Temporary hair loss but not forever alopecia

Cynth6

Hi Ladies,

I’ve just caught up with tonight’s Married at First Sight episode. There is a lady on there called Gabrielle who just had tell her “husband” that her beautiful hair that he likes is actually a wig as she has alopecia.
 My heart sank when she told him the truth as  as she didn’t know how he would react. 

As a single 31 yr old post chemo I find it so hard to tell the guy I’m talking to about my wig that hides my short pixie hair. But you know what we can be grateful for ?? That we don’t have permanent hair loss. Our hair grows back, although sure it seems like it takes forever but it does grows back. But unfortunately women like Gabrielle have to live with a wig forever to hide their completely bald heads. 

Moral of the story, yeah it’s been a hard road for us women and men who have been through chemo and the horrible side effect of hair loss, but remember it’s only temporary and there are people far less fortunate than us. 

Sending positive vibes to everyone going through different stages in this cancer battle. 



Cynthia xo

Afraser

As a thread on this site notes, in some rare cases, hair doesn't grow back. It has been heartening to see the hair tyranny for men slip away -  the No 3 clippers option or shaved is now entirely acceptable instead of the toupee or the combover - well, apart from the President of those United States. But not for women. I realise that many women have a strong identity link with their hair, but when you have been bald you get an insight into the lives of others permanently affected and that hair is not you or your life. 

Cynth6

Hair loss was a huge loss for me. And until now I still struggle with it. I didn’t know that some women have been affected with permanent hair loss as I haven’t seen those threads @Afraser

Afraser

I had a colleague years ago who had alopecia. She was very elegant and stylish with a wig and scarf ensemble but would never have done the Sinead O'Connor thing! Neither would I, my scalp
has too many bumps and scars! But I have huge admiration for those who can and do. I was lucky, I didn't have too much concern about losing my hair but I really didn't like the way I looked older bald! 

MarC

Hi Cynthia, I'm afraid you're wrong about hair loss from chemo not being permanent in some cases.  I don't want to scare anyone but it needs to be known that unfortunately, as I've discovered in some cases it can be permanent (depending on the chemo used).  I finished chemo roughly 18 months ago and my hair hasn't grown back.  I have been trying and trying to find information and answers ever since I noticed it wasn't growing back.  No one really knows or talks about "Chemo induced Alopecia", they (the medical specialists) all say "it will grow back" or "everyone is different and it takes time".   I've tried scouring the internet to find the answers that no one seems to want to provide to me.  What I've found is that they say that around 6% of cases, hair doesn't grow back after the drug Docetaxel is used.  The figures could be higher (I believe) as I don't believe anyone is recording the stats here in Australia.  I have seen that there is a support group and also a class action in America for this very issue but there is no information here in Australia so people like me are just left to deal with this totally alone.   This is such an emotionally devastating long term side effect which has totally affected my quality of life and my whole demeanour.  People often say "at least you can just wear a wig or scarf", not realising that wigs are hot, uncomfortable, expensive as well as other problems such as wind and rain.  Also as you don't wear them all the time, each time you look in the mirror you have a constant reminder of what you have been through and the disfigurement you now have.  I'm writing this with the hope that this gets the attention it deserves, and hopefully if other women who are experiencing this horrible outcome will also add their stories about how we weren't warned, or informed of the statistics, or given an alternative chemo to ensure this wouldn't happen.

Sister

@MarcieC I'm so sorry to hear this has happened to you.  Some women rock the bald look but it's not one that you want foisted on you.  I had read some discussion about it and when I had my first consultation with my oncologist and the hair loss issue came up, I said that I had heard something about one of the chemo drugs.  He knew straight away which one I was talking about and said he doesn't use it because of the side effects (at least, that's how I remember the conversation - I wouldn't go to court on it).  So, the oncology profession in Australia is aware and it is appalling if the doctors are not providing this information.  I should say that my oncologist also teaches so I assume that he is aware of what is current.

MarC

Thanks so much for your comments, it's just so good to hear someone else who has heard about this, instead of the blank looks that I get everywhere (and this also includes Cancer support organisations).  It's just so hard dealing with it alone and not getting any answers.  Thank you.

