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Why don't more women use cold cap

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Susanmanchester
Member

Re: Why don't more women use cold cap

Hi Shelly 

I have now finished chemo and O did keep most of my hair just lost a bit at the side ... so for me it was definitely worth it . Appreciate not for everyone all the best with your treatment x 

Shelly10
Member

Re: Why don't more women use cold cap

Hi, I had bc 10 year ago and I tried the cold cap for half an hour, then I couldn't take anymore. It was awful.  2 years ago I was dx with secondary bc with bone, liver and omental layer mets. I didn't even bother trying the cold cap. When my hair started coming out I shaved it off. I prefer to wear scarves. I have loads to go with different outfits and tie them all different, everyone tells me I really suit them. I tried a wig years ago but only wore it once. Didn't feel comfortable at all. I too have lost my nose hair and have a constant runny nose, so annoying lol. My eyelashes are thinning out, I just hope I don't lose anymore, I will be devastated. Haven't lost it from anywhere else though, which is a shame. Hope your cold cap works for you. Good luck ladies.x

Alvilajo
Member

Re: Why don't more women use cold cap

Hi, I'm going to give cold cap a go. I really don't want to lose my hair but I have bought some Levi bandanas just incase 😘 I don't think a wigs for me but might change my mind x

Susanmanchester
Member

Re: Why don't more women use cold cap

Just had my last FEC of three now on to Taxol low dose weekly in couple of weeks so Day 46 still hoping to keep most of hair .. my oncologist was v positive but you are right it probably depends on regime whether it works or not 

blueash
Community Champion

Re: Why don't more women use cold cap

I used the cold cap with fantastic results - it thinned a bit but nobody would have know I had chemo. I just took a pain killer half an hour before.

 

That said some drugs and doses are better suited for it than others. I was on all docetaxel and carboplatin (plus Herceptin) at a standard dose. My doctor and the nurses said to give it a go BUT a woman in my unit had triple negative and was on a much higher than average dose of FEC and they told her not to bother.

 

Obviously it won't work if you don't use it but it worked well on me.

riversidedawn
Member

Re: Why don't more women use cold cap

Jaybro,  hairloss is a funny old thing. It's the unpredictabilty, the unknown that makes it a challenge. How many have shaved, or no.1 then find they have a full head of very short hair. Or others, like me, hang on hopefully, 6 sessions in and still have a pretty good head of hair, bit thin, shorter than normal but doesn't stand out in a crowd. Do I need tomorrow's wig appointment? Will I wake up on Wednesday with no hair? Will I find it goes in 6 weeks? ....... who knows but as time goes on I'm tempted to take control and cut it, just so I know!

 

I've lost nasal hair if my running nose is anything to go by, eyebrows and eyelashes still pretty normal, under arm hair very slow growing, lady garden had a sudden moult but still there, good old leg hair hanging in there and just check arm hair looks a little finer as do the few stubborn chin hairs! I remember last time my eyebrows and lashes waited til after treatment had finished then they went off to party elsewhere. 

 

We need a crystal ball. I'm sure there are a lot more skinheads, scarf and wig wearers than necessary just so they feel in control.

 

My unit did offer the cold cap at my pre-chemo orientation and again was given the opportunity several times at my first session. I knew that this time it wasn't for me but urge others to give it a try.

 

 

Susanmanchester
Member

Re: Why don't more women use cold cap

Entirely personal  agreed just wanted women to know that it can help and heading into week 5 towards last FEC still have most of my hair and eyelashes have actually grown with top of scalp showing new growth . Very lucky in U.K. We have options as in US costs thousands of pounds 

Anniej
Community Champion

Re: Why don't more women use cold cap

Great that it's working for you, Susan, but a very personal choice. Just too much time added to my chemo to be bothered with it. Losing eyelashes and eyebrows however .........

