FOLFIRI / Avastin

Foggy
Foggy Member Posts: 6
edited March 2014 in Colorectal Cancer #1
Hello, my wife has just started the FOLFIRI / Avastin regimen and is going for her second treatment tomorrow. It includes 5-FU and Irinotecan and she gets it every other week. She was on FOLFOX6 last year when it was only a stage III, it is now stage IV metastatic (ovary, abdomen, and liver). She is not on the Avastin yet becasue it is still too close to surgery, that part should start on the 3rd or 4th treatment. She handled the first treatment well, just some fatigue and some stomach cramping and diarrhea, I guess the ileostomy bag can be helpful in some situations. Last year, her hair thinned out a little but never fell out. We have been told it will probably be coming out this time due to the Irinotecan. We talked to our three young kids about it to prepare them if it does. Can anyone that has gone through it tell me when it typically falls out of it does? Also, where there any other crazy side effects that we should be preparing for?

Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #2
    lm in Round 2 and lost most of my hair
    but no other side effects .
    Best!
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #3
    pepebcn said:

    lm in Round 2 and lost most of my hair
    but no other side effects .
    Best!

    Howdy!
    I have taken the Folfiri/Avastin two seperate times now. The first time around I took for 6 months and my hair thinned pretty much but I did still have a thin layer left. The second time around I just had 2 rounds and lost it all..... skin head! Weird.... same dose..same stuff...different effect....go figure.....BUT it was highly successful for me ...wiped out almost 20 tumors in liver and lungs and put me NED for 7 months b4 recurrance in lungs..... awaiting PET/CT now to see exactly where I stand. You take care

    Jennie
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #4
    Don't know if there is a "typical"
    Here is my experience; I started losing my hair after my 2nd or 3rd treatment. I lost most of it + had my daughter cut what was left really short. After ~ 10 treatments, it started to grow back + is now at a not bad length (still short). I just wore scarves or hats even though I bought a wig. Some people don't lose any + some just have thinning. The only other side-effects for me have been fatigue + diarrhea. Please wish your wife well.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #5
    it varies
    Hi. My oncologist told me most of his patients loose about 50% of their hair after cycle #2 and 100% of their hair after cycle #5. But my understanding from this board is that it is pretty variable. I have just finished cycle #7. My hair has thinned but I still have it and it looks "OK". I already have a wig -- in readiness. I reckon I might have another week or two. But who knows. One certainly needs to be prepared to loose all hair on this drug (its the Irinotecan that' s responsible) but it can vary.

    I have definitely experienced diarrhea and stomach cramps. Controllable with meds but you need to be careful about the diarrhea as it can get severe. And some fatigue. So far it has all been very manageable for me. No other weird side effects. I have found it much easier to tolerate than FOLFOX (oxaliplatin side effects).

    The good news is that I had a scan after cycle #4 which showed my tumors are shrinking! Yea! I hope your wife has an equally wonderful response. (I'm also stage IV now).

    Sending all good wishes to you all.

    Tara

    ps I tried on my wig for my 19 year old son and asked him what he thought. He told me it looked like a wig. I told him he got a C+ for his response and that my job as a mother clearly was not yet finished! But jokes aside -- I think you are wise to prepare your kids and get things out in the open. My two (10 and 12 when I was diagnosed) have been terrific (other than that C+ response!).
  • Crow71
    Crow71 Member Posts: 679 Member
    #6
    mohawk!!
    I've had 2 treatments of folfori. My onc said the hair usually falls out after 3 or 4 treatments. I have a 4 year son and daughters age 8 and 11. I told them they could give me a mohawk. I may even dye it blue. (Blue is our colorectal cancer awareness color.) Might as well have a little fun.

    I haven't had any crazy side effects yet. Nothing like folfox. I have started drooling again.

    Take care - Roger
  • Runforlife
    Runforlife Member Posts: 10
    #7
    Welcome
    Hi there, just curious about the stole in the pic.
    I'm keeping you and your wife and family in my prayers.
  • luv3jay
    luv3jay Member Posts: 533 Member
    #8
    I've been on both, currently
    I've been on both, currently Folfiri for the second time...my haired thinned a little, but never fell out.
  • Foggy
    Foggy Member Posts: 6
    #9
    Runforlife said:

    Welcome
    Hi there, just curious about the stole in the pic.
    I'm keeping you and your wife and family in my prayers.

    Sash
    I had posted this in another thread when someone asked:

    Thank you all for the nice comments, I am very pround of my family. The picture was taken near St. Patrick's Day last year. We live in Savannah, GA; St. Patrick's Day is a big deal here. We have the second largest parade in the country after New York's (just over 300 entries). I am on the Parade Committee that helps put it on each year, that is where the sash comes from. It is a year round thing to get ready for each year. The picture was at one of the many events we hold leading up to the big day. Savannah has a HUGE Irish Catholic population and alwasy has. Pretty unique for the south, but it helps to make it a very special place also.

    Thank you for your prayers.
  • Foggy
    Foggy Member Posts: 6
    #10
    Crow71 said:

    mohawk!!
    I've had 2 treatments of folfori. My onc said the hair usually falls out after 3 or 4 treatments. I have a 4 year son and daughters age 8 and 11. I told them they could give me a mohawk. I may even dye it blue. (Blue is our colorectal cancer awareness color.) Might as well have a little fun.

    I haven't had any crazy side effects yet. Nothing like folfox. I have started drooling again.

    Take care - Roger

    Love it...
    Roger,
    Love the idea and attidude towards it. Take care.
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #11
    Foggy said:

    Sash
    I had posted this in another thread when someone asked:

    Thank you all for the nice comments, I am very pround of my family. The picture was taken near St. Patrick's Day last year. We live in Savannah, GA; St. Patrick's Day is a big deal here. We have the second largest parade in the country after New York's (just over 300 entries). I am on the Parade Committee that helps put it on each year, that is where the sash comes from. It is a year round thing to get ready for each year. The picture was at one of the many events we hold leading up to the big day. Savannah has a HUGE Irish Catholic population and alwasy has. Pretty unique for the south, but it helps to make it a very special place also.

    Thank you for your prayers.

    Irish! nice!
    l was studying there for two years, just a few miles from Dublin.Wonderful country and wonderful memories of youngness !
    Best to you both and don't get afraid about Folfiri easer than folfox!

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