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Losing my hair

abita's picture
abita
Posts: 658
Joined: Dec 2017

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.

Butt's picture
Butt
Posts: 325
Joined: May 2018

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

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

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's picture
abita
Posts: 658
Joined: Dec 2017

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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 

abita's picture
abita
Posts: 658
Joined: Dec 2017

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.

Canadian Sandy's picture
Canadian Sandy
Posts: 520
Joined: Jul 2016

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!

abita's picture
abita
Posts: 658
Joined: Dec 2017

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 :)

Butt's picture
Butt
Posts: 325
Joined: May 2018

Mine started to fall out from FU5.

abita's picture
abita
Posts: 658
Joined: Dec 2017

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's picture
KarenMG
Posts: 109
Joined: Jun 2017

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's picture
abita
Posts: 658
Joined: Dec 2017

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.

BGNor's picture
BGNor
Posts: 28
Joined: Feb 2018

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's picture
abita
Posts: 658
Joined: Dec 2017

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. 

Canadian Sandy's picture
Canadian Sandy
Posts: 520
Joined: Jul 2016

I did get the diarrhea and in my opinion it was worse than the hair loss. Spent 3 weeks in the hospital as lost my electrolytes.

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

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

abita's picture
abita
Posts: 658
Joined: Dec 2017

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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's picture
abita
Posts: 658
Joined: Dec 2017

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.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

When I get the immunotherapy they give me an Rx for antibiotics, too, but only for the first few weeks. Those pimlples are a huge pain in the butt. They get to be so many that they're really close to gether and almost on top of each other. And they're not like real pimples, they're different. I get them on my face, scalp, chest, and back. It's horrible. And the immunotherapy always targets something else and I end up going off of it early. It seems like I can do 4 rounds and that's it. At that point something always goes south and I have to stop it.

Its quite effective, though. It always brings my CEA down substancially. I'm sure they're going to want me back on it again soon. I wanted the summer off because it makes me really sun sensitive but my CEA is now over 70 so I think they'll be getting me back in soon.

Jan 

abita's picture
abita
Posts: 658
Joined: Dec 2017

That sounds a lot like the targeted drug I am on, cetuximab. I am surprised immunotherapy does that with the acne. I thought the side effects were that it could put the immune system to attack organs in extreme cases, but did not see any acne/rash related ones. I asked about the two immunotherapies that are currently approved for colon cancer here in the USA. He said that those require mutations that I do not have. 

abita's picture
abita
Posts: 658
Joined: Dec 2017

I know you have told me before, but what is the immunotherapy drug you are taking?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

The drug is called Vectibix or Panitumumab. I think the difference may be whether it's in the states or here in Canada. They say it targets a chemical or something like that that's in the cancer but that same chemical (not the right word, really) is also in the skin of the face and upper body so it attacks that, too. They say the rash is an indication of how well it's working.

I've also had it go after any soft tissues from my private parts to the backs of my knees. Sometimes I can barely sleep because it's so itchy and the cream I'm prescibed only does so much. It's not terrible but I hate being on it. And, luckily the rash goes away withut leaving a mark. I've had the rash inside my ears and nose and it's just miserable.

Jan

abita's picture
abita
Posts: 658
Joined: Dec 2017

That is a targeted drug, not immunotherapy. Immunotherapy drugs make your immune system recognize that cancer is bad so that immune system will fight it. I think the one you are on is like mine. Mine blocks a protein that the tumors and skin needs, hopefully then starving the tumor. The two names you say aren't by country. One is the drug name, one is the brand name. Have you been considered for immunotherapy trials. Glad to know that the ance doesn't scar. I have had some on my face that bleed when I wash it. Here is what our drugs fight:

Epidermal growth factor receptor (EGFR) is a protein that helps cancer cells grow. There's often a lot of it on the surface of cancer cells. Drugs that target EGFR can be used to treat some advanced colon or rectal cancers. These include:

  • Cetuximab (Erbitux)
  • Panitumumab (Vectibix)
abita's picture
abita
Posts: 658
Joined: Dec 2017

is your oncologist actively looking for immunotherapy for you? Apparently, these can work miracles in some cases. The current ones approved for colon cancer require the patient have a mutation that I do not have. Oh, looks like they do cause a rash also, but you know, worth it for a miracle.

