Keeping your hair during chemo therapy?

[stachelbeere]

I don't have cancer. But I often wonder how sad it would be to lose one's hair.

So I heard about the so called Penguin Cold Caps which dramatically reduce the amount of hairloss during chemo therapy. It's basically a 'helmet' made of ice-cold (-30 degrees) gel pads that you put on your head before chemo. I assume it freezes your scalp so the chemicals don't get to the hair follicles.
Here is the website: http://penguincoldcaps.com/

What do you guys think? Have you heard about this?

[summergreen]

I've heard of them, its great that there's something that can help people keep their hair through chemo treatments. It must take a very strong willed person to put themselves through the additional discomfort though, I hope an easier way gets developed before too long.

[CharleaMurphy]

I've heard of them too. Unfortunately they are not accessible to most chemo patients because they have to be stored in special freezers which are expensive and most hospitals won't invest. It's a brilliant idea though and I hope they become more readily available. I know if I was undergoing chemo that it would be a great comfort to me not losing my hair.

[Eve 322]

I've often thought how de-moralizing losing my hair would be if (god forbid) the worst ever happened.

I'm so glad that people are developing alternatives. Women should be able to maintain their dignity while attempting to overcome such a horrible and trying disease.

[spidermom]

That sounds just awful. I don't even like to do a cold rinse after washing (cool is o.k.).

If chemotherapy is targeting cells that grow at a certain rate, and a person's hair just happens to grow at that rate, I'm not sure how making the scalp cold would help.

[Eve 322]

Sorry -- still don't know how to edit my original post!!

Not that losing your hair = losing dignity. Just that, for someone like the people on this forum that have dedicated so much time and put so much love into growing out their hair, it would be devastating to have that all taken away in a matter of weeks. :\

[fairview]

It's called the Rapunzel project. It is aggressively supported by Kenra. Here is the web site for those wanting more info. http://www.rapunzelproject.org. It is a very worthwhile project.

The reason this is not available on a widespread basis really has nothing to do with equipment. It comes down to the bottom line. This technology is not covered by insurance. Since it is not a medical intervention in the sense that it is a cure for a physical or emotional ailment, the FDA will not lift a finger to look at the research and approve it. Since it is not covered by insurance and the FDA will not weigh in on it, only those oncology doctors and centers that service deep pockets who can afford to pay for it, make it available. I think if the FDA approved AND insurance covered it as part of reasonable and customary costs to treat cancer, the smallest podunk hospital in the smallest one horse town would have this technology available for their patients. Just my jaded opinion though.


I've heard of them too. Unfortunately they are not accessible to most chemo patients because they have to be stored in special freezers which are expensive and most hospitals won't invest. It's a brilliant idea though and I hope they become more readily available. I know if I was undergoing chemo that it would be a great comfort to me not losing my hair.

[Tori Angeli]

I used to work for an oncology office. There was at least one chemo medicine that generally didn't cause hair loss (for GYN cancer), but it was infamous for causing awful all-over skin rashes. I don't know about others. Some patients do have options, but that doesn't mean that medicine is going to be the best one to remove their cancer.

[torrilin]

Cancer isn't really one disease. Not even one disease per organ.

Some cancers only respond to medications that also cause hair loss. Most cancers respond to a wider variety of medications. You won't automatically lose your hair with a cancer diagnosis, and most cancer patients don't.

It'd definitely suck to get a cancer where the best available treatment regimen involved losing my hair. I wouldn't like it. But I'd like being dead a *lot* less.

[jlb]

It depends on the medications. I have an Aunt coming off of two years of chemo that never lost any hair. Unfortunately they decided to do a round of radiation & she's having all kinds of issues with that including hair loss. She's a go getter though & completely embraced baldness. I think she likes the "shock" value :)

On the other hand, I have a sister that who's surgery required that half of her hair be shaved off followed by chemo & radiation at the same time. She hasn't had any hair loss & is just waiting for the shaved part of her hair to grow before she trims the longer side down to match. We've had a good time buying her hats & flowers to put on them so she feels more comfortable out in public. I keep trying to get her to put some crazy colors on the hair she'll eventually cut off, but for some reason she won't let me, guess this means she didn't like the magenta highlights I had in my hair!

[teddygirl]

I've always said that I would shave my head and get my own hair made into a wig. I wouldn't want to try these sort of things, and then have a bad reaction or still end up losing my hair.

