Losing my hair

abita
abita Member Posts: 1,114 Member
edited July 2019 in Colorectal Cancer #1

My hair thinned on folfox and folfiri. I was not prepared for all my hair to fall out on erbutix and irinotecan. I am so angry that my oncologist didn't warn me especially since I specifically said when looking at options I did not want to choose one that would make me lose all my hair. I am so angry right now. And to make things worse, it is the oldest long hair that is falling out first rather than the new growth that has been growing back from breaks in chemo.

«13

Comments

  • Butt
    Butt Member Posts: 352

    Oncologists not always know if the hair will fall out on a certain med. The same with diarrhe, nausea and etc.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    I am so sorry!

    its the irinotecan that does it, which is why it fell out on Fofiri. He should have told you. maybe It will just thin a bit and not fall out in large amounts. 

  • abita
    abita Member Posts: 1,114 Member

    I am so sorry!

    its the irinotecan that does it, which is why it fell out on Fofiri. He should have told you. maybe It will just thin a bit and not fall out in large amounts. 

    I thought it might be the

    I thought it might be the irinotecan, because I lost about two thirds of my hair on it last year. He should have told me, and maybe if he spent more htan 10 minutes with me... I think the problem is that I had lost so much before, so can't really lose much more. Thanks, for confirming my thoughts because at least, at the very least, I can feel better if I get to where I just am on maintenance with the erubitix. I know all women love their hair, but I have always tied my identity to mine, so definitely a huge loss. It is, what is barely left of it, waist length, except for the new growth that is about 3 or 4 inches. It is falling out in large amounts though. For the past 5 or so days, about 4 or 5 handfuls a day. 

  • JanJan63
    JanJan63 Member Posts: 2,478
    Oh, I'm sorry. That must be

    Oh, I'm sorry. That must be traumatic. I remember wondering if my hair would fall out when I was on chemo for the first time and thinking I'd get a rocking wig if it did but I thinkit would have been a horrifying experience. And good wigs are really expensive.

    Ay one point after I got out of the hospital from my PE I lost a lot of hair, it really thinned out. I thought it was okay and nobody noticed and then I saw a picture of myself from behind and just about had a heart attack, it looked so bad. So I had it cut fairly short.

    Good luck with it.

    Jan 

  • Canadian Sandy
    Canadian Sandy Member Posts: 725 Member
    I lost my hair after Having

    I lost my hair after having one treatment of irinotecan. Wore a cute slouchy hat from Headcovers. I missed my hat when hair grew back in. haha. My hair was way thicker when it grew back!

  • Butt
    Butt Member Posts: 352

    Mine started to fall out from FU5.

  • abita
    abita Member Posts: 1,114 Member
    Oh man. Oncologists get super

    Oh man. Oncologists get super dire sounding with you if they think you are going to stop chemo. I asked his nurse how important the irinotecan was to my treatment. He was told I was quitting chemo because of my hair. 

  • KarenMG
    KarenMG Member Posts: 109
    I'm so sorry abita. I just

    I'm so sorry abita. I just found out that the ironetecan caused all the hair loss and that is one of the major reasons I decided against it, plus it can cause intractable diarrhea that can put you in the hospital. So for palliative use on me I said it was not worth all that. I understand your anger. I'm glad I had a second sense about that stuff and ended up asking more questions.

    Again, so sorry!

    Karen

  • abita
    abita Member Posts: 1,114 Member
    KarenMG said:

    I'm so sorry abita. I just

    I'm so sorry abita. I just found out that the ironetecan caused all the hair loss and that is one of the major reasons I decided against it, plus it can cause intractable diarrhea that can put you in the hospital. So for palliative use on me I said it was not worth all that. I understand your anger. I'm glad I had a second sense about that stuff and ended up asking more questions.

    Again, so sorry!

    Karen

    I am not getting the diarrhea

    I am not getting the diarrhea, and the fatigue isn't even that bad. I do have about 6 pimples. The hair loss though is breaking me.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Sorry

    That has to be so devestating.  I've got thin hair to begin with and during my treatment it thinned more, but never came out.  Getting big globs of hair at one time has to be very frightening and can understand why you would be so upset with your doctor.  My doctor didn't tell me half the side effects of my treatment and remember me signing some form giving them the right to do treatment.  It's too bad doctors can't be more upfront about things like that.  If they were going through it, they definitely would be concerned about it too.  Hopefully after treatment it will come in much better.

    Kim

  • BGNor
    BGNor Member Posts: 30
    abita said:

    I am not getting the diarrhea

    I am not getting the diarrhea, and the fatigue isn't even that bad. I do have about 6 pimples. The hair loss though is breaking me.

