FOLFIRI w/Avastin

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Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
Well, even though things got a bit rougher for me than at first, I still say for me, FOLFIRI w/Avastin is doable, and MUCH more tolerable than FOLFOX.

I'm getting ready for chemo round #14 on Thursday (2nd FOLFIRI). I dreaded round #2 of FOLFOX so badly I would have rather had surgery again, or had someone put a bullet to my head. It was that bad for me. But I'm ok with my upcoming second round of FOLFIRI. It doesn't hurt that I got 6 extra days between this cycle. ;)

For me, I was severely constipated for several days last round, so this time I'm taking peri-colace each night for days 1, 2, 3, 4 and 5. And I'm not playing around with the diarrhea next time. Even when I was taking Imodium two to start, one every 2 hours all day, 2 at bedtime, and set the alarm if needed to take 2 more 4 hours into the night, I couldn't stop it. I'd stop eating and be ok. I'd eat and within 15-45 minutes I'd be trotting back to the porcelain. On day 14 of the cycle I was still having bad diarrhea. Then I got a script for Lomatil. One tiny little pill, and I was under control! So I now have my two miracle drugs that I can't do this without - Emend and Lomatil. I'm prepared with the Lomatil for round #2 FOLFIRI.

I have an almost constant tiny nose drip - I think that is from the Avastin. Bothersome, but not a big deal. My energy levels have been WAY higher than on FOLFOX - no comparison. My blood counts stayed better too. And while I had nausea that lasted for almost two weeks, it wasn't constant - it would come and go in waves. And I could eat a much wider variety of food. I wasn't stuck on nothing but Cream of Wheat and mashed potatoes for days on end. I got outside for a lot more exercise and sunshine which also helps a lot. I could barely get up and down my stairs in the house for the first 5-10 days on FOLFOX.

One weird thing - no oxy and my neuropathy was getting better. My hands were getting close to normal. My feet were still pretty bad though. Now I realize my feet were getting better, because in the last two weeks they have gotten a lot worse. My hands have gone backwards a bit too. It doesn't really make sense since I'm not on oxy any more. But maybe I didn't get a long enough break from all the chemicals and somehow my nerves are being damaged again when they were trying to repair? Very strange. My hands aren't that bad - I can deal with it. I sure hope my feet don't get worse than they are now. They are quite bothersome. Lots of pain - I can't stand to have socks or shoes on - that flares up the hypersensitivity. Usually my big fluffy obnoxious slipper socks felt ok on them, but now they bother me too. I can deal with the neuropathy, I just wish I didn't have to...

Now, for those of you that lost your hair after round #2 of FOLFIRI. I've made a discovery. It isn't round #2 that makes you lose it. I think it is timing from the first infusion. On day #16 I started losing it. Day #17 I lost a LOT of hair - close to 1/4 of mine. Today (#18) I'm still losing it, but at a lot slower rate. Since I didnt' start losing it on FOLFOX till around #5, and lost about 9/10 of it before it stopped (didn't stop losing until 6 weeks after chemo was done), I don't plan to have much hair left soon. Maybe I'll just keep thinning for a few days each cycle like I did with FOLFOX. Or maybe it will keep falling out daily? I just don't know. At any rate, I don't expect to have any hair by Thanksgiving, if it isn't all gone before Halloween. I'm ok with that. I cut it short and got to see what I look like with short hair (hasn't been this short since I was 6 months old). Now I'll get to see what I look like with a bald head. My son is going to shave his head once I do. And he has mentioned trying to get the entire sophomore basketball team to shave to - maybe even the JV and Varsity will join in. Last winter when the coaches did their Coaches for Cancer fundraiser, they donated it to me. This year maybe I'll get the coaches to shave their heads! ;) Oh - another bonus of losing hair - I'm losing it in places that I don't want it anyway. I can stop shaving and trimming other body areas! I just hope I keep my eyelashes and eyebrows.

I sure hope FOLFIRI and Avastin work for me to kill these stubborn cancer cells. I can't imagine going back on FOLFOX (which did work well enough to trick us into thinking we got it all, but not well enough to finish the job). I can do this on the current chemo cocktail. I can LIVE on this one. The best I can do on FOLFOX is survive - but I can't call it living. That mix just doesn't agree with my body at all.