[dulce]

I would definitely use this,it took me years to get to my length..

[Glass Spires]

If I had to get chemo, I'd jump at the chance to keep my natural hair. Losing it would be sad....

[Eve 322]

I've always said that I would shave my head and get my own hair made into a wig. I wouldn't want to try these sort of things, and then have a bad reaction or still end up losing my hair.

That is actually a good idea. Barring the treatment mentioned in the first post, I would probably do this as well.

[ravenreed]

In all honesty, if I am going through chemo then the last thing on my mind will be my hair. If I LIVE, then I can grow it back.

[neko_kawaii]

In all honesty, if I am going through chemo then the last thing on my mind will be my hair. If I LIVE, then I can grow it back.

This, coupled with having actually gone bald has me scratching my head wondering what all the fuss is about.

I understand that some people have managed to tie their self identity to their hair and that loosing it would be a bit of a shock but wouldn't it be better to teach people to identify themselves in some other fashion?

[HumanBean]

I think I'd use the hair loss to do some really crazy fun thing I personally wouldn't otherwise do, like crazy colors, undercuts, crew cuts with shaved patterns or bare scalps with elaborate henna tattoos.

And I like hats too. I mean, I'd be upset I was losing the hair, don't get me wrong, but I don't believe I'd dwell on it much.

[Eve 322]

This, coupled with having actually gone bald has me scratching my head wondering what all the fuss is about.

I understand that some people have managed to tie their self identity to their hair and that loosing it would be a bit of a shock but wouldn't it be better to teach people to identify themselves in some other fashion?

I can only answer for myself, but I don't think it's that the identity of self is too tied up in hair. For me, at least, it's like any other hobby or *thing* that you're into. For example, say you really enjoyed collecting...I dunno...model cars, and you'd spent a good amount of years on said collection. To lose all the model cars you'd spent time purchasing and painting, etc -- to lose all of that in one shot would hurt, badly. I feel like anything that a person has put so much time and effort into is worth making an effort to keep, and that even with the introduction of a much bigger, life altering change (like cancer), the loss of a lifelong hobby (or whatever you want to call it) is a little devastating. Sure, you can rebuild a collection and regrow hair, but it still sucks. :\ Feel me?

But I agree that you'd have bigger issues to worry about (i.e. trying to survive!). To me, losing my long hair that I love on top of having cancer would just feel like adding insult to injury.

[truepeacenik]

Cancer
Hair

I'd rather have the hair regrow.

I have said that should it, g-d forbid, happen to me, I would use that as my chance to grow dreads.

[spirals]

I'd cry at losing my hair, but after that I'd start a new hobby: scarves! If the penguin cap were available and covered by insurance, I'd try it, though. I spend an hour every day with my back on an ice block, so I could graduate to that kind of cold on my head.

[leslissocool]

In all honesty, if I am going through chemo then the last thing on my mind will be my hair. If I LIVE, then I can grow it back.

This, for me. Everyone told me I was crazy the day we talked about it with the family, and I said that the day I found breast cancer I will go full double mastectomy, even if that left me with no money for fake boobs or reconstruction. Yup, I'd rather get rid of them completely than risk death. I have a lot to live for, my kids for one are fighting a huge developmental battle, I want to live as long as I possibly can and as able bodied as I possibly can. I would cry for losing my boobs, or hair, or even if I don't want to ever go through another pregnancy my ovaries. But if it buys me more time, it's just a battle scar.

Breast cancer runs on my stepson's family, that's how we came to talk about it. His grandmother has it, and has had a mastectomy and there is talk of another one.


I think I'd use the hair loss to do some really crazy fun thing I personally wouldn't otherwise do, like crazy colors, undercuts, crew cuts with shaved patterns or bare scalps with elaborate henna tattoos.

And I like hats too. I mean, I'd be upset I was losing the hair, don't get me wrong, but I don't believe I'd dwell on it much.


See you are so cool :hifive: and with such an awesome attitude.

