Folfiri

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melo72
melo72 Member Posts: 36
edited March 2014 in Colorectal Cancer #1
Dear friends,
My mother needs to do chemo after resection!!!the multiple lessions in the liver just 25 days after resection!!!!!!
The Onc wants to put her on Folfiri and avastin...she has been on Folfox before but very bad experience and svere side effects.
I don't know if folfiri would be the same,she will be on operation room on 17th December for Carotid bypass and 21th December the first round of chemo in Italy,after that we will back home.
I think it would be better for her to be at home in this very difficult situation.
Just need to know any comments for the best taking care of her during the treatment and manage the side effect of Folfiri.
I still thinking what happened after the resection??!!The onc said maybe the stroke which has happened just 5 days after the operation has made the cancer aggressive...

Happy holiday for all of you friends

Melody

Comments

  • KATE58
    KATE58 Member Posts: 299
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    FOLFOX HAS OXYLAPLATIN,WHICH
    FOLFOX HAS OXYLAPLATIN,WHICH CAUSES THE PERIFERAL NEUROPATHY
    (HAND AND FEET PAIN, AVERSION TO COLD)
    FOLFIRI HAS IRINOTECAN,SHE'LL STILL GET NAUSEOUS,
    BUT NO NEUROPATHY
    I'VE HAD BOTH AND FOLFOX WAS WORSE.
    THERE ARE LOTS OF OTHERS WHO HAVE HAD BOTH,
    I'M SURE YOU'LL HEAR FROM THEM SOON
    GOOD LUCK
    GOD BLESS
    KATE
  • Shayenne
    Shayenne Member Posts: 2,342
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    KATE58 said:

    FOLFOX HAS OXYLAPLATIN,WHICH
    FOLFOX HAS OXYLAPLATIN,WHICH CAUSES THE PERIFERAL NEUROPATHY
    (HAND AND FEET PAIN, AVERSION TO COLD)
    FOLFIRI HAS IRINOTECAN,SHE'LL STILL GET NAUSEOUS,
    BUT NO NEUROPATHY
    I'VE HAD BOTH AND FOLFOX WAS WORSE.
    THERE ARE LOTS OF OTHERS WHO HAVE HAD BOTH,
    I'M SURE YOU'LL HEAR FROM THEM SOON
    GOOD LUCK
    GOD BLESS
    KATE

    Hello Melody!
    You have such a pretty name ;)

    I am on my 17th or 18th? (I lost count somewhere) of the Folfiri and Avastin, been on it since Feb of this year, and it has shrunk my tumors, but not enough to become operable still, I guess maybe the tumors are in places that are hard to get too, but hopefully we the avastin will keep them at bay and die off.

    I will say the 1st treatment was my worse, because I didn't know what to do, or what to expect, it wasn't bad getting the infusion itself, it was when I got home! Will you be on the 46 hour pump as well? if so, the day after you are disconnected, was the worse for me..it hit me hard, I couldn't move, drink anything or eat anything, I felt sooo sick, I didn't puke, but the nausea was overwhelming, and I was so tired! I thought if this cancer don't kill me, the chemo sure will, and scared at the thought of being like this every other week! Well, when the chemo nurse called me to check up on me for the first tx, I told her how I was, and she said I would never feel like that again...

    So the second time I went, and this is when they started me on Emend, and Dexamethasone,
    along with the Zofran, Compazine and Ativan that I had, and it was awesome! I haven't felt that sick since. It's a 3 day set of pills you take after you eaten something, and then takes an hour to kick in, but it helped me alot, so if you have some nausea, that's the best thing I took, along with a couple hits of maryjane :)

    I never lost ALL my hair, I had alot of hair thinning. I was losing clumps of hair in the shower, my onc said I wouldn't go bald, and I didn't, my scalp feels alot cooler without all that hair I had, but it is growing back now, on my expressions page, probably the second page of it, you will see a recent pic, and how my hair is now, I had it cut up to my shoulders because my hair was very long, and thick, and the weight may have also made it fall out more as well.

    Drink alot of fluids, stay hydrated! keep on top of the nausea pills every few hours, even if you don't feel sick, take it, or you will get sick, then it's too late to do anything about it. Saltines, soup, jello, popsicles, are all foods I ate when I wasn't really hungry, but had to get something down in me, and they didn't upset my stomach more..toast too!

    You may leak alot from the eyes, and runny nose, I feel like I yawn ALOT more now then ever! I don't know why, but even when I'm not tired, I'm yawning! LOL...