    My doc was clear about hair

    My doc was clear about hair loss. It will go! And it did - not all, but most of it. I never had diarrhea either, but rather got constipation the first few days after treatment. But that was ok to fix with other remedies. I got off treatment 1 month ago and the hair is on its way back. I was a short haired guy anyway, so it didn't bother me much. All in all the treatment went fine with one exception - I got the flu and was in hospital for a few days. So, be careful and keep hands clean and try to avoid getting sick. 

    Best wishes, Bjorn

  • abita
    abita Member Posts: 1,114 Member
    BGNor said:

    My doc was clear about hair

    My doc was clear about hair loss. It will go! And it did - not all, but most of it. I never had diarrhea either, but rather got constipation the first few days after treatment. But that was ok to fix with other remedies. I got off treatment 1 month ago and the hair is on its way back. I was a short haired guy anyway, so it didn't bother me much. All in all the treatment went fine with one exception - I got the flu and was in hospital for a few days. So, be careful and keep hands clean and try to avoid getting sick. 

    Best wishes, Bjorn

    I changed my photo to the pic

    I changed my photo to the pic my hairdresser took of my hair at the beginning of chemo back in 2017. Up until this bout, the patches had started to grow back and it still looked fairly good. I dwon't be getting off chemo any time soon though, although I am praying they find animmunotherapy trial for me at some point so my hair can return. I think at this point, I could have handled this better but I had really been in denial that I would keep a decent head of hair until my class reunion in October. 

    You know, on folfox, those last few months, I had to skip a lot of weeks due to abysmmally low WBC counts. Yesterday was my 3rd round of this treatment, and my WBC count was higher than it was when they checked before the last infusion. I know I have to be so careful. 

  • abita
    abita Member Posts: 1,114 Member

    Sorry

    That has to be so devestating.  I've got thin hair to begin with and during my treatment it thinned more, but never came out.  Getting big globs of hair at one time has to be very frightening and can understand why you would be so upset with your doctor.  My doctor didn't tell me half the side effects of my treatment and remember me signing some form giving them the right to do treatment.  It's too bad doctors can't be more upfront about things like that.  If they were going through it, they definitely would be concerned about it too.  Hopefully after treatment it will come in much better.

    Kim

    I showed him a picture of a

    I showed him a picture of a handful of hair. He asked, are you losing that each day. I said no, 2 to 4 times a day for the last week. He was visibly shocked. I think I caught him off guard. I have an appt for a wig consultation Friday. This would just be for events I would feel really awkward without hair, like my reunion. For day to day, I ordered about 10 different beanies. I have to be honest, it is the reunion back home that has me the most upset. I am also hoping how adamantly he told me I wouldn't make it if I stopped this chemo was just him "scaring me straight" since he was very optimistic always before. He did say he is and most likely will find an immunotherapy trial for me at some point. And he even said he is encouraged that I am so distraught about my hair because that tells him I must be feeling okay. And that is kind of true. I feel way better than I did on FOLFOX. ANd I realize to him it must seem frustrating that I am so distraught over my hair, when I take neuropathy in my feet and one finger in stride.

  • abita
    abita Member Posts: 1,114 Member

    I lost my hair after Having

    I lost my hair after having one treatment of irinotecan. Wore a cute slouchy hat from Headcovers. I missed my hat when hair grew back in. haha. My hair was way thicker when it grew back!

    I went way overboard. I work

    I went way overboard. I work from MSK to save my PTO days. Since I had my laptop, I ordered probably 10 or 15 lightweight beanies to wear for everyday. I live in Manhattan, so guessing people will think I am a hipster.  I did schedule a consultation for a wig at a high end place that knows how to handle chemo hair loss. I will probably wait until I get closer to my reunion to see if I still want it as the more realistic ones are very expensive. But, by getting the consultation now. I can have it all planned out so know exactly what to get if the time comes. I am still in denial a bit and somehow praying that I will have enough of my own hair left, and that I will switch to trial or something so hair is stronger and can get extensions. I say denial, but I do know that is not going to happen :)

  • abita
    abita Member Posts: 1,114 Member
    JanJan63 said:

    Oh, I'm sorry. That must be

    Oh, I'm sorry. That must be traumatic. I remember wondering if my hair would fall out when I was on chemo for the first time and thinking I'd get a rocking wig if it did but I thinkit would have been a horrifying experience. And good wigs are really expensive.

    Ay one point after I got out of the hospital from my PE I lost a lot of hair, it really thinned out. I thought it was okay and nobody noticed and then I saw a picture of myself from behind and just about had a heart attack, it looked so bad. So I had it cut fairly short.

