So Worried: Getting Ready to Start Folfiri plus Avastin

I'm really worried about the side effects. I did Folfox 5 years ago, and managed to work 3 days a week. I'm scared that the Folfiri plus avastin will take me down harder this time around since the treatment is different. Working is the only thing that made me feel normal. My First treatment is this Friday 10/19. I would appreciate any input. Thanks

Comments

  • geotina
    geotina Member Posts: 2,111 Member
    Welcome to the Board:
    My hubby is taking this mixture minus the 5FU. He is very fatigued. He has been on it for more than a year though so he is kinda beat up right now from chemo. He did experience complete hair loss, legs, head, chest, everything. Now I don't want to alarm you because many, many do not experience complete hair loss just thinning. Just wanted to give you a heads up on it. While he was on Folfox 3 years ago, he handled that one very well, continued to work, etc. He never had trouble with his blood counts but he has with this one, maybe it is the length of time on it, I'm not sure on that. He has had to get neuprogen shots, procrit and a couple blood transfusions. Diarrhea is a major issue on this drug. In fact, the diarrhea is what has caused George most of his problems. Talk to the chemo clinic nurse about what to do if the diarrhea is an issue so you are prepared. Immodium AD is what they usually say. If you go to Costco you can get their brand for a much, much lesser cost.

    Now for the good news, this drug combo works very well. George was an advanced Stage IV when diagnosed 3 1/2 years ago and as of last month, his cancer is stable, he continues to do well, CEA level is lowest it has ever been even though it is still 14, that is very low for him.

    George worked full time until recently when he retired.

    If you have any specific questions you can send me an e-mail/personal message thru this site.

    Take care - Tina
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    geotina said:

    Welcome to the Board:
    My hubby is taking this mixture minus the 5FU. He is very fatigued. He has been on it for more than a year though so he is kinda beat up right now from chemo. He did experience complete hair loss, legs, head, chest, everything. Now I don't want to alarm you because many, many do not experience complete hair loss just thinning. Just wanted to give you a heads up on it. While he was on Folfox 3 years ago, he handled that one very well, continued to work, etc. He never had trouble with his blood counts but he has with this one, maybe it is the length of time on it, I'm not sure on that. He has had to get neuprogen shots, procrit and a couple blood transfusions. Diarrhea is a major issue on this drug. In fact, the diarrhea is what has caused George most of his problems. Talk to the chemo clinic nurse about what to do if the diarrhea is an issue so you are prepared. Immodium AD is what they usually say. If you go to Costco you can get their brand for a much, much lesser cost.

    Now for the good news, this drug combo works very well. George was an advanced Stage IV when diagnosed 3 1/2 years ago and as of last month, his cancer is stable, he continues to do well, CEA level is lowest it has ever been even though it is still 14, that is very low for him.

    George worked full time until recently when he retired.

    If you have any specific questions you can send me an e-mail/personal message thru this site.

    Take care - Tina

    I'm starting this combo
    I'm starting this combo tomorrow too....good luck, there seems to be a group of us, we can keep each other up to date with our experiences. Thankfully we have those who have been through this ahead of us to keep our heads in the right place.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    smokeyjoe said:

    I'm starting this combo
    I'm starting this combo tomorrow too....good luck, there seems to be a group of us, we can keep each other up to date with our experiences. Thankfully we have those who have been through this ahead of us to keep our heads in the right place.

    Hi Smokeyjoe,
    My husband

    Hi Smokeyjoe,

    My husband begins Folfiri with avastin tomorrow too. (Ottawa Cancer Clinic). This will be his second Folfiri experience. He handled it really well last time. A little tired the day after disconnect. We're hoping it goes as smoothly this round. It pleases me that a group of people are starting witinin the same week. We can compare notes!

    Good luck,
    Chelsea
  • k44454445
    k44454445 Member Posts: 494
    hi to all of you.
    i am doing #7 right now of folfiri plus avastin. i have the infusion for around 3 hrs at the clinic then hooked up there to a take home pump with 5fu for 46 hrs. so far i have lost head hair only. enough i got a wig. the back is ok but the front is very patchy. i also have a decrease appitite which goes along with any chemo. i have lost only 6 lbs so as you can see i am not starving! i eat even if i am not hungry so i do not get nausea. i have not thrown up & have not had the "D". about work: i work every other week because i get chemo on mon,tue & wed & choose to take off thur. my work week is mon thru thur. i have been alot better feeling than when last year i did folfox6. i do get tired during chemo week & i sleep more but that is with any chemo. now i did spend this last fri & checked out sat of a hospital. i was dehydrated & had general infection. the dehydration was my stupid fault. i worked all week & was busy & did not drink enough. i had antibiotics & lots of sodium cloride for fluids. by sat after checking out i felt well enough to go grocery shopping! i did get chemo yesterday & on the pump now. on sept 11 i was dx with a left axillary dvt that the onc is not sure why other than it is due to my port. i am on coumadin. now the great news. i had a ct & mri on the 8th of oct to check to see if the chemo is working.
    original dx this time was
    2 abd( 3.4cm x 1.6cm & the other 1.7cm), now are 1.6cm x o.6cm & the other 0.7cm.
    rt ovary (6.6cm x5.1cm) is now 6.5cm so this site may be a cyst.
    liver (1cm) is now gone
    met left hip is now gone
    & peritoneal (multiple sizes largest 3.2cm) have significantly decreased
    all colon cancer.
    so i am very pleased! it has really worked for me. also i am now a candidate for surg after completing the 12tx. if the scans result would not have been as good it would be iffy for surg. even tho it is tough to do chemo i am glad i can get the chemo because it is what i do to save my life. i want to live!!! and you do too! good luck to all of you! if you want ask me questions any time.
    hugs
    judy
  • SharonVegas
    SharonVegas Member Posts: 189
    For me, Folfiri is much more
    For me, Folfiri is much more manageable than Folfox. I did 8 rounds of Folfox6+Avastin last year and it kicked my butt. I just started Folfiri+Zaltrap and it's way easier.
    Good luck with your treatments,
    Ron