"Immunotherapy is the use of medicines to help a person’s own immune system better recognize and destroy cancer cells. Immunotherapy can be used to treat some people with advanced colorectal cancer."

 

abita's picture
abita
Posts: 658
Joined: Dec 2017

And thanks. I loved my hair so much.

Butt's picture
Butt
Posts: 325
Joined: May 2018

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

PamRav's picture
PamRav
Posts: 252
Joined: Jan 2017

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. 

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

becsuse losing Your  hair is very traumatic and probably not as big of a deal to guy. I know my husband only did one treatment with irinotecan in it and lost a ton of hair. Your hair is beautiful and you have the right to be sad and mourn it. 

abita's picture
abita
Posts: 658
Joined: Dec 2017

Thank you!

Canadian Sandy's picture
Canadian Sandy
Posts: 520
Joined: Jul 2016

Your hair is beautiful abita! Always remember it will grow back. I can understand being upset because of the reunion.

abita's picture
abita
Posts: 658
Joined: Dec 2017

I am not sure how true this is, but the infusion nurse said that she had a patient who had hair fall out when started with this drug, but that it started growing back even though she was on it for two years. 

 

I grew up in a very small Louisiana town. So rural that 7 towns went to the same high school. Kind of where everyone knows everyone. I moved away 30 years ago, so don't see people much. I am not even sure why looking good matters so much to me. I have gone to the corner store here on days where I forgot to brush mmy hair or wash my face, but for some reason, I want to be perfect at the reunion.

myAZmountain
Posts: 281
Joined: Apr 2018

Praying it grows back in thicker and more beautiful!

Joan M's picture
Joan M
Posts: 390
Joined: Oct 2016

It took a long time to grow back and only got to be just below my shoulders then it fell out again.  It grew back for a few months and then fell out yet again,  It is in the process of growing out and is only about a half inch long. 

I was on Folfox 3.5 years ago after  I was first diagnosed.  It made my hair thin out alot over the course of treatment and I finally got a short hair cut.  I wore scarves and also the free wig through the American Cancer Society ordered from TLC catolog at the cancer center.  It looks very natural and I wore that for a couple of years.  I missed my long wavy hair and couldnt afford the ones that were as long as my natural hair at the salon - they didn't even order them as long as my hair was and the 16 inch length was 3800, and 4200 for 18 inch length. 

So I found a 22 inch long human hair wig with full lace cap online through Wigsbuy.com and it only cost me $230 shipped from China. IT looks so natural that no one can tell it's a wig.

It was from China and took along time to get here.  While waiting, I ordered a couple cheaper wigs through Paula Young wigs.  I got 3 for $122.  They also look great and everyone's favorite wig is one I paid about $40 for, and one that was on clearance for $29.  

I had really long naturally wavy red hair and my long flowing hair was my signature.  It time getting used to the loss of my hair.  Now that I am used to wearing the wigs, it isn't so bad.  My husband doesnt care if I wear a wig, scarves, cap or go bald.  I am very lucky in that regard.  Although I wear his favorite wig most of the time just because i know he likes the way it looks on me.  The long one that I love the best and feel like I can recognize myself in the mirror is worn the least.  I wear it for special occasions, because I feel it looks best on me.  but is hotter and more maintainence involved.  

If you are on irinotecan for an indefinite period of time, you may not get your long hair back.  I have dreams that my hair has grown back long and lucious, but then I wake up.  It is something that I have come to  terms with but one can always dream.

I hope that can help you a bit, and totally understand how you feel.

 

Joan     

abita's picture
abita
Posts: 658
Joined: Dec 2017

wait, you mean it won't grow back even if you stop taking it and switch to a different drug?