    Good luck with it.

    Jan 

    Good wigs are really

    Good wigs are really expensive. I am going for the consultation for one, to get it all planned, but probably won't pull the trigger until I have something planned where I would really want to have hair to blend in. I wish money were no object, I would get a black one and one in my current color. I had long black hair in my late 20s and early 30s, and LOVED it. Not for both, but for the one in my current color, I imagine it will be one of those, well if I am not going to get to my golden years, might as well buy the wig.

  • JanJan63
    JanJan63 Member Posts: 2,478
    abita said:

    I showed him a picture of a

    I showed him a picture of a handful of hair. He asked, are you losing that each day. I said no, 2 to 4 times a day for the last week. He was visibly shocked. I think I caught him off guard. I have an appt for a wig consultation Friday. This would just be for events I would feel really awkward without hair, like my reunion. For day to day, I ordered about 10 different beanies. I have to be honest, it is the reunion back home that has me the most upset. I am also hoping how adamantly he told me I wouldn't make it if I stopped this chemo was just him "scaring me straight" since he was very optimistic always before. He did say he is and most likely will find an immunotherapy trial for me at some point. And he even said he is encouraged that I am so distraught about my hair because that tells him I must be feeling okay. And that is kind of true. I feel way better than I did on FOLFOX. ANd I realize to him it must seem frustrating that I am so distraught over my hair, when I take neuropathy in my feet and one finger in stride.

    Immunotherapy. For the record

    Immunotherapy. For the record, it made me grow a moustache and beard while I was on it, then they fell out and so sis all of my eyelashes and most of my eyebrows. Not a big deal when my face looks like a pizza from the immunotherapy but it continues to happen. I haven't been on it since March and right now I have about 5 eyelashes on each eye. The moustache and beard weren't full ones like guys get but were definitely there and visible and grew every fast. I had to leave most of it because of the sores on my face. 

    Yes, it's better than losing my hair but still not fun. Your hair is GORGEOUS in your picture. Yes, that would be really hard. I'm sorry you're dealing with this.

    Jan 

  • abita
    abita Member Posts: 1,114 Member
    JanJan63 said:

    Immunotherapy. For the record

    Immunotherapy. For the record, it made me grow a moustache and beard while I was on it, then they fell out and so sis all of my eyelashes and most of my eyebrows. Not a big deal when my face looks like a pizza from the immunotherapy but it continues to happen. I haven't been on it since March and right now I have about 5 eyelashes on each eye. The moustache and beard weren't full ones like guys get but were definitely there and visible and grew every fast. I had to leave most of it because of the sores on my face. 

    Yes, it's better than losing my hair but still not fun. Your hair is GORGEOUS in your picture. Yes, that would be really hard. I'm sorry you're dealing with this.

    Jan 

    I thought you had said you

    I thought you had said you were on a targeted drug, not immunotherapy. My targeted drug has the pimples side effect, but I am practively taking an antibiotic and using creme de la mer to get rid of the red that hurt.

  • abita
    abita Member Posts: 1,114 Member
    JanJan63 said:

    Immunotherapy. For the record

    Immunotherapy. For the record, it made me grow a moustache and beard while I was on it, then they fell out and so sis all of my eyelashes and most of my eyebrows. Not a big deal when my face looks like a pizza from the immunotherapy but it continues to happen. I haven't been on it since March and right now I have about 5 eyelashes on each eye. The moustache and beard weren't full ones like guys get but were definitely there and visible and grew every fast. I had to leave most of it because of the sores on my face. 

    Yes, it's better than losing my hair but still not fun. Your hair is GORGEOUS in your picture. Yes, that would be really hard. I'm sorry you're dealing with this.

    Jan 

    And thanks. I loved my hair

    And thanks. I loved my hair so much.

  • Butt
    Butt Member Posts: 352

    Honestly, when it comes to cancer business I don’t care too much about hair.

  • PamRav
    PamRav Member Posts: 337 Member
    Me too

    So sorry about your hair loss. It’s traumatic losing your hair, no doubt about it. My experience:   I lost a great deal of hair on the irenotecan   I ended up buying 4 wigs none of which i loved.  i played with different colors and styles, tried to have some fun with it. Even gave them names.  I bought most online and found they were just as nice as the first expensive one that i bought at a shop.   Eventually. started wearing caps, and scarves and liked that look much more.   At the end of that treatment i had what was left cut into a pixie cut, which i liked so much that ive stuck with it!  My  new hairgrowth is straight and a thinner texture.