Susanmanchester
Member

Re: Why don't more women use cold cap


@Jaybro wrote:

I chose not to use the cold cap because it wasn’t guaranteed to work so I wondered if the suffering was worth it - and it added so much time to each treatment. It didn’t feel fair to all the friends who’ve driven me to appointments, chatted me through it all and safely delivered me home to expect them to add another two hours minimum to the tour of duty. As it is, my 90 minute Paclitaxel sessions have lasted 5 or more hours sometimes as they take the blood on arrival and have to wait for the results before making up the drugs. I thought I could handle losing my hair and got a brilliant wig after my first EC, so close to my own colour and style. I then got my hairdresser to give me a no 6 buzzcut as clumps were already sliding out and I flounced around like and ageing Annie Lennox. However, I wonder if I jumped the gun? My oncologist said I would definitely lose all my hair by the second Paclitaxel session but, at session 7, it’s still there - a fine halo of white hair, obviously determined to prove him wrong. And I prefer going around like that (with a beanie for outside) than wearing the wig which has only had three outings! I feel more myself.

 

For me, losing my eyelashes has been more demoralising, as a girl of the Sixties who used to paint on additional lashes  with eyeliner, but by far the worst has been the rapid and complete ‘alopoecia’ in my nether regions. The absence of pubic hair makes me feel infantilised, unhygienic and, worse, I had no idea how bloody useful the stuff is in directing pee where it should go. Now it chooses random routes, often several at the same time, usually covering an extensive area including buttocks and always necessitating yet another wash! No one warns you about the little things! And why does leg hair remain? The very thing we most would like to see the back of. 


My sympathy we get bloods done day before so less time ... but still three hours for me . It is 10 minutes of intense cold but not so bad after . Try Sudocrem for the lady bits and best of luck ! If it is any consolation spend most days now obsessing re hair .. cold cap not for everyone 

Jaybro
Member

Re: Why don't more women use cold cap

I chose not to use the cold cap because it wasn’t guaranteed to work so I wondered if the suffering was worth it - and it added so much time to each treatment. It didn’t feel fair to all the friends who’ve driven me to appointments, chatted me through it all and safely delivered me home to expect them to add another two hours minimum to the tour of duty. As it is, my 90 minute Paclitaxel sessions have lasted 5 or more hours sometimes as they take the blood on arrival and have to wait for the results before making up the drugs. I thought I could handle losing my hair and got a brilliant wig after my first EC, so close to my own colour and style. I then got my hairdresser to give me a no 6 buzzcut as clumps were already sliding out and I flounced around like and ageing Annie Lennox. However, I wonder if I jumped the gun? My oncologist said I would definitely lose all my hair by the second Paclitaxel session but, at session 7, it’s still there - a fine halo of white hair, obviously determined to prove him wrong. And I prefer going around like that (with a beanie for outside) than wearing the wig which has only had three outings! I feel more myself.

 

For me, losing my eyelashes has been more demoralising, as a girl of the Sixties who used to paint on additional lashes  with eyeliner, but by far the worst has been the rapid and complete ‘alopoecia’ in my nether regions. The absence of pubic hair makes me feel infantilised, unhygienic and, worse, I had no idea how bloody useful the stuff is in directing pee where it should go. Now it chooses random routes, often several at the same time, usually covering an extensive area including buttocks and always necessitating yet another wash! No one warns you about the little things! And why does leg hair remain? The very thing we most would like to see the back of. 

Susanmanchester
Member

Re: Why don't more women use cold cap


@mini mad wrote:

Hi Susanmanchester,

i mentioned to my bc nurse about the cold cap and because i have frequent headaches,  she advised against it.  This might help someone on here..  good luck ladies 💖💖


My BC nurse was also  not that positive but oncologist said it had good success rate and getting through the 10 minute brain freeze was the hardest bit and that is certainly true . Fully understand if people suffer severe headaches migraines etc probably not a good idea but really is bearable after initial freeze and they slap water and conditioner on hair to make it easier . All the best x 

mini mad
Member

Re: Why don't more women use cold cap

Hi Susanmanchester,

i mentioned to my bc nurse about the cold cap and because i have frequent headaches,  she advised against it.  This might help someone on here..  good luck ladies 💖💖

Susanmanchester
Member

Re: Why don't more women use cold cap

You too my roots at the sides and forehead now white ( not surprising ! ) all the best x 

Badboob
Member

Re: Why don't more women use cold cap

Glad I made you smile 😁😉 Not any easy journey is it? I am the same age as you, so my issue is what colour will my returning hair be! 🤪 After years of hitting the bottle 😉it’s going to be interesting.........Best wishes for your journey 😘

Susanmanchester
Member

Re: Why don't more women use cold cap

Thanks for the reply which made me smile and yes my nose is dripping ! As I am 61 a lot of body hair is gone already ! so wasn't too bothered re that . We all have such different regimes and difficult issues to deal with so in a way I suppose my hair obsession had distracted me from wider anxiety ( which also on meds for ) but one thing we all share is determination and resilience - and I do have a wig on standby ! 