Sister

I was just trawling the net and found an article from the Telegraph from 2015 saying that people affected by this have been talking about it since 2006. https://www.telegraph.co.uk/lifestyle/wellbeing/healthadvice/11841436/I-survived-cancer-but-drugs-left-me-with-permanent-alopecia.html 

Glemmis

I hadn't heard anything about permanent hair loss until my first appointment with oncologist who said she wouldn't use Docetaxol as it wasn't acceptable that some women's hair didn't grow back. I wouldn't have known any better if she was going to use it so am grateful for that. It would be a constant reminder & I don't think you would ever get used to it.

MarC

Thank you, yes I have seen that article, that lady has written a book about her hair loss from Chemo.  It seems like a lot of the articles are dated from a few years ago to back to 2006 (like you've mentioned) but not a lot since and nothing here in Australia.

Zoffiel

@MarcieC I am so sorry to hear that. There are other women on the site who have similar issues and it is seriously affecting their quality of life. 

The rather blase attitude of some oncologists when it comes to 'non life threatening' side effects to some of these drugs is disturbing. I really like my oncologist, he's a great guy ( with a seriously distracting derriere that looks made for doing the Salsa ) but when the comes to some of the issues I'm having there seems to be an excessive amount of shrugging and vague statements that things will probably improve. Really? When?

I bailed him up last week and demanded to know what he does with the information I've given him. Where does it go? Is anyone keeping any stats on these peculiar 6% issues? Or are they just relying on the information the drug companies give them? Yes, there is a great deal of research dollars invested in the treatments, but what about all the weirdo things that happen. Why are we not given more information about the risks. His reply? It's hard enough to convince many patients to go ahead with chemo without scaring the hell out of them with horror stories. I'd like to think he was joking, but the smile was not convincing.

Sister

Again, it appears that we are too imbecilic to trust with making decisions about our own health and quality of life.  

MarC

@Zoffiel I completely agree with your comments about the blasé attitude and vague comments of some oncologists, which sadly appears to be the case with mine.  I did not get told of the risk, in fact I was told I only had a 70% chance of losing my hair at all.  I do agree with your oncologist saying it can scare the hell out of some people with the horror stories, however if this drug is known for this permanent side effect, and there are other drugs that don't have the side effect, why are they still using it?  That's what I guess is upsetting me most - that this didn't need to happen to me or any others.  Thanks for letting me know there are other women who have commented about this on this site, I haven't actually been on an online forum yet to discuss as it's just been too difficult to face up until now, and I haven't scrolled through all the previous comments.  
@Sister Yes, I just trusted what was told to me, never ever thinking anything like this could ever happen.
Thanks so much ladies for your comments and support  

wendy_h67

Well girls I'm about to loose my hair for the 4th time. After being on chemo treatment for 6 years. It does upset me a bit , but being alive is more important.!!!   I'm  not  a wig or hat lover so I just shove something on my head before going out. This time I got to the stage where I could go without a cover up.but my hair will gradually fall out again. I think having no eyebrows worries me more. Then I remind myself that I'm still here and making the most of each day.

Afraser

To be utterly fair, most doctors see their role as preserving life. What makes a life worth living is extraordinarily varied, from person to person, circumstance to circumstance. And most doctors can't make that call for someone else. My oncologist gave me enough information about my chemo regime to scare me silent (no
mean feat). And written information too. At the time, I had virtually no experience with any serious illness, and like many people, no real idea of what I should be asking about. I have learned a fair bit over the years. As @primek once said on another matter, the importance of stats depends on which side of the line you fall. 94% chance of your hair regrowing sounds pretty good, unless you are in the 6%. Some people may be overloaded into not having treatment by too much information, others aren't provided with information they would value and need. We have for a long time placed much more emphasis on science and technique in medical training and not a lot on listening and empathy. One is most certainly not a substitute for the other but more of the latter may foster a climate of understanding about treating the whole person. 

lrb_03

Completely agree with all your comments. I certainly don't recall being told anything about the possibility of permanent hair loss , although I was aware it could happen.  I knew someone who now has very sparse hair oner the top of her head. Male pattern baldness, I guess. I'm not sure what chemo regime she had, but it was close to 10 years ago now, and that's as good as it's gotten unfortunately.