Irinotecan Regime Kicking Butt. Need Tips

here4lfe
here4lfe Member Posts: 306 Member
in Colorectal Cancer #1
Background: Wife, 47 at diagnosis, July 2009, Stage 4 Colon Cancer. FOLFOX, 12 rounds. Numerous surgeries, liver resection, liver tumor embolizations, on and on. Each time, she sailed through (except for the liver infection).

Now: Xeloda, Irinetecan, Avastin, Neulasta. Round 3 on Friday, and today she can't get out of the bed.

Need tips on expected recovery time, supplementation for strength, and motivation for keeping moving.

Thanks.

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    I'll let ya know in a week or so...
    I'm starting Irinotecan/Leucovorin/Avastin/5fu next Monday...not sure what to expect...when I did oxy it was a week shot then the second week was good, with the Folfiri its going to be Irrinotecan instead of oxy so I guess we will see.....Through Oxy I never did get my strength back until I was off of it and then it took about a year to start feeling strong again, but then again, it made me sicker than it does most people.....best wishes for her, and for you........buzz
  • here4lfe
    here4lfe Member Posts: 306 Member
    #3
    Buzzard said:

    I'll let ya know in a week or so...
    I'm starting Irinotecan/Leucovorin/Avastin/5fu next Monday...not sure what to expect...when I did oxy it was a week shot then the second week was good, with the Folfiri its going to be Irrinotecan instead of oxy so I guess we will see.....Through Oxy I never did get my strength back until I was off of it and then it took about a year to start feeling strong again, but then again, it made me sicker than it does most people.....best wishes for her, and for you........buzz

    Thanks Buzz
    I've followed your journey, and I will ask if my wife is also on the leucovorin.

    Best
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #4
    here4lfe said:

    Thanks Buzz
    I've followed your journey, and I will ask if my wife is also on the leucovorin.

    Best

    Leucovorin
    She isn't. The Xeloda is a substitute for the 5FU drip, which is where Buzz will be getting his Leucovorin (in combination with Fluorouracil).

    With Xeloda, the body does most of the processing converting the drug to Fluorouracil, and the Leucovorin (a folonic acid) is not needed for the treatment.

    With the shortage of Leucovorin a number of patients are being moved to Xeloda as a substitute. It is equally effective, has some slightly different side effects, and can be more expensive for the patient (since it falls under their prescription medication plan).
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #5
    My Experience is Never Anybody's Else's.....
    But, here goes...

    I did this protocol only with 5-fu instead of the Xeloda.

    I had major lung surgery first, followed by 30 harsh treatments of radiation w/5fu for six straight weeks, 24 hours a day. Then we moved straight to the Folfiri chemo. No breaks, just over hill - over dale.

    I was SICK and I mean sick 24 days out of 30. Which meant I had no quality of life with this treatment plan at all. I was in bed quite a bit of the time. Out of 6-months of treatment, I had 18 days out of 180 days that I felt marginal at best.

    It was literally a living death for me. The protocol did have some success as it knocked my cancer back down enough to no longer be detectable in the scans, but somehow I feel it is lurking and waiting. I'm hoping it bought me at least a year or more - or perhaps it will never show again. Only time will tell.

    I found hygiene to be a problem and I had not the strength to even shower for days on end. Things got pretty ripe. Usually, just trying to get something to eat was the highlight of the day and if I wasn't sleeping, I was at least lying down.

    Towards the evening about 5'ish, I would get up and move to the couch and sit up a couple of hours and then back to bed.

    I just found it to be much more debilitating for me than the Oxy was, minus the neuropathy. The steroids I was on (DEX) combined with the Irinotecan turned me into a monster, like Dr. Jekyll and Mr. Hyde. I hated what I had become through that.

    When I finished, I was literally at the end of the rope. Not sure if I could have done anymore without some kind of break. But all in all, my treatment was agressive and covered 12 months of non-stop battle.

    I experienced degrees of renal failure from the Irinotecan - it says it causes this in the "white papers" from the manufacturer.

    The result was though, that I got back ahead of my cancer for a spell.

    I've had cancer 3x and have knocked it down 3x. Even though I've experienced recurrence, I've had some success.

    But, these are some tough drugs and they pack quite a wallop.

    I'm hopeful that yours and Buzz's experiences are nowhere close to this. I am the oddball of the group - always have been - always will be.

    If I were facing it again.....I just don't know.....

    I used no supplements for this last battle, couldn't afford them, so used my body as an experiement of sorts. I found that I got to a 'watch and wait' state just the same as someone who was doing supplements.

    As far as motivation, the will to live is a pretty good motivator. Alot of days I was unsure of why I was fighting and what my motivation was. I still don't have that answer. Me beating cancer three times has never impressed anybody I know - they take it for granted or are apathetic at best.