Joan M's picture
Joan M
Posts: 390
Joined: Oct 2016

My hair falls out and then grows back in even though I am still on the same chemo.  Irinotecan and 5Fu on 3 week cycle for life or until something better comes along.

I am going to ask my doctor about the cetuximab or whatever you call that drug you are on.  My TEMPUS test did mention some that can help with the various mutations that I have, but all the doctors believe that the Folfiri combo is the best one for me at this time.  I really don't know why.  I have been hospitalized 3 times for side effects and several times couldn't get chemo due to low white blood count.   AND I'd really like my hair to grow back.  

abita's picture
abita
Posts: 658
Joined: Dec 2017

Someone else on here said they eventually got to just having the cetuximab.   It is what I am hoping for after my first hope of a miracle. 

Joan M's picture
Joan M
Posts: 390
Joined: Oct 2016

Let's just keep on praying and believing in that miracle!  and then we will both be cancer free and get our beautiful hair back !

abita's picture
abita
Posts: 658
Joined: Dec 2017

Yes!

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

One of our previous members said she had some success with a "cool cap" during treatments to help reduce hair loss.  I don't know how that works unless the cool temp reduces the blood flow to the scalp and therefore reduces chemo to that area.

Unfortunately, I don't have more info.  She died from the disease.  I will look and see if any msgs remain about it.  If I find something will post.

Marie who loves kitties

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

at 30 a friend was diagnosed with breast cancer and was getting married so she wore the cool cap for all of her treatments and barely lost any hair.

abita's picture
abita
Posts: 658
Joined: Dec 2017

I ordered a wig today. It really did look like my real hair. The lady was awesome,  and made me feel good enough they I actually got one just like my hair before chemo. She put the red swatch in what is left of my hair, and it was the exact same color so kismet I guess. It was cool that I could add barrettes, even some kinds of ponytails,  part however,  style however. Glad I decided to check it out.

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

I am happy you found something that will help you  feel better about this. I have no doubt you will look GORGEOUS! 

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

I'm glad that you found one that looks very similar to your hair and that you like.  There are a lot of people out their with wigs that you'd never suspect.  At least this will make you better about the hair situation.

Kim

abita's picture
abita
Posts: 658
Joined: Dec 2017

thanks for the encouragement! It was definitely one of those, well, who knows if I will make it, so buy the wig. At least I will be comfortable now at my reunion, and at any events where I don't want a chemo cap to be the focus. I have been looking forward to this reunion since I missed the last one. And I was trying to figure out how to cancel when I had already made plans with my friends back home. The lady was so wonderful. She made it fun. And like you said, she told me lots of women who don't even need wigs wear them to be able to shake things up, to not have to deal with styling hair. I am still going to be very sad about my hair, but at least now I won't beg off things because of my hair. Oh, and I tried on one that made me feel like Khaleesi! It was fabulous. I wanted to stand up and say, Dracarys. :) That one did not come in red, so I stuck with the 18 inch long one. Any guesses as to how much the insurance will reimburse? I am guessing 200. Oh, at least I get to send in a form to get the state tax back. 

SoCal42's picture
SoCal42
Posts: 74
Joined: Jul 2017

When I started in FOLFIRI + Erbitux a few months ago, my doctor said it could cause hair loss, but normally more thinning, not complete loss. I had some thinning with XELOX previously. Now I’ve lost most of my hair through persistent thinning, and I started out with very thick hair. Had to stand there and thin it out with my fingers twice a day. Finally got ridiculous and I cut most of it off. Now it still falls out, but the pieces are shorter. Looks terrible, I think the Erbitux makes it weirder. Totally going with the hipster beanie look. It was a lot less traumatic after the first 3 weeks.

Butt's picture
Butt
Posts: 325
Joined: May 2018

I was wearing cool beanies even to work before I got cancer. still wearing them. People think it is a norm for me.

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