[woolyleprechaun]

I can only answer for myself, but I don't think it's that the identity of self is too tied up in hair. For me, at least, it's like any other hobby or *thing* that you're into. For example, say you really enjoyed collecting...I dunno...model cars, and you'd spent a good amount of years on said collection. To lose all the model cars you'd spent time purchasing and painting, etc -- to lose all of that in one shot would hurt, badly. I feel like anything that a person has put so much time and effort into is worth making an effort to keep, and that even with the introduction of a much bigger, life altering change (like cancer), the loss of a lifelong hobby (or whatever you want to call it) is a little devastating. Sure, you can rebuild a collection and regrow hair, but it still sucks. :\ Feel me?

But I agree that you'd have bigger issues to worry about (i.e. trying to survive!). To me, losing my long hair that I love on top of having cancer would just feel like adding insult to injury.
This is a wonderful post. You've explained that brilliantly :) At first I was a bit worried about the model car analogy ;), and then I was thinking 'My God! That analogy works!'. For me, my hair is definitely a hobby, and losing it under any circumstances would devastate me; not through identity crisis or vanity, but simply because it is a hobby. I would definitely try what I could to keep my hair if I ever had to have chemo, providing it didn't interfere with my treatment of the efficacy of it (i.e. I wouldn't demand a 'hair friendly' drug if it was less suitable than a 'certain to make you bald' one. Health first!)

[neko_kawaii]

I can only answer for myself, but I don't think it's that the identity of self is too tied up in hair. For me, at least, it's like any other hobby or *thing* that you're into. For example, say you really enjoyed collecting...I dunno...model cars, and you'd spent a good amount of years on said collection. To lose all the model cars you'd spent time purchasing and painting, etc -- to lose all of that in one shot would hurt, badly. I feel like anything that a person has put so much time and effort into is worth making an effort to keep, and that even with the introduction of a much bigger, life altering change (like cancer), the loss of a lifelong hobby (or whatever you want to call it) is a little devastating. Sure, you can rebuild a collection and regrow hair, but it still sucks. :\ Feel me?

But I agree that you'd have bigger issues to worry about (i.e. trying to survive!). To me, losing my long hair that I love on top of having cancer would just feel like adding insult to injury.

I've been down the road of having to give up hobbies and redirect my profession because of physical injuries, on two separate occasions. Hair is the least of my concerns. I'm also in the "I'll take the double mastectomy camp" if it will save me any hardship later on.

I think more effort should be put into helping people address the changes and dealing with them emotionally than trying to patch them up and hide them.

[stachelbeere]

Thank you for all your opinions!

The reason why I asked is that I like to think of myself as a person taking precautions and seeing what options there are. If there was a way of keeping my hair and getting treated it would be great. if I had to decide between my hair and my life I would choose my life. Why would I want to be a corpse with long hair?! That would be stupid...

But I always hate to choose between two things. I usually try to accommodate both options if I can. And this is the case here.

I agree with the opinion above that hair is a hobby (at least in my case) and I wouldn't want to give up my hobby if I didn't have to. I never had long hair in my life (almostAPL is the longest - being now.) and it just takes so long to grow. It makes me sad when I go through a period of time when I have a heavier hair shed than usual because all that hair is gone from my head and will take so long to grow back.

[SerinaDaith]

I would totally be in the get a tattoo on my bald head camp, cancer is a major part of my family medical history. Would it hurt my feelings to loose all my hair, yes, would I be letting that be what really made me sad, nope. Pretty scarves, awesome ink and a friend and family base who are all smart enough to just live life when mine gets rocky are all I need. I have had a 1/4 inch buzz cut, I loved it.

[jacqueline101]

It's sad to have cancer and to have your hair fall out. I do agree with Spidermom how does freezing your scalp prevent hair loss.

[Nightshade]

It's sad to have cancer and to have your hair fall out. I do agree with Spidermom how does freezing your scalp prevent hair loss.

It prevents the uptake of the meds into the follicles, essentially. It's more complicated than that, but that's the short version.

[Eve 322]

This is a wonderful post. You've explained that brilliantly :) At first I was a bit worried about the model car analogy ;), and then I was thinking 'My God! That analogy works!'. For me, my hair is definitely a hobby, and losing it under any circumstances would devastate me; not through identity crisis or vanity, but simply because it is a hobby. I would definitely try what I could to keep my hair if I ever had to have chemo, providing it didn't interfere with my treatment of the efficacy of it (i.e. I wouldn't demand a 'hair friendly' drug if it was less suitable than a 'certain to make you bald' one. Health first!)

