really made me feel better.

    However, the best feeling was pulling into the driveway at 9:15pm and hearing our daughter SCREAM in excitement that we were home. She asked us both to "not hug so hard!!"

    At that point I knew the fight was on again..... and I will win!!

    YEY!
    That sounds awesome! That encourages me to force my kids to cry uncle next time I see them! ;)
    mary
  • Erinb
    Erinb Member Posts: 293
    #11
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    My husband is 36 and
    My husband is 36 and completed 12 cycles of folfox and with his possible recurrance he is on folfiri with erbitux. He just has extreme gas and is in the bathroom a lot with bowel movements. We trying to figure out how much lomotil or immodium to use. Today the dr. suggested fiber to give the poo a thicker consistency. Overall he is fine and still manages to teach, coach, run the summer park program and he is an excellent father to our two year old and a great husband!

    Thinking of you and good luck.
    Erin
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #12
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    Erinb said:

    My husband is 36 and
    My husband is 36 and completed 12 cycles of folfox and with his possible recurrance he is on folfiri with erbitux. He just has extreme gas and is in the bathroom a lot with bowel movements. We trying to figure out how much lomotil or immodium to use. Today the dr. suggested fiber to give the poo a thicker consistency. Overall he is fine and still manages to teach, coach, run the summer park program and he is an excellent father to our two year old and a great husband!

    Thinking of you and good luck.
    Erin

    Poo
    Erin, you might try looking into the Anderson Sloppy Poo Management Plan. Okay, that is not the real name of the paper, but it is something like that. I am not at home or I would post a link. Basically, the plan works you through regiments of increasing, lomotil, immodium and metamucil to achieve the desired output. I am six weeks post ileo takedown and it is the only thing that has produced results so far.
    I'll see if I can at least find the correct title of the publication, but I make no promises.

    ---------------------------------
    I am a Google god! http://www2.mdanderson.org/app/pe/index.cfm?pageName=opendoc&docid=34
    But my short term memory is shot, so I forget the title already.
  • maglets
    maglets Member Posts: 2,576 Member
    #13
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    RickMurtagh said:

    Poo
    Erin, you might try looking into the Anderson Sloppy Poo Management Plan. Okay, that is not the real name of the paper, but it is something like that. I am not at home or I would post a link. Basically, the plan works you through regiments of increasing, lomotil, immodium and metamucil to achieve the desired output. I am six weeks post ileo takedown and it is the only thing that has produced results so far.
    I'll see if I can at least find the correct title of the publication, but I make no promises.

    ---------------------------------
    I am a Google god! http://www2.mdanderson.org/app/pe/index.cfm?pageName=opendoc&docid=34
    But my short term memory is shot, so I forget the title already.

    a plan
    oh Linda....that is good...I am always a big fan of the plan. It does take a bit to adjust mentally to the new plan but that's ok.

    sorry I can't help...just folfox here but wanted to send hugs anyway.

    all the best.....hug!!!!!

    mags

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