would like info on folfiri with avastin

k44454445
k44454445 Member Posts: 494
in Colorectal Cancer #1
i want to again thank everyone for the support i was given in july when i was devastated after getting the news from the oncologist in late june (my oncologist was on vaca). i have since seen my oncologist, a gyn oncol, went to a surg oncol & oncol at the james center at ohio state university & a surg oncol at university of cincinnati,ohio. all were shocked that the first oncol said i had 3 months or maybe 1 year to live. they all said i am treatable & have hopes of remission at some point. also the first oncol rx the wrong chemo! today i had my first folfiri with avastin. i had 4 hrs infusion at the clinic & am now on the 46hr take home pump. i will do chemo everyother week for 6 months then be evaluated for hipec surg. i had folfox6 the first time so i would like some info about fulfire & avastin. i have read the handouts but i feel there are much better tips & info on here. thanks again for the support that is given on here & it is wonderful to read positive news!!!
judy

Comments

  • k44454445
    k44454445 Member Posts: 494
    #2
    folfiri

    folfiri
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #3
    k44454445 said:

    folfiri

    folfiri

    Hi Judy I was six months on fofiri and achieved a complete
    Response last year so it worked very well for me!
    Main symptoms use to be diarreha , al severe ( complete ) loose of hair, and just a bit of hand&foot syndrome ,all togeder very manageable for me , much more than folfox.
    Hope it helped!
    Hugs.
  • k44454445
    k44454445 Member Posts: 494
    #4
    pepebcn said:

    Hi Judy I was six months on fofiri and achieved a complete
    Response last year so it worked very well for me!
    Main symptoms use to be diarreha , al severe ( complete ) loose of hair, and just a bit of hand&foot syndrome ,all togeder very manageable for me , much more than folfox.
    Hope it helped!
    Hugs.

    thank you. glad to hear it
    thank you. glad to hear it worked for you! i appreciate the info on side effects.
    a big hug for you
    judy
  • taraHK
    taraHK Member Posts: 1,952 Member
    #5
    my experience
    I was on this combination. Everyones experience is different. Here was mine: 5FU just caused the "usual" side effects of mild nausea and mild fatigue. Irinotecan (the "iri" in Folfiri) caused hair loss, as Pepe said (pretty complete -- be prepared for that). And, like Pepe, also diarrhea. Mine was not too severe. I had to take Immodium -- in quite serious doses -- several times, but not always. Others on this board I know have had more severe diarrhea. I have no side effects from Avastin. Others have high blood pressure (so that needs to be monitored carefully) and/or issues with bleeding/clotting.

    I wish you all the best on this new combo -- with minimal side effects!

    Tara
  • Connie43
    Connie43 Member Posts: 44
    #6
    folfiri with avastin
    I had this and had a severe bad reaction due to the Avastin. Call your dr. at the very first sign of ANYTHING different. I started having back pain 3 days after treatment and my husband said I should not have moved the couch. No, the avastin had stopped all blood flow to my colon and intestine, and I didn't call the dr. for 10 days. I am very mad I can't have it, as it has helped so many others. It took out half my hair, but I was fortunate to get a wig from the American Cancer Society. My hair is back and the folfiri alone is no longer effective, so I started erbitux---today. Good luck to you and have a fun week. I almost forget I have cancer when I am shopping at my favorite thrift store or with my grand children. Do something you love every day. I started taking painting lessons from a lady that started painting at age 70. I bought a violin, I have never played a string instrument. I overlook several of my husbands bad habits- like leaving dirty laundry where it doesn't belong, I jut pick it up and throw it in the washer. These are a few of the ways I handle living with cancer. I remind young people, life is not fair, and then listen to their story. Get alot of sleep, that is a great benefit in your recovery.
  • druidshadow
    druidshadow Member Posts: 85
    #7
    k44454445 said:

    folfiri

    folfiri

    i too have been
    i too have been able to manage the side effects my new onc actually lowered it cause i was super sensitive to the fu5 part of the mix. only bad side effect i have had from the avastin is issues with my kidneys high proteins trying to shut them down but i was put on a blood pressure med to help with it.
    john
  • k44454445
    k44454445 Member Posts: 494
    #8
    Connie43 said:

    folfiri with avastin
    I had this and had a severe bad reaction due to the Avastin. Call your dr. at the very first sign of ANYTHING different. I started having back pain 3 days after treatment and my husband said I should not have moved the couch. No, the avastin had stopped all blood flow to my colon and intestine, and I didn't call the dr. for 10 days. I am very mad I can't have it, as it has helped so many others. It took out half my hair, but I was fortunate to get a wig from the American Cancer Society. My hair is back and the folfiri alone is no longer effective, so I started erbitux---today. Good luck to you and have a fun week. I almost forget I have cancer when I am shopping at my favorite thrift store or with my grand children. Do something you love every day. I started taking painting lessons from a lady that started painting at age 70. I bought a violin, I have never played a string instrument. I overlook several of my husbands bad habits- like leaving dirty laundry where it doesn't belong, I jut pick it up and throw it in the washer. These are a few of the ways I handle living with cancer. I remind young people, life is not fair, and then listen to their story. Get alot of sleep, that is a great benefit in your recovery.

    thank you everyone for some
    thank you everyone for some valuable info. i am day one off the pump & so far no side effects but i feel like crap! but i know tomorrow will be much better!!! best to everyone
    judy
  • luvinlife2
    luvinlife2 Member Posts: 172 Member
    #9
    Hi Judy :)
    I've had 61 infusions of irinotecan/avastin, 32 with 5fu and 29 with xeloda. I've never lost all my hair although I came close once (I've taken a couple of chemo breaks). I found the xeloda easier to tolerate than the 5fu but others find the opposite works better. The 5fu gave me mouthsores so the best prevention I found was to suck on ice during the 5fu bolus. It really kept my down. Keep your mouth very clean. Rinse several times a day with water and baking soda. Get yourself some toothpaste from the health store that won't irritate your mouth. Ask your onc for a special mouthwash (prescrip) designed for mouthsores if they appear.

    I think it's horrible that your onc gave you a time frame on your life. My first onc did that as well. Guess what? He had no idea and neither does yours. Mine told me he would try to keep me alive for 10 months on chemo. In Sept that initial conversation will be 4 years old. What a stupid Dr. he is...lol!

    I've had a partial remission but never a complete one. That doesn't mean you can't have a complete remission. We all have different responses. I am still doing well though. People are shocked when they find out I have stage 4 colon cancer with mets in my liver and lungs. It is possible to have a good life while still undergoing treatments.

    All the best to you :)
  • YoVita
    YoVita Member Posts: 590 Member
    #10
    Connie43 said:

    folfiri with avastin
    I had this and had a severe bad reaction due to the Avastin. Call your dr. at the very first sign of ANYTHING different. I started having back pain 3 days after treatment and my husband said I should not have moved the couch. No, the avastin had stopped all blood flow to my colon and intestine, and I didn't call the dr. for 10 days. I am very mad I can't have it, as it has helped so many others. It took out half my hair, but I was fortunate to get a wig from the American Cancer Society. My hair is back and the folfiri alone is no longer effective, so I started erbitux---today. Good luck to you and have a fun week. I almost forget I have cancer when I am shopping at my favorite thrift store or with my grand children. Do something you love every day. I started taking painting lessons from a lady that started painting at age 70. I bought a violin, I have never played a string instrument. I overlook several of my husbands bad habits- like leaving dirty laundry where it doesn't belong, I jut pick it up and throw it in the washer. These are a few of the ways I handle living with cancer. I remind young people, life is not fair, and then listen to their story. Get alot of sleep, that is a great benefit in your recovery.