Oh, thanks!~ :o Yeah I don't know why I picked model cars, I was trying to think of a good hobby analogy and for some reason my mind went blank except for that one thing. Silly me. ;p I'm glad I was able to get my point across, though.


I would totally be in the get a tattoo on my bald head camp, cancer is a major part of my family medical history. Would it hurt my feelings to loose all my hair, yes, would I be letting that be what really made me sad, nope. Pretty scarves, awesome ink and a friend and family base who are all smart enough to just live life when mine gets rocky are all I need. I have had a 1/4 inch buzz cut, I loved it.

I'm a tattoo artist and am covered in tattoos. Obviously I'm not super into the "shave all or half of my head" style that seems to be predominant with female tattoo artists these days, because I love having long hair. Some women can pull it off very well, but I've never considered my facial structure to be good for that. But if I HAD to lose my hair, I would totally take the opportunity to tattoo my bald head, along my hairline. I think that would be pretty cool.

I wonder if having a tattooed scalp makes your roots look darker when you grow it back in? Hmm...something new to go google searcg. ;p

[neko_kawaii]

Thank you for all your opinions!

The reason why I asked is that I like to think of myself as a person taking precautions and seeing what options there are. If there was a way of keeping my hair and getting treated it would be great. if I had to decide between my hair and my life I would choose my life. Why would I want to be a corpse with long hair?! That would be stupid...

But I always hate to choose between two things. I usually try to accommodate both options if I can. And this is the case here.

I agree with the opinion above that hair is a hobby (at least in my case) and I wouldn't want to give up my hobby if I didn't have to. I never had long hair in my life (almostAPL is the longest - being now.) and it just takes so long to grow. It makes me sad when I go through a period of time when I have a heavier hair shed than usual because all that hair is gone from my head and will take so long to grow back.


Loosing hair temporarily is not giving up a hobby, it is just putting it on hold. Growing long hair takes years but it doesn't take decades (perhaps one decade if your genes will support ankle length). Think of all the things that it took you years to achieve. Did you sit around chafing at the wait every day? Probably not. You acted when action was needed to pursue your goals and you lived the rest of your life the rest of the time.

I think with everything that happens to a person when they have cancer worries about their hair should be furthest from their mind. Bald=Beautiful should be an PSA campaign so that no one goes into cancer treatments worrying that others will consider them less anything for lack of hair.

[kaydana]

This, coupled with having actually gone bald has me scratching my head wondering what all the fuss is about.

I understand that some people have managed to tie their self identity to their hair and that loosing it would be a bit of a shock but wouldn't it be better to teach people to identify themselves in some other fashion?

It's great for you that it wouldn't bother you, but I just don't understand what point you're trying to make here.

How is it better to teach people to deal with an unpleasant side effect rather than preventing it?

[neko_kawaii]

It's great for you that it wouldn't bother you, but I just don't understand what point you're trying to make here.

How is it better to teach people to deal with an unpleasant side effect rather than preventing it?

Is preventing it an easy thing to do? Or does it take time away from their lives? An extra thing to worry about when you are already exhausted and stressed. Unpleasant as a description for hair loss seems misplaced when compared with the realities of cancer treatments, not quite as nonsensical as "loss of dignity", but comparable.

[kaydana]

Is preventing it an easy thing to do? Or does it take time away from their lives? An extra thing to worry about when you are already exhausted and stressed. Unpleasant as a description for hair loss seems misplaced when compared with the realities of cancer treatments, not quite as nonsensical as "loss of dignity", but comparable.

I don't think anyone's suggesting forcing this on someone who doesn't want it. People are quite capable of making their own decision as to whether or not keeping their hair matters enough to them. Some people will be like you and not care at all, but for others it will be that seemingly unimportant thing that makes their illness just that little bit easier to cope with.

[neko_kawaii]

And I think that looking "different" would be easier to cope with if people didn't try to fight it or hide it but embraced where they were in life.

[ravenreed]

The folks (most of my family and several family friends have died from various cancers) I have known that had cancer had so many unpleasant side effects from their treatment that the hair-loss wasn't really what they complained about. I recall a lot more concern over keeping food down and desperately trying to survive.


It's great for you that it wouldn't bother you, but I just don't understand what point you're trying to make here.

How is it better to teach people to deal with an unpleasant side effect rather than preventing it?