    Part of my movitvation was to be able to tell the board that someone who has been actively fighting cancer for 7+ years with 3 recurrences can overcome.....

    I'm wishing you nothing but the best as well as Buzz. I know already that you will overcome and make it back to shore safely and in one piece.

    I've been keeping up with your story - so just keep going and things will work themselves out.

    Note: Leucovorin is in very short supply around the nation, so there may be times when she does not get this with her treatment. 4 of my last 12 treatments came without the drug, even at an NCI facility due to the shortage.

    There's a hint that 5-fu is going this same route, but since you're doing Xeloda, you will avoid that if it comes to fruition. Xeloda is hard on the stomach and very bad on the hands and feet. Makes them blister and peel horribly. Use some bag balm cream early on to head off any difficulties there.

    Apply at least 3x a day - morning, noon and bedtime. Slather it all over the feet and put socks on to hold in moisture. It will help.

    -Craig
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #6
    Some other thoughts
    I was on Xeloda for about a week during radiation therapy. I got so sick my Onc took me off.

    I found 5FU to be a real butt-kicker as well, but I worked all the way through Folfox.

    Currently I am on Irinotecan every other week, and it takes me about three days to recover, two before I really get out of bed.

    There is also the issue of the Neulasta, while it keeps the white blood count up (protecting from infection) it does have its own side effects, including weakness (fatigue?).

    Discuss all of the side effects, including the fatigue, with the Oncologist. There may be more going on here and s/he needs to be aware of it.

    Good luck, and hoping for the best for your wife.
  • here4lfe
    here4lfe Member Posts: 306 Member
    #7
    Buckwirth said:

    Some other thoughts
    I was on Xeloda for about a week during radiation therapy. I got so sick my Onc took me off.

    I found 5FU to be a real butt-kicker as well, but I worked all the way through Folfox.

    Currently I am on Irinotecan every other week, and it takes me about three days to recover, two before I really get out of bed.

    There is also the issue of the Neulasta, while it keeps the white blood count up (protecting from infection) it does have its own side effects, including weakness (fatigue?).

    Discuss all of the side effects, including the fatigue, with the Oncologist. There may be more going on here and s/he needs to be aware of it.

    Good luck, and hoping for the best for your wife.

    I'm Printing This
    So my wife can read it. Thanks guys!

    Best
  • westie66
    westie66 Member Posts: 642
    #8
    here4lfe said:

    I'm Printing This
    So my wife can read it. Thanks guys!

    Best

    Irenotecan etc
    Hi all: I have been on oxaliplatin + irenotecan + 5FU + the leuco... + the Neulasta injection for 8 treatments now and things have been going well. Just some severe diarrhea and fatigue plus some hair breakage. For me, only lasts about 5 days. My treatment schedule is every 2 weeks. I had the dosage and infusion rate of the oxaliplatin reduced a bit. Last year though I was on cisplatin and gemcitibine and that was a breeze compared to this. And I have to pay for the oxaliplatin (about $2600 for 3 treatments). But would also have to pay for the Xeloda (very very expensive in Canada and not covered).
    Good luck to your wife.
    Cheryl
  • here4lfe
    here4lfe Member Posts: 306 Member
    #9
    westie66 said:

    Irenotecan etc
    Hi all: I have been on oxaliplatin + irenotecan + 5FU + the leuco... + the Neulasta injection for 8 treatments now and things have been going well. Just some severe diarrhea and fatigue plus some hair breakage. For me, only lasts about 5 days. My treatment schedule is every 2 weeks. I had the dosage and infusion rate of the oxaliplatin reduced a bit. Last year though I was on cisplatin and gemcitibine and that was a breeze compared to this. And I have to pay for the oxaliplatin (about $2600 for 3 treatments). But would also have to pay for the Xeloda (very very expensive in Canada and not covered).
    Good luck to your wife.
    Cheryl

    Wow
    Thanks Cheryl. The regime you're on looks tough. My wife's CEA is dropping like a rock, so we know it's working.

    Best
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #10
    Hi
    Just want to say I'm praying for you and your wife.

    *hugs*
    Gail
  • westie66
    westie66 Member Posts: 642
    #11
    here4lfe said:

    Wow
    Thanks Cheryl. The regime you're on looks tough. My wife's CEA is dropping like a rock, so we know it's working.

    Best

    Dropping CEA levels
    Great! happy to hear that!
    Cheryl
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #12
    nmsg
    nmsg
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #13
    Irinotecan
    Similar here except no liver involvement - I have multiple distant lymph node involvement. Dx'd at age 47.