    You will feel alot of the fatigue after disconnection, maybe a day or two later, where you are too tired to do anything, and that's ok! just rest, and don't push yourself, you may feel like that for about 3-4 days till you start bouncing back to feeling like yourself, and you will bounce back.. you'll feel like you got run over by a truck, but that's normal, and you'll feel fine a few days later :)

    I probably forgot alot of things (chemo brain) but hope some of this helps you, anything you need to ask, just post away! We're here for you, and know what you're going through, I wish you luck, and you'll be in my prayers, if I can do it, you sure as heck can :)

    Hugsss!
    ~Donna
  • This comment has been removed by the Moderator
  • melo72
    melo72 Member Posts: 36
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    KATE58 said:

    FOLFOX HAS OXYLAPLATIN,WHICH
    FOLFOX HAS OXYLAPLATIN,WHICH CAUSES THE PERIFERAL NEUROPATHY
    (HAND AND FEET PAIN, AVERSION TO COLD)
    FOLFIRI HAS IRINOTECAN,SHE'LL STILL GET NAUSEOUS,
    BUT NO NEUROPATHY
    I'VE HAD BOTH AND FOLFOX WAS WORSE.
    THERE ARE LOTS OF OTHERS WHO HAVE HAD BOTH,
    I'M SURE YOU'LL HEAR FROM THEM SOON
    GOOD LUCK
    GOD BLESS
    KATE

    Dear kate,
    I read your posts

    Dear kate,

    I read your posts and I have found that you have had the second round of Folfiri yesterday.
    You are such a strong fighter and I realy cherish your passion for fighting the beast...
    The problem is my mother is not strong enough and she doesn't know about her stage 4 CC!!!
    we have made a story for her since the diagnosis in 2006.
    But now I'm thinking she should know and choose to fight...the treatment needs her acceptance and choosing to be a fighter..

    Am I right?My family are against me and they say if she knows,she gives up .

    ps.Sorry for my bad english...
    I pray for you every night and waiting to here in your posts which you are NED:)
    Love
  • melo72
    melo72 Member Posts: 36
    Options
    Shayenne said:

    Hello Melody!
    You have such a pretty name ;)

    I am on my 17th or 18th? (I lost count somewhere) of the Folfiri and Avastin, been on it since Feb of this year, and it has shrunk my tumors, but not enough to become operable still, I guess maybe the tumors are in places that are hard to get too, but hopefully we the avastin will keep them at bay and die off.

    I will say the 1st treatment was my worse, because I didn't know what to do, or what to expect, it wasn't bad getting the infusion itself, it was when I got home! Will you be on the 46 hour pump as well? if so, the day after you are disconnected, was the worse for me..it hit me hard, I couldn't move, drink anything or eat anything, I felt sooo sick, I didn't puke, but the nausea was overwhelming, and I was so tired! I thought if this cancer don't kill me, the chemo sure will, and scared at the thought of being like this every other week! Well, when the chemo nurse called me to check up on me for the first tx, I told her how I was, and she said I would never feel like that again...

    So the second time I went, and this is when they started me on Emend, and Dexamethasone,
    along with the Zofran, Compazine and Ativan that I had, and it was awesome! I haven't felt that sick since. It's a 3 day set of pills you take after you eaten something, and then takes an hour to kick in, but it helped me alot, so if you have some nausea, that's the best thing I took, along with a couple hits of maryjane :)

    I never lost ALL my hair, I had alot of hair thinning. I was losing clumps of hair in the shower, my onc said I wouldn't go bald, and I didn't, my scalp feels alot cooler without all that hair I had, but it is growing back now, on my expressions page, probably the second page of it, you will see a recent pic, and how my hair is now, I had it cut up to my shoulders because my hair was very long, and thick, and the weight may have also made it fall out more as well.

    Drink alot of fluids, stay hydrated! keep on top of the nausea pills every few hours, even if you don't feel sick, take it, or you will get sick, then it's too late to do anything about it. Saltines, soup, jello, popsicles, are all foods I ate when I wasn't really hungry, but had to get something down in me, and they didn't upset my stomach more..toast too!

    You may leak alot from the eyes, and runny nose, I feel like I yawn ALOT more now then ever! I don't know why, but even when I'm not tired, I'm yawning! LOL...