Badboob
Member

Re: Why don't more women use cold cap

I took the decision not to cold cap. My hospital were keen for me to go ahead, time or money was never an issue, just my well being. Even at my first session they made it clear it was not too late and if I had changed my mind then I could still CC.

 

So why didn’t I? Well, my understanding is that the results are not guaranteed. I would rather have certainty rather than worry about if my hair was going to fall out or not. I reasoned I had enough to worry about! It would add an hour to the treatment, not a problem with FEC or EC as that is relatively quick. But I also had 4 seesions of Docetaxel, Perjeta and Herceptin which took between 7 and 5 hours! Plus 3 x EC. So a long haul. 

 

Remember, you will loss all of your other hair, perhaps surprisingly to hardest hair to lose was, wait for it....my nasal hair! Why? Because your nasal  hair, to be blunt, stops your nose dripping. I got completely fed up with the constant drip drip drip for 7 months. It is such a relief now it’s back! 

 

In the end it a a personal choice absolutely, no right or wrong, just what suits you. Being bald sucks, but so does having BC and losing a boob! At least 8 weeks post chemo I have a 5 o’clock shadow! Hopefully in a few months I will be able to show my new pixie cut to the world! Good luck with your treatment. We are all here for you.

Susanmanchester
Member

Re: Why don't more women use cold cap

So sorry to hear that and it may well happen to me and I feel an utter wimp saying this but for me it is the hardest thing as I remember my Mum losing all her hair many years ago in chemo and I was traumatised . It nearly tipped the balance between me having chemo or not which I know is foolish but not going to feel bad about that . Hope all goes well for you xxx 

Daffydilly
Member

Re: Why don't more women use cold cap

Hi all, I used cold cap through all cycles of chemo in hope of keeping hair but have lost at least 3/4 and is still falling out 5 weeks later. Would still try again if the need ever arose, but with more realistic expectations.  Yes it works incredibly well for some, but is devasting when it fails and you’re not expecting that. I still find it the hardest thing to come to terms with!

Susanmanchester
Member

Re: Why don't more women use cold cap

Hi well that is my point really . The equipment is costly and chemo takes three times as long because you have to stay in unit before during and after chemo with fridge on your head ! That all impacts on NHS resources however the mental trauma of BC is horrendous and for some ( not all I do get that ) losing all their hair or the prospect of in chemo just might persuade them not to - I was given the option of just going for rads and hormone therapy but chemo improved my odds enough to grit my teeth . Part of my fear was the hair loss which may sound trivial just want no-one to make a decision which might endanger their life on that basis and hope one say they come up with a foolproof system . At moment I reckon quite understandably some hospitals may be underselling the cold cap simply because of cash issues but our mental health is just as important as our physical well-being 

kathyx
Member

Re: Why don't more women use cold cap

It's free for patients but that doesn't mean it doesn't cost something.

Susanmanchester
Member

Why don't more women use cold cap

Just had 2nd chemo FEC and was absolutely determined not to lose hair as like many women to me the thought of being bald was just horrendous TBH almost as much as DX and so doing my damndest not to . So far ( early days ) no hair loss just slightly different texture but hair on top of scalp actually thicker and the cold cap IS tolerable if you stick it out for first 10 minutes . Frankly I wonder if some hospitals do not 'sell ' it v much because of cost and extra time it takes  but my oncologist at. the Christie said very much worth the effort so just putting in a plea to more of you to give it a go . I admire the ladies who go straight for the funky wigs and scarves but a lot of us just can't face it and  I think the CC gets a bad press and often dismissed as waste of time perhaps in some places on cost grounds more than evidence  . It can and does work for