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  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #2
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    Hi my mate, some coments here:
    Nose and hear issues normal to me but not big problem.Also small breath problems bit of cough and phlegms.
    neuropathy, yes I have it too but at the end of the cycle improves a lot then after infusion back to it.
    Hair loose Since the end of first cycle, but be aware l would say that 20/30 % remain on , so l don't suggest to shave it if you can manage your look with that amount of hair!.
    In my case I have shaved my head and now that 30 % that probably would remain on my head is growing back and causing me lots of problems with
    hives.
    And the worst in my case , roids very painful at the beginning of each cycle ,not exactly roids but kind of cracking in my .......
    And of course it will work!
  • WhatsA_Mom2Do
    WhatsA_Mom2Do Member Posts: 46
    #3
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    Wishing you the best
    Hi Kathryn,

    It's good to hear that you are doing better on the FOLFIRI/Avastin. My son seems to tolerate it better as well. He had to stop the Oxaliplatin part of FOLFOX after 6 treatments due to Grade 4 neuropathy. No return of the neuropathy thus far. He hasn't lost his hair after 5 treatments (he's on the 6th one as I type). He also experiences the forever running nose...but we'll take that over some of the other crap he's been through!

    On a better note....his CEA is down to 2.5 (was 9.3 just prior to treatment). So here's hoping you get great results as well! He's due for a CT scan soon to see if those pesky lymph nodes are shrinking!

    Be encouraged....

    Dee
  • bdee
    bdee Member Posts: 304
    #4
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    My reactions
    I, too, have the runny nose. I keep Kleenex in every room I'm in and the car and my purse and my pockets, etc. But I had the runny nose problem even before the CPT-11. My hair was so thin after my second treatment my husband shaved it for me. But I have been bald before, when I was on oxy, that it doesn't really bother me. My husband, son and daughter all shaved their heads for me that time, but I told them not to bother with it this time. And, as my Grandson says, "Mawmaw, if it doesn't bother you than don't worry if it bothers anybody else." So I usually go out bald most of the time. Now that it is getting cold, though, I'm going to have to start wearing something on my head.
    My first and second treatment caused lots of nausea, but I've had 9 treatments and the nausea has gone away on all but the 1st day. I always throw up at chemo or on the way home, but not anymore for the two weeks before another treatment. This is the first week I've been constipated so they will probably cut out one of the Edmend shots at chemo and I've cut out the Lomotil at home and started taking fiber again. But I had such bad diarrhea with just Avastin and 5FU that I'll keep Lomotil close to me. LOL
    One good thing, my CEA was 13.4 when my doctor added the CPT-11. Last week it was 7.5.
    Good luck to you,
    Debbie from Arkansas
  • maglets
    maglets Member Posts: 2,576 Member
    #5
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    bdee said:

    My reactions
    I, too, have the runny nose. I keep Kleenex in every room I'm in and the car and my purse and my pockets, etc. But I had the runny nose problem even before the CPT-11. My hair was so thin after my second treatment my husband shaved it for me. But I have been bald before, when I was on oxy, that it doesn't really bother me. My husband, son and daughter all shaved their heads for me that time, but I told them not to bother with it this time. And, as my Grandson says, "Mawmaw, if it doesn't bother you than don't worry if it bothers anybody else." So I usually go out bald most of the time. Now that it is getting cold, though, I'm going to have to start wearing something on my head.
    My first and second treatment caused lots of nausea, but I've had 9 treatments and the nausea has gone away on all but the 1st day. I always throw up at chemo or on the way home, but not anymore for the two weeks before another treatment. This is the first week I've been constipated so they will probably cut out one of the Edmend shots at chemo and I've cut out the Lomotil at home and started taking fiber again. But I had such bad diarrhea with just Avastin and 5FU that I'll keep Lomotil close to me. LOL
    One good thing, my CEA was 13.4 when my doctor added the CPT-11. Last week it was 7.5.
    Good luck to you,
    Debbie from Arkansas

    all good reports
    well that is so good to hear from all of you and hear of dropping cea's....good stuff.

    Kathyrn I am also happy to hear about your reaction to the folfiri as opposed to the the folfox. I too found oxy almost impossible so it is so good to hear that another drug is still ahead and that is is tolerable.

    Best of luck on the next round....

    maggie

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