New treatment, old one not getting it!!!

tlsart
tlsart Member Posts: 33
edited March 2014 in Colorectal Cancer #1
Hi one and all!!! I read your posts almost everyday, but rarly participate because my thinking is, I'm only walking in the shoes I've been given, I can't possible walk in someone else's shoes. My shoes now are feeling a little big for me, so I want some insight from anyone who can tell me their experience with these drugs and their side effects.
My ONC says the only real difference will be no cold sensativity and no noropathy. Oh yes well you will have diarrgeaok been there done that. Now I'm reading the informative brochure they send you home with and I'm a little freaked out.
My old drugs have been since Jan 08 Avastin, 5FU/LV oxiplatin folfox6 in various stages of strength and length as my body could tolorate. The last 4 weeks I have had no treatment only PET scans and CT scans and 5.69 CEA. Conclusion tumor in lung, 10 in liver of which 2 are growing. Some may remember at Stage 4 diagnosis I had a CEA of 900+ and 70 nodules in lungs and too many to count in my liver. My ONC says as late as today's meeting I should have been dead by now, comforting as that is, back to my original ???
New drugs to be Folfurry and Camptosar with avastin 5fu/lv. I did NOT lose my hair,well at least not on my head it did thin but I always had it. I'm not that vain and being bald can be beutiful so I'll take that as it comes. Come on though the diarreha and stomach cramps and late stage diarreha can be fatal issue as the brochure states might be worse than the disease what are your thoughts please. I love and pray for you all everyday and I know you prayers are for me as well,so only give me the guts of this treatment should I be freaking out here!!!!!!!!!!!! Thanks Theresa

Comments

  • KFalvey
    KFalvey Member Posts: 118 Member
    #2
    Folfiri
    Hi Theresa,

    I did the Folfiri with Avastin 2 years ago and it wasn't as bad as FOLFOX4. I was lucky since it did not cause me any diarreha.It only made my stomach gurgle alot while it was being infused. It did make me lose alot of hair, but I had a thick head of hair so no one noticed. I was able to take it without any antimeds before hand. They caused me more problems than they were worth. Fatigue was worse, but I just took it easy when I needed to. I personally had a problem taking the 5FU; it gave me respiratory problems, so I quit it by the 9th infusion, finishing with only Camptostar and Avastin the last 3 treatments. I hope you do well with this regimen, with no problems. Good Luck!!
    Kandy
  • msccolon
    msccolon Member Posts: 1,917 Member
    #3
    FOLFIRI
    Theresa, I have to agree, the Camptosar wasn't nearly as bad as the Oxaliplatin for me. I couldn't complete the Oxaliplatin after 3 treatments and had to continue with just 5FU and Leucovorin. The second time around we did the FOLFIRI, which is the one with Camptosar (Irinotican or something like that, hence the IRI). The diarrhea was the worst for me, but they added Sandostatin after a bad bout requiring fluids and that really helped me to control it. I learned what I couldn't eat and when and consumed regular doses of Immodium and Lomotil. I have rather thin hair anyhow, so out came the razor when it started falling out. Not nearly as shocking the second time around, i crocheted and knitted a TON of hats. You'll be fine as long as you keep on top of the diarrhea and see your doc if the meds don't contain it. Easier to control if you don't let it get away from you! And besides, not everyone even gets the diarrhea and you will probably be one of the lucky ones!
    Mary
  • tlsart
    tlsart Member Posts: 33
    #4
    Thanks
    Kandy and Mary,
    Thank you both for your reassurance, today in the light of day I'm getting my fight back, thank God!!!!Boy do I hate those freaking out, flee, run, get out of town moments that come with this sometimes. You both have survived and God dosen't give cancer to weeklings with no sense of humor and compassion, so I thank you for your lifes testamony. You both have my prayers. Theresa
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #5
    tlsart said:

    Thanks
    Kandy and Mary,
    Thank you both for your reassurance, today in the light of day I'm getting my fight back, thank God!!!!Boy do I hate those freaking out, flee, run, get out of town moments that come with this sometimes. You both have survived and God dosen't give cancer to weeklings with no sense of humor and compassion, so I thank you for your lifes testamony. You both have my prayers. Theresa

    Fight mode
    Hi Theresa,

    The flight mode is understandable after the second time around. I just want to say I'm sending good vibes that this chemo is easier then the last. I also think they do the 'worst case scenerio' on those brochures. You know what to do for the diarehea and to talk to your onc if there are problems so no need for the brochure scare tactics? HUGS and tell us how it goes.

    Lisa F.
  • bigCrandy
    bigCrandy Member Posts: 75
    #6
    Much better than folfox
    I had 12 treatments of folfox(damn that oxiliplatin) now I'm doing 12 treatments of folfiri. One down 11 to go. The first one was a breeze. Dyearrea the first hours of treatment but taken care of immediately with some shot. After that, no problemo! Could still be a late stage of Dyearrea, I'll keep you posted. Other than that, a little nausea, some heartburn, fatigue etc. but I'm working full time as a landscaper except for chemo day and 2 pump days every other week. It's still too early to tell, but I'll take the folfiri + avastin anyday. Good luck and god bless, love Randy
  • jenalynet
    jenalynet Member Posts: 361 Member
    #7
    Thinking of you
    I don't have any advice to add but please know I will be keeping you in my thoughts and prayers.. I too am Stage 4 with this disease. Diagnosed Oct. 12th, 2005.. getting ready for new radiation treatment on Monday..Hugs to you, Audrey.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #8
    those brochures!
    Hi -- I haven't had FOLFIRI so can't comment on that but I do want to say those brochures need to be read with a grain of salt -- or not at all. I view them as a sort of legal document that the pharmaceutical company (and our docs, in same cases) HAVE TO give us. But, they are not always that useful and of course they have to list everything and present worse case scenarios. My oncologist -- and the nurses (aka Angels) usually give a pretty good representation of what to expect -- and then this board (and others like it, I am sure) are also SOOO valuable.

    Best of luck to you as you start this next stage of your journey -- and hearty congratulations on how far you have come!! Fantastic --

    Best,
    Tara
  • dixchi
    dixchi Member Posts: 431
    #9
    jenalynet said:

    Thinking of you
    I don't have any advice to add but please know I will be keeping you in my thoughts and prayers.. I too am Stage 4 with this disease. Diagnosed Oct. 12th, 2005.. getting ready for new radiation treatment on Monday..Hugs to you, Audrey.

    Best Wishes
    I am so glad to hear from you, jena. I remember your last post that you had had a recurrence
    and then there were no posts for a while and I got concerned about what had happened to you. Just goes to show how connected we can get to each other even online.

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