Done with round 2 of folfox

Denise1966 Member Posts: 90
edited March 2014 in Colorectal Cancer #1
Hi everyone, Friday I got my pump taken off so round 2 is officially done. I felt a few more side effects this time, the cold from touching anything in the fridge, the tingling in my fingertips, the dreaded constipation and then the diarrhea after (this time I took immodium which helped control the diarrhea and gave me a decent nights sleep). My question is that everytime I shower I have a good amount of hair coming out, I know it may thin, but how much is normal to come out? my scalp also itches quite often. Is there anything I can or should do for this or is this all normal?
Thanks, Denise


  • kimby
    kimby Member Posts: 797
    round 2

    Sorry to say that this sounds normal. My hair really thinned on Folfox but only me and my hairdresser knew. ;) My hair is pretty thick so no one could tell how much it had thinned. I know many people really have a hard time with hairloss. I miss my colon more than I ever would my hair, but everyone is different.

    Find a new hairstyle (long with layers worked best for me) and some good winter hats/scarfs. Try not to stress too much about it. Most people are so worried about their own hair that they aren't paying much attention to anyone elses!

  • Madre
    Madre Member Posts: 123
    I just finished number 10
    I just finished number 10 and my hair thinned but I never had to wear a wig. It doesn't come out as much now but at the beginning I got handfuls. Then when I blow dried my hair it flew all over. I had my hair cut shoulder length layers. I know it's thin but everyone else says "Wow you never lost your hair", little do they know. Good luck.
  • claud1951
    claud1951 Member Posts: 424 Member
    Hi Denise,

    My hair REALLY thinned with Camptasar. So much so that I just buzzed it. I didn't loose it all nor did it come out in clumps. I would run my fingers through my hair and you could see the hair in my fingers (strands at a time).

    I was on Camptasar & 5fu pump for 8 rounds (prior to the on Oxil and xelda for 4 rounds) but I think the Camptasar is what did the hair loss for me. Actually, a lot of it fell out that month after I stopped chemo. It takes a couple of months to come back.

    Anyway..My hair came back curly (and so cute) and has a lot of body to it. I've heard (the gal that cuts my hair) says it might last a year, then hair goes back to (i don't know what?). Ha

    Yes..the cold sensations/tingling in fingers and toes are all part of the side effects.

    This is just part of the journey. What your saying sounds all normal side effects to me.

    You've always had a great attitude about all of this and I'm sure will continue to do so.

    Hey...just wear lots of make-up and BIG earrings! At least big earrings! hehehehehe.

    You'll look beautiful no matter what you do.

    Take care and hugs
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Hair loss and assorted side affects
    Hi Denise,

    Yup! Yup! Yup! Everything you mentioned is totally normal for being on these chemo drugs that we go on. Like the others said, I lost a lot of hair, but lucky for me 1) my hair is thick and 2) it seemed to come out evenly all over so there were no bald spots or big missing chunks. Like the others experienced, everyone would say, "You are soooo lucky! You didn't lose any of your hair!" I would just laugh and say, "Now that just goes to show how much you didn't look at me before I was DX'd, you ding-dong! I lost about 2/3 of my hair... you mean to tell me you have never noticed how thick my hair was before??

    Then, about 8 months after stopping the chemo, all my lost hair has grown back in, so I'm back to being a bush lady. Now people are saying, "WOW... it looks like your hair really liked the chemo! You have way more hair than you have ever had!" :::THWAP THWAP::

    I remember every time I'd shower, handfuls would come out... and I seriously thought I was going to have to shave it all off because there is no way that much could come out every day and it wouldn't start looking weird. But it never did.. which is really weird.

    As for the cold sensitivity with the Oxy... oooooh, that is what I hate the most! I like my water, milk, juice, whatever... COLD. I just can't stand room temperature drinks. Of course, that's impossible with the Oxy... so I have to force myself to drink room temp beverages. I drink a lot of tea on the oxy days.

    Anywho... hang in there. What you are experiencing is totally normal! I'm not sure where you live but if it's starting to get cooler because of Fall, the one bit of advice I have to give is when you go outside, if it is at all chilly, make sure you wrap a scarf around your neck to keep warm! I made that mistake once on a lovely March day (no scarf) and got about a block from home and my throat completely closed up and I thought I couldn't breathe. Of course I could but it was the most panicky feeling. Luckily a neighbour came by so she took my dog and walked me home (I couldn't talk) and as soon as we got into the building and out of the outside air, everything came back to normal. That was a scare, but it showed me just how powerful that oxipilatin can be.


  • lizbiz
    lizbiz Member Posts: 120
    Hi Denise,

    Hi Denise,

    Congratulations on finishing your 2nd round! It goes by quicker than you might think. I just completed my 6th round and I'm experiencing everything you are. I had a lot of hair going into treatment, so the thinning isn't too dramatic. But it definitely IS thinning. Every time I shower I get several quite large clumps. I had my hair cut chin-length before chemo started (and it hasn't grown at all since), but I'm going to be getting it cut very short as I'm sick of dealing with colostomy flange / bag changes have taken up the time I used to spend on my hair. To tell the truth, I kind of wish my hair had completely fallen would have just been one less thing I would have had to deal with, LOL!

    Good luck, fight hard!

  • polarprincess
    polarprincess Member Posts: 202
    Congrats on getting through your second round. I have finished 2 as well and am now on my way to radiation. I just wanted to pass on a tip about the hair loss thing- I am an ex cosmetologist and chemo patients used to swear by the Nioxin for noticeably thinning hair professional shampoo/conditioner, and so i did get some before i started treatment and I have had very minimal hair loss- maybe 6 strands a day more than i used to notice. ( Even prior to chemo i had some problems with hair shedding)
  • round 2
    Congrats to you! I received 10 Folfox treatments the first half of 2007 but remember the side effects as if they were yesterday. The thinning hair is really temporary and it comes back after treatment. There are some great volumizing products out there that may be used to compensate for the thinning. The one that I used (and still use)is made by Head Games and it's called "Messed Up Madness". The bigger concern for me was the sensitivity to cold in my hands. Mostly because I live in Wisconsin and I was going through chemo in winter. The first few treatments I wore gloves in the house for a couple of days after chemo. Then one of my chemo nurses suggested that I try the handwarmer packs that hunters use. Loved them!!! One would last 8 hours but they are hot at first so place a washcloth over it when you hold it. They're cheap and can be purchased at any sporting goods store. If you live in the midwest..they are everywhere...even gas stations have them.
    Good luck to you on your journey. It's surprising how quickly the time passes. Laugh and love! Sharon