[jeanniet]

I think I'd just look at it as a chance to see what being bald feels like and shave it all off. I can see where it would be a good thing to not have to deal with longer hair while going through recovery from surgery, chemo, and whatever. I also dislike being that cold, so adding another discomfort to everything else wouldn't be something I'd choose to do. But for some women, the loss of hair is either significant in and of itself, or symbolic of a greater loss/fear, and for them if it helps, I'd say go for it.

[kaydana]

And I think that looking "different" would be easier to cope with if people didn't try to fight it or hide it but embraced where they were in life.

But people don't have to be forced to cope with it any more, that's the point.

When someone's undergoing treatment for cancer, it really isn't the time for a bit of unnecessary enforced character building. They have quite enough to deal with without having to cope with unnecessary side effects that make them feel worse because other people don't think it's a big deal.

For many people, looking good is an important part of feeling good, and many people massively underestimate the difference that can make to someone. It's assumed that because someone is ill they don't care about their appearance, but that often isn't true. There are a huge number of volunteer hairdressers, beauticians and nail technicians volunteering for the organisation I volunteer for. They do it because their services make people feel better. It's not going to cure anyone, it's not saving lives, but it makes people feel better.

ETA: "Good" in this context is obviously relative

[kaydana]

The folks (most of my family and several family friends have died from various cancers) I have known that had cancer had so many unpleasant side effects from their treatment that the hair-loss wasn't really what they complained about. I recall a lot more concern over keeping food down and desperately trying to survive.

This product exists. If there wasn't a market for it, it wouldn't.

[neko_kawaii]

But people don't have to be forced to cope with it any more, that's the point.

When someone's undergoing treatment for cancer, it really isn't the time for a bit of unnecessary enforced character building. They have quite enough to deal with without having to cope with unnecessary side effects that make them feel worse because other people don't think it's a big deal.

For many people, looking good is an important part of feeling good, and many people massively underestimate the difference that can make to someone. It's assumed that because someone is ill they don't care about their appearance, but that often isn't true. There are a huge number of volunteer hairdressers, beauticians and nail technicians volunteering for the organisation I volunteer for. They do it because their services make people feel better. It's not going to cure anyone, it's not saving lives, but it makes people feel better.

ETA: "Good" in this context is obviously relative

And my point is that if people were introduced to the topic of different types of beauty and less "crowning glory" beauty throughout their lives they wouldn't suddenly have to cope with it when they or a loved one was undergoing cancer treatments.

[leslissocool]

And my point is that if people were introduced to the topic of different types of beauty and less "crowning glory" beauty they wouldn't suddenly have to cope with it when they or a loved one was undergoing cancer treatments.


There is another thread where a girl was told, by a stranger, she looked UGLY for being bald. She got asked if she had cancer. To me, there is so much more wrong that people would consider something like bald so horrible and ugly and ect ect. I wished there was more acceptance. I feel like bald is a badge of cancer in this society, and that's what the issue really rests on. My friend with lupus lost half her hair and shaved it, and she had similar "you look like you have cancer" issues.

[kaydana]

And my point is that if people were introduced to the topic of different types of beauty and less "crowning glory" beauty they wouldn't suddenly have to cope with it when they or a loved one was undergoing cancer treatments.

I'm sorry, that makes no sense. You can't say "bald is beautiful too" and suddenly expect everyone to be happy with a forced change to their appearance.

[Alun]

I have to confess that having long hair is an important part of my identity. On top of that, aside from MPB, growing up when and where I did the only models for men with hair that short were skinheads. Not being a violent racist Nazi myself, I think I would be mortified to look even slightly like one. That said, there was even a period (the '90s) when it was fashionable for men to have shaved heads. Can't say I even begin to understand it, but I think I have adjusted to the fact that men like that are not all skinheads. Had no choice, really.

As for cancer and chemo, it certainly occurs to me that it might not even cross the minds of the medical profession that a male might care about hair loss from chemo atall, or that they might ever be dealing with a guy who'd had long or longish hair for all of the last 40 years.

However, my own mother did have chemo for breast cancer, and did lose all her hair. It actually grew back dark initially, and then went grey all over again! Not that she ever had long hair. Hers has always been about shoulder length, since she was a young girl AFAIK. But it does grow back.