    Love your suggestions
    on living with cancer day to day. Great ideas to do something you love every day.
  • TheDirtyColon
    TheDirtyColon Member Posts: 13
    #11
    luvinlife2 said:

    Hi Judy :)
    I've had 61 infusions of irinotecan/avastin, 32 with 5fu and 29 with xeloda. I've never lost all my hair although I came close once (I've taken a couple of chemo breaks). I found the xeloda easier to tolerate than the 5fu but others find the opposite works better. The 5fu gave me mouthsores so the best prevention I found was to suck on ice during the 5fu bolus. It really kept my down. Keep your mouth very clean. Rinse several times a day with water and baking soda. Get yourself some toothpaste from the health store that won't irritate your mouth. Ask your onc for a special mouthwash (prescrip) designed for mouthsores if they appear.

    I think it's horrible that your onc gave you a time frame on your life. My first onc did that as well. Guess what? He had no idea and neither does yours. Mine told me he would try to keep me alive for 10 months on chemo. In Sept that initial conversation will be 4 years old. What a stupid Dr. he is...lol!

    I've had a partial remission but never a complete one. That doesn't mean you can't have a complete remission. We all have different responses. I am still doing well though. People are shocked when they find out I have stage 4 colon cancer with mets in my liver and lungs. It is possible to have a good life while still undergoing treatments.

    All the best to you :)

    Initial prognosis
    You know, mine did too! My first prognosis went like this... "Oh, John John John...." I guess they have to give you the status quo type of answer at the beginning which just scares the crap out of people, and it did me.. WOW!

    God bless you all!
  • k44454445
    k44454445 Member Posts: 494
    #12
    luvinlife2 said:

    Hi Judy :)
    I've had 61 infusions of irinotecan/avastin, 32 with 5fu and 29 with xeloda. I've never lost all my hair although I came close once (I've taken a couple of chemo breaks). I found the xeloda easier to tolerate than the 5fu but others find the opposite works better. The 5fu gave me mouthsores so the best prevention I found was to suck on ice during the 5fu bolus. It really kept my down. Keep your mouth very clean. Rinse several times a day with water and baking soda. Get yourself some toothpaste from the health store that won't irritate your mouth. Ask your onc for a special mouthwash (prescrip) designed for mouthsores if they appear.

    I think it's horrible that your onc gave you a time frame on your life. My first onc did that as well. Guess what? He had no idea and neither does yours. Mine told me he would try to keep me alive for 10 months on chemo. In Sept that initial conversation will be 4 years old. What a stupid Dr. he is...lol!

    I've had a partial remission but never a complete one. That doesn't mean you can't have a complete remission. We all have different responses. I am still doing well though. People are shocked when they find out I have stage 4 colon cancer with mets in my liver and lungs. It is possible to have a good life while still undergoing treatments.

    All the best to you :)

    luvinlife2
    i admire your positive outlook considering how many tx you have had! how wonderful that the first onc was wrong! thank you for the tips. i will be praying for a complete remission for you.
    judy
  • k44454445
    k44454445 Member Posts: 494
    #13
    TheDirtyColon said:

    Initial prognosis
    You know, mine did too! My first prognosis went like this... "Oh, John John John...." I guess they have to give you the status quo type of answer at the beginning which just scares the crap out of people, and it did me.. WOW!

    God bless you all!

    TheDirtyColon
    yes i was shocked to say the least at the time frame i was first told. thank heavens we have choices of docs!
    goodluck to you
    judy
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #14
    Judy
    As the others said, keep an eye on the blood pressure (I had high blood pressure before Avastin and nothing changed while on it)and make sure that they do the urine tests to watch out for high protein in the urine. If they detect that, then they do a 24 hour urine test, I had to have that once, but it came back good to go, (so if you do have to do the 24 test, just want you to know it doesn't necessarily mean it's going to be bad news)I was on Avastin long term until had to have a stent put in an artery(family genes, my younger brother has 9 stents)and put on blood thinners. As for the folfire, I was on Xeloda and didn't have side affects from that, so can't help you there.
    Let the shrinking of tumors begin!!!
    Winter Marie
  • k44454445
    k44454445 Member Posts: 494
    #15
    herdizziness said:

    Judy
    As the others said, keep an eye on the blood pressure (I had high blood pressure before Avastin and nothing changed while on it)and make sure that they do the urine tests to watch out for high protein in the urine. If they detect that, then they do a 24 hour urine test, I had to have that once, but it came back good to go, (so if you do have to do the 24 test, just want you to know it doesn't necessarily mean it's going to be bad news)I was on Avastin long term until had to have a stent put in an artery(family genes, my younger brother has 9 stents)and put on blood thinners. As for the folfire, I was on Xeloda and didn't have side affects from that, so can't help you there.
    Let the shrinking of tumors begin!!!
    Winter Marie

    Winter Marie,
    thank you for
    Winter Marie,
    thank you for informing me about the urine tests. i will make sure they do not forget to check. yes, let the shrinking begin!!!
    judy
  • Katherine85
    Katherine85 Member Posts: 11
    #16
    Folfiri and Avastin
    Hi Judy:

    I am newly dx with Stage IV colon cancer and my oncologist has me on Folfiri and Avastin. So far the nausea and diarrhea have been the worst symtoms. I have also had headaches, which they said could happen. I have also been experiencing extreme muscle spams and pain in my neck, shoulders and down my left arm. One of the medications they have me on for nausea said it could cause muscle spams so I have stopped taking that one. So far the cramps have stopped but I will see when I get my next dose of chemo what happens. I also have MS so I am in contact with my neurologist at the same time.

    So far I have not lost my hair but this is only been my second dose. I am not sure how soon it starts to fall out. I would like to know so I can prepare myself for it. Do you or anyone else know?

    I am happy for you on the good news!

    Katherine
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #17
    FOLFIRI & Avastin
    Everyone reacts differently, but for me, FOLFIRI was much more tolerable than FOLFOX. I did 14 months with Avastin every cycle but one (when a snowstorm kept the delivery truck from arriving). But my FOLFIRI end of things changed a bit. It worked really well for me, so we tried dropping the Irinotecan. I progressed again, so we added it back in. Things got under control so I asked to try w/o the 5-FU. That went really well.

    Avastin - especially after many cycles, expect nose bleeds - that was the only bad side effect I got from it. Cuts or sores took a long time to heal (popped blisters on my toes took over a month). My blood pressure is unusually low, so it only raised me to normal.

    Irinotecan, a.k.a. "I run to the can." It earned that nickname. You can get both early and late onset diarrhea, or just one or the other, or if you get very lucky, neither. This is one of the most common side effects. VERY IMPORTANT - if you get the severe diarrhea do not pay attention to Imodium box directions - use the oncology directions of taking 2 right away and then 1 every 2 hours. I found that even after I was ok for 24 hours, I needed to continue taking one right before I ate for the next day or two. If you have severe cramping and/or diarrhea during infusion, speak up - they can give you atropine which helps a lot. The other common side effect (other than nausea and diarrhea) is hair loss. Almost everyone has severe thinning or total loss on this drug. It isn't really that big a deal to lose it. The fear of losing it is worse. This summer I am missing my bald head in this extreme heat! Some less common side effect that I got were excessive saliva and a runny nose every time I ate or drank anything. It started first at infusion without eating or drinking - just poured out. For 14 months I kept Cottonnelle and Puffs in business! If you have the saliva problem there is something they can give you - atropine drops under the tongue can help - chewing gum can help too.

    I did notice the nausea was different with FOLFIRI than FOLFOX. On FOLFOX I had to eat bland things, but on FOLFIRI I craved strong flavors. The great thing is the really awful metallic issues weren't a problem (it is that platinum base that gets you in oxy). Also no cold sensitivity or neuropathy.

    I hope you don't have much trouble with side effects and the combo works well for you.

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