    I was dx'd August 2009, resection, FOLFOX for 12tx. Showed NED, but it turned out I was stage IV all along. Started FOLFIRI and Avastin September 2010. I've been on Avastin the full time. After 8 tx my CEA had really dropped and scans looked good so we dropped the Irinotecan. I had progression again. Added Irinotecan back in and CEA dropped again. So we dropped the 5-FU, and have just been doing Irinotecan and Avastin since May. When on FOLFIRI I had to get Neulasta shots because my counts dropped so low I had to wait 2 extra weeks (4 weeks between treatments). My counts do ok w/o the 5-FU - I was able to drop the Neulasta. I tolerate chemo much better without 5-FU and without the Neulasta.

    The longer you are on chemo, the harder it is to bounce back. I don't know that there is anything in particular to deal with the fatigue other than to rest when your body says rest. I've had over 35 tx of chemo and I'm really wearing down. I just have to plan on one really tough week, and the next week being better.

    The main things to do are make sure she stays hydrated, and keeps protein intake up. Is she battling with the early or late onset diarrhea, or both? That can really wear you down. I found that we need to pay attention to the oncology dosing for Imodium, and NOT what it says on the bottle, when dealing with the Irinotecan diarrhea. I've finally gotten better in dealing with it, but it took me close to 20 tx to get there... Do not be afraid of taking too much Imodium if needed! I have to continue it for 24 hours after I think I am ok - taking it each time before I eat. I found bumping up my protein intake, doing away with whole grains (hard for me), peeling and de-seeding fruits and vegetables, eating Greek yogurt daily - are all things that helped a lot. I also drink Bolthouse Farms Green Goodness each day. My oncology dietician told me to get Naked Juice or similar because I should have no more then 4 ounces at a time if I'm having diarrhea issues. My juicer is too much of a pain to clean if I can only do 4 ounces. I like the Bolthouse Farms.
  • marqimark
    marqimark Member Posts: 242 Member
    #14
    Buzzard said:

    I'll let ya know in a week or so...
    I'm starting Irinotecan/Leucovorin/Avastin/5fu next Monday...not sure what to expect...when I did oxy it was a week shot then the second week was good, with the Folfiri its going to be Irrinotecan instead of oxy so I guess we will see.....Through Oxy I never did get my strength back until I was off of it and then it took about a year to start feeling strong again, but then again, it made me sicker than it does most people.....best wishes for her, and for you........buzz

    Buzz
    Good luck with the new regimine.

    I do not envy you.

    Prayers

    Mark
  • here4lfe
    here4lfe Member Posts: 306 Member
    #15
    Kathryn_in_MN said:

    Irinotecan
    Similar here except no liver involvement - I have multiple distant lymph node involvement. Dx'd at age 47.

    I was dx'd August 2009, resection, FOLFOX for 12tx. Showed NED, but it turned out I was stage IV all along. Started FOLFIRI and Avastin September 2010. I've been on Avastin the full time. After 8 tx my CEA had really dropped and scans looked good so we dropped the Irinotecan. I had progression again. Added Irinotecan back in and CEA dropped again. So we dropped the 5-FU, and have just been doing Irinotecan and Avastin since May. When on FOLFIRI I had to get Neulasta shots because my counts dropped so low I had to wait 2 extra weeks (4 weeks between treatments). My counts do ok w/o the 5-FU - I was able to drop the Neulasta. I tolerate chemo much better without 5-FU and without the Neulasta.

    The longer you are on chemo, the harder it is to bounce back. I don't know that there is anything in particular to deal with the fatigue other than to rest when your body says rest. I've had over 35 tx of chemo and I'm really wearing down. I just have to plan on one really tough week, and the next week being better.

    The main things to do are make sure she stays hydrated, and keeps protein intake up. Is she battling with the early or late onset diarrhea, or both? That can really wear you down. I found that we need to pay attention to the oncology dosing for Imodium, and NOT what it says on the bottle, when dealing with the Irinotecan diarrhea. I've finally gotten better in dealing with it, but it took me close to 20 tx to get there... Do not be afraid of taking too much Imodium if needed! I have to continue it for 24 hours after I think I am ok - taking it each time before I eat. I found bumping up my protein intake, doing away with whole grains (hard for me), peeling and de-seeding fruits and vegetables, eating Greek yogurt daily - are all things that helped a lot. I also drink Bolthouse Farms Green Goodness each day. My oncology dietician told me to get Naked Juice or similar because I should have no more then 4 ounces at a time if I'm having diarrhea issues. My juicer is too much of a pain to clean if I can only do 4 ounces. I like the Bolthouse Farms.

    Thanks Kathryn
    Printing yours out so my wife can read it. Your story is very similar, and it's good to know someone else is walking the same path.

    Best

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