Losing my hair

Ruthmomto4 said:

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 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. 

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

Annabelle41415 said:

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 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.

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 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 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 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.