    You will feel alot of the fatigue after disconnection, maybe a day or two later, where you are too tired to do anything, and that's ok! just rest, and don't push yourself, you may feel like that for about 3-4 days till you start bouncing back to feeling like yourself, and you will bounce back.. you'll feel like you got run over by a truck, but that's normal, and you'll feel fine a few days later :)

    I probably forgot alot of things (chemo brain) but hope some of this helps you, anything you need to ask, just post away! We're here for you, and know what you're going through, I wish you luck, and you'll be in my prayers, if I can do it, you sure as heck can :)

    Hugsss!
    ~Donna

    Hi Donna,
    You are great and

    Hi Donna,

    You are great and amazing person,always positive.I'm so happy to found all of you and reading your posts always has given me ideas as a care giver...
    So the problem is she is so weak right now after 45 days of resection but the Onc has to start immidiately the treatment.
    we had to wait to do another operation on her carotid,need to be bypassed to give her brain more blood!!!the operation will be done tomorrow and then 4 days after the first round of chemo!!
    I don't know what will be happening but very scared of the side effects.she dosen't know about her stage 4 CC!!we always has made a story to give her a calmness but now I think she should know.
    any suggestion??I need to decide till 17 december to tell her or not?

    Huggs for you darling
    Melody(my name is mother gift to me)
  • Shayenne
    Shayenne Member Posts: 2,342
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    unknown said:

    This comment has been removed by the Moderator

    Hi Melody,,,,
    Is your mother well psychologically? I'd probably be upset is someone held back my diagnosis, and would want to know what I had, all the reason to fight more...Is she weak physically? you'd be surprised, I know older women who can run circles around me :)

    She'll be ok with the chemo, it doesn't hurt getting it. She has a port, right? The Folfiri plus Avastin has worked pretty well for me. amd it at least does't have some of the side effects that the Oxi brings.

    Hugsss!
    ~Donna
  • idlehunters
    idlehunters Member Posts: 1,787 Member
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    Shayenne said:

    Hi Melody,,,,
    Is your mother well psychologically? I'd probably be upset is someone held back my diagnosis, and would want to know what I had, all the reason to fight more...Is she weak physically? you'd be surprised, I know older women who can run circles around me :)

    She'll be ok with the chemo, it doesn't hurt getting it. She has a port, right? The Folfiri plus Avastin has worked pretty well for me. amd it at least does't have some of the side effects that the Oxi brings.

    Hugsss!
    ~Donna

    Hey Melody
    I am on the Folfiri with avastin also. I do the same regime as Donna with the pump for 2 days after treatment. I have had 8 treatments. I lost a lot of hair but still have enough to get by with no wig if I want. No body hair at all though! Only 1 time I got sick to my stomach. Thrush twice. I do have Neuropathy in my hands and feet. Someone said you don't get Neuropathy from Folfiri....I did and do still. hands and feet peel and numbness so bad in hands that I burnt finger in over and didn't even know it til I saw huge blister. Wierd!!! BUT... all in all... I think the pro's far outweigh the cons. At least for me they did. I went from a huge baseball size tumor in large intestine that perforated colon wall and started growing into the back of the abdomin wall. that was all successfully removed with surgery but by the time I started chemo it had spread to 4 mets in liver with one of those being large and pressing on a vessel.... also spread to lungs... 15 mets there spread all over the lungs and 3 were very large. Stage 4 of course.... BUT... after only 8 treatments of the Folfiri with Avastin I am now NED! So anything I have gone thru is WELL worth it. I am still doing treatments on a "wait and see" basis to make sure nothing is going to recur immediately as we all know is a strong possibility. However, I have made my mind up that I am not allowing that....no... not in this body... somebody gonna have to shoot me..or run me over...not dying this way. Doc says maybe 3 more treatments if CEA stays in normal limits (I went from 75 to my current 2.8) I am just glad this is the treatment that my Onc chose for me as it worked.... with God's hand. I know at first I was devasted with all the cancer stuff... denial...fear..crying... crying...crying.... but then.... this board made me realize I needed to get my head out of my butt and be strong. Not being a religious person... I had no faith. that changed as well. When you are facing death you will turn to anything...anyone...for help. Let me say again... GOD and this board....saved my life!!! I love them all!!! Please let me know if I can help you with anything...would be more than happy to.

    Peace........... Jennie
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Hello Melody
    Hi Melody,

    I am also on folfiri + avastin & have had great success so far. After 4 treatments the colon cancer was "not detectable" (no surgery) & 3 of the 4 spots on my liver had shrunken with the 4th not growing. I have now had 8 treatments.

    Donna gave a great desciption of what to expect. For me, the worst has been fatigue the day of treatment (they give me benadryl before the chemo + that exhausts me). I am also tired the day of my disconnect & for 1-2 days after. I try to take it easy on those days. I have also had hair loss but not complete, I bought a wig but I am not wearing it yet.

    All the best to you & your Mother!
  • JDuke
    JDuke Member Posts: 438
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    AnneCan said:

    Hello Melody
    Hi Melody,

    I am also on folfiri + avastin & have had great success so far. After 4 treatments the colon cancer was "not detectable" (no surgery) & 3 of the 4 spots on my liver had shrunken with the 4th not growing. I have now had 8 treatments.

