Hello, I finished chemo 9 weeks ago and I’m losing more hair now than when I was on treatment. I did cold cap and managed to save about half my hair. The rest seems to be falling out now. Has anyone else experienced this?
Yes - currently 5 weeks post chemo and shedding like crazy! I lost about 30% of my hair during chemo and was so pleased that it looked OK but getting seriously anxious now that I may lose most of it. I did look into it and read that the chemo drugs remain in your system for up to 12 weeks and so it can affect your hair for some time. Really hoping that it slows down soon though 
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Absolutely yes! I cold capped and thought I made it but shedding continued long after chemo. It was so horrifying. But hang in there… those clumps in the shower will start to lessen, I promise! And because of cold capping, by 4 mos post final chemo, I had remarkable regrowth. It was coarse, frizzy, and white but I was able to dye it, treat it w keratin and get extensions. You are almost there!
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That’s a relief to hear others are going through the same with hair loss and I’m not the odd one out. I’ll stop panicking. Thanks for sharing your experience with me.
Cannot understand why anybody puts themself through the extra agony of cold capping which simply doesn’t work. Isn’t the unpleasantness of chemo enough to cope with without this?
The best you can hope for is patchy wisps of hair and increased anxiety from constantly wondering how much is going to fall out. Far better to have it shaved off and buy some nice wigs or headwear. Hair then grows back evenly. Within a year of the shave I had strong re growth which changed from coarse frizzy curls into luxuriant locks. So glad I accepted the inevitable rather than saddling myself with unrealistic expectations
I have to disagree. I was on toughest regimen where everyone said it wasn’t possible (ac-t). I can go out now after all the rounds of chemo and few would know as while I have lost a huge amount of hair I have enough to get away with It and look like I have a full head of hair. I have also as a result of capping been able to keep my diagnosis private which was important to me.
In ways obsessing about my hair means I am not obsessing about recurrence which is a side benefit.
I am a firm believer in each to their own and what works for one person won’t work for everyone. Cold capping was very hard but it saved a lot of heartache and preserved the norms of family life for our kids too so I am grateful.
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I also strongly disagree with this! My youngest child was going through his GCSEs whilst I was going through chemo. When I asked him what he was most worried about, he said it was seeing me ill - particularly losing my hair. So I promised him that I would do everything I could to try and keep it. It gave me a focus too and I have lost about 30% of my hair overall and I can go out with no head covering and no one would know I have cancer or have had chemo. Most people hate losing their hair during chemo - it’s not about vanity, it’s about retaining some normality x
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That’s what wigs are for! Nobody knew I had cancer.
As for going through the agonies of cold capping in order that a 16 year old can pretend his poorly mum isn’t ill …well, it wouldnt be my way. It is interesting, though, reading about parents going down the route of ‘no cancer here,’ to protect children. Everybody makes their own choice but don’t our kids stand a better chance of getting on in this difficult world if we are honest with them and share the realities of life?
My kids are wholly supportive and have seen my hair loss and all the realities that go with a cancer diagnosis so not sure what the point of your message is.
A wig is no different than trying to preserve some norms. It’s not about hiding the diagnosis and they have been through the ups and downs with me and am very proud of how they have handled it.
I am wholly supportive of each person’s route to what makes people feel their best and to negate some of the horrible side effects of this awful disease. For some people it’s about taking control and shaving their hair. In my case the cold cap helped my sense of control and while it was uncomfortable it was absolutely worth doing and has really helped me. This forum also has helped and if people are looking for tips and advice which this post was about then people should be free to be able to do just that.
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I’m sorry but I don’t understand why you are replying to a concern that someone has with a hostile and quite dismissive answer. You clearly don’t agree with cold capping and know very little about it. I wouldn’t dream of posting a response to someone saying they were concerned about their nails falling off with a ‘who cares, just get over it’ reply. This is meant to be a supportive space where people can come for kind, helpful answers. How I handle my family’s concerns and worries is entirely up to me! I wish you all the best but would respectfully suggest you could be a little kinder x
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Neither hostile nor dismissive, just expressing my point of view - as you did. And for the record I investigated the cold cap thoroughly before reaching the conclusion that it was pretty much a waste of time with dubious outcomes the result of an unpleasant process. Nothing I have seen or heard since has changed that view.
The post was written by someone who had already made the choice to cold cap. I respect you think it is a waste of time however I feel the exact opposite and has been the best thing I have done. Each to their own!
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Wow, I’m really disappointed by your responses. I’ve never posted on here before and was hesitant to do so for fear of toxic and judgemental responses. I posted seeking support for the amount of hair loss I was experiencing after I finished chemo and you went on a tangent about cold capping- offering unsolicited thoughts about it that are really quite judgemental. While you may not have meant for your words to be hostile, they certainly came across to be that way. Not sure I will bother using this forum again, what a shame.
Thank you though to @ivy-cat -cat and the other supportive responder @Vissdoc for your kind and helpful words.
And for the record, I’ve worked in oncology research for many years and done my research on this too beyond Dr Google and I’m not sure you can say definitely that it doesn’t work.
@aussiedan - please don’t let this put you off using the forum. I’ve been on here since March and everyone has always been supportive and kind. If you want any further support or advice regarding cold capping then please feel free to message me direct (there’s a message function on here).
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Hi, I just wanted to say please don’t let the response put you off as I’ve also otherwise had good experiences on this forum and have never came across these kind of messages before (the tone of them actually took me aback a bit). I’ve been following the Paxman Scalp Cooling Facebook group and have also successfully cold capped till now and have noticed other people commenting on the group that their shedding had either sped up a bit or kept going well after chemo. Paxman commented on it and on looking at this/their website, they say that shedding can be faster for up to 8-12 weeks after chemo finishes. I’m only 10 days after my last chemo so waiting to see what happens next/when the shedding decreases.
Not sure if you have already seen this but the have a website for users as well (I’ve had a look at their FAQ type stuff a few times for various things)
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Depends how you define ‘work.’ As I think I made clear, my argument is that sick people, already suffering from the effects of chemotherapy, subject themselves to extra trauma because they believe it will allow them to keep their hair. If that meant hanging on to all or even most of ones existing hair, I could easily understand the motivation. But having gone through several chemo experiences in different hospitals, the evidence is that these brave ladies end up with wisps of retained hair or a moth-eaten looking scalp. That, for me, is not worth extra pain and suffering. Additionally the retained hair is hardly worth having as it is so frazzled and dry from the chemo chemicals. In my personal opinion, and it is just that, far better to bite the bullet, invest in lovely wigs and start afresh with new hair when your chemo journey is over.
Find it hard to understand why people cannot tolerate different views to their own and find it necessary to make personal attacks on me for daring to deviate from popular opinion.
How really nasty to call somebody rude because they dare to express a different opinion. Horrible.
@teddy271 To call someone’s head “moth-eaten” is pretty disrespectful. I think you will find that the people posting back were addressing your comments.
@aussiedan this forum gave me lots of valuable advice and there are a few other threads worth joining if you might be still comfortable posting. Otherwise feel free to message me if you have any other questions?
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