For that matter, there is a guy called Ian on another long hair board who lost his hair from chemo quite recently. Hard to adjust to seeing him like that, but it grows back slowly. Slower I suspect because of his age, which I don't know exactly, but I suspect he's old enough to retire.

If I ever had cancer and needed chemo I think I would like to keep my hair if I could, but it doesn't sound like an option that most people get, so really not something to count on.

ETA: My mum is doing fine, and AFAIK so is Ian.

[Pierre]

It is aggressively supported by Kenra.
As a Lojbanist, I find this extremely amusing.

If I had cancer, which is not unlikely as both my parents have had it, I would look for other treatments that don't involve shutting down non-cancerous fast-dividing cells. Meanwhile, I eat the best I know how, and try to avoid slow poisons.

[stachelbeere]

But people don't have to be forced to cope with it any more, that's the point.

When someone's undergoing treatment for cancer, it really isn't the time for a bit of unnecessary enforced character building. They have quite enough to deal with without having to cope with unnecessary side effects that make them feel worse because other people don't think it's a big deal.

For many people, looking good is an important part of feeling good, and many people massively underestimate the difference that can make to someone. It's assumed that because someone is ill they don't care about their appearance, but that often isn't true. There are a huge number of volunteer hairdressers, beauticians and nail technicians volunteering for the organisation I volunteer for. They do it because their services make people feel better. It's not going to cure anyone, it's not saving lives, but it makes people feel better.

ETA: "Good" in this context is obviously relative

I agree with you, kaydana. For me a huge part of feeling good depends my perception of myself. I switch to autopilot mode when terrible things happened to me, that has been the case in the past. I don't 'feel' but I make to-do lists of things that are necessary for me to do to survive. And I hate to choose and make compromises between hair and health and knowing about that product I would most probably add it on my to-do list to research. But what do I know, I haven't been, and dearly hope, never will be in that situation.


And my point is that if people were introduced to the topic of different types of beauty and less "crowning glory" beauty throughout their lives they wouldn't suddenly have to cope with it when they or a loved one was undergoing cancer treatments.

There is an artist called Katarzyna Kozyra and she is making the same point as you are. While undergoing therapy for cancer she took photos of herself depicting her as Olympia, a beautiful, naked woman lying on a bed, as depicted in a painting that was painted by Edouard Manet (Manet himself was quiet rebellious with his painting but it's an irrelevant context here). But in the photos Kozyra is bald and looks exhausted. In another photo you can see her, an old nurse and her medicine being applied.
There is another photo, which is less popular, where it is an elder, naked woman who is depicted as Olympia on her couch at home. What connects all three is a black ribbon around their necks which is also on the original painting by Manet.

I admire her for her bravery and how she managed to make an iconic piece of Polish art that is still shocking to so many people (even though this project is from 1996!).

I would embed the photos but there is nudity so I believe I can't. If you are interested you can find the photos by googling: Katarzyna Kozyra Olympia. Oh and also google Edouard Manet Olympia to compare with the original.

[Angelica]

It's not really that uncommon to see a woman bald now. Many are doing it for fashion statements, but not all of them look good. There are other awful side effects that come with chemo or radiotherapy and so often the patient looks gaunt and very ill. Keeping their hair is a moral boost I think, so if hair loss can be avoided I think all avenues should be explored. Besides which I have heard that sometimes the hair doesn't recover well after treatment. One day hopefully all cancer treatments will be less aggressive with side effects.

[hanyo]

Having long hair is a part of my identity and I wouldn't want to lose it.

I had cancer last year and I was lucky enough to get to do cisplatin when I did chemotherapy. That kind doesn't make your hair fall out.

[Tori Angeli]

One day hopefully all cancer treatments will be less aggressive with side effects.

I've thought before that people 200 years in the future will be horrified that we treated patients with what is effectively poison, as we are horrified with some medical practices from 200 years ago. I really hope that's the case, anyway. I hope they forgive us, then, as people who are living in the time we are given and doing what we can for the sick.

[dulce]

Don't know if this has been mentioned ,most peoples hair grows back after chemo but for some,the hair follicles were permanently damaged leaving them with permanent bald spots.I've talked to quite a few on hair loss forums that this has happened to and they usually end up wearing wigs or getting a hair transplant if they are suitable candidates.So no garantee your hair will grow back ok.It may or may not.