    Donna gave a great desciption of what to expect. For me, the worst has been fatigue the day of treatment (they give me benadryl before the chemo + that exhausts me). I am also tired the day of my disconnect & for 1-2 days after. I try to take it easy on those days. I have also had hair loss but not complete, I bought a wig but I am not wearing it yet.

    All the best to you & your Mother!

    Hi Melody
    I don't really have anything to add as I have not had any of the treatments mentioned. I do want to let you know that I am sending positive thoughts your way and prayers for strength for your Mom and for you. I am so glad that we all have the smart, eloquent, caring, generous, courageous people on this board to turn to. I know like me you find comfort here when there is little elsewhere.
    Blessings,
    Joanne
  • melo72
    melo72 Member Posts: 36
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    AnneCan said:

    Hello Melody
    Hi Melody,

    I am also on folfiri + avastin & have had great success so far. After 4 treatments the colon cancer was "not detectable" (no surgery) & 3 of the 4 spots on my liver had shrunken with the 4th not growing. I have now had 8 treatments.

    Donna gave a great desciption of what to expect. For me, the worst has been fatigue the day of treatment (they give me benadryl before the chemo + that exhausts me). I am also tired the day of my disconnect & for 1-2 days after. I try to take it easy on those days. I have also had hair loss but not complete, I bought a wig but I am not wearing it yet.

    All the best to you & your Mother!

    Dear All,
    She has been

    Dear All,

    She has been transfered from ICU to the floor this morning.The Onc will start chemo tomorrow.just wish her luck for the first infusion of Folfiri.
    This round would be without Avastin because of the Bypass surgery but the next time they will.
    I will try ice in the mouth for her and also have asked the Onc for putting her on the top of the preventing and managing side effects.

    kisses & hugs for all of you
    Melody
  • grammadebbie
    grammadebbie Member Posts: 464
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    Praying
    Melody,
    Just wanted to let you know that I am praying for your family. This is a wonderful support group,we are a family and care deeply for one another. This is definately a soft place to land. I know that you will receive great information and comfort here. Please let us know how things are going.

    God Bless You,

    Debbie (gramma)

    As Donna said above...Pot is extremely effective in dealing with nausea and other symptoms. In California it is legal for medical use but I know alot of people in other states that have been able to get it. I used all of the drugs but this was the only thing that worked immediately for nausea.
  • KATE58
    KATE58 Member Posts: 299
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    melo72 said:

    Dear kate,
    I read your posts

    Dear kate,

    I read your posts and I have found that you have had the second round of Folfiri yesterday.
    You are such a strong fighter and I realy cherish your passion for fighting the beast...
    The problem is my mother is not strong enough and she doesn't know about her stage 4 CC!!!
    we have made a story for her since the diagnosis in 2006.
    But now I'm thinking she should know and choose to fight...the treatment needs her acceptance and choosing to be a fighter..

    Am I right?My family are against me and they say if she knows,she gives up .

    ps.Sorry for my bad english...
    I pray for you every night and waiting to here in your posts which you are NED:)
    Love

    I have been on all kinds of
    I have been on all kinds of chemo- folfox, avastin,xeloda,
    erbitux,and now folfiri (irinotecan).Probably some I am forgetting at the moment.
    So far the worse side effects came from folfox,
    with erbitux taking a distant second.
    I am stage IV and have been for over 4 yrs.
    I am in much better health now ,than I was 3 or 4 yrs ago.
    the last 2 yrs I've been in pretty good health( except for this cancer)

    You know your mother and how she handles things,I have no idea.
    speaking just for me,when I ask a question, I expect total honesty,
    just tell me the truth.

    4 1/2 yrs ago,When I was in the hospital for 2 months so sick,I could barely
    stand,they thought I would only live another 3 months.
    They did not tell me this ,I did not ask. I don't know how I would have felt if they told me that,I don't know if I would have gotten depressed or not. I do know when they finally told me last year,I was mad as heck that they did not tell me,I felt it is MY life not theirs.
    When I started to get better ,they could not believe it,
    when I went into my first remission,they were amazed.

    NOW ,I always ask the questions and they always tell me the truth.
    If some one had told me 5 yrs ago ,before this started that I would go thru this,
    I would have said" no,no I am not strong enough to do it, I could NEVER do it!!"
    But,when you need the strength,IT FINDS YOU !!
    Ther is always hope!!
    I can't tell you what you should tell your mother,
    I can only say what I would want to be told.

    Good luck to you
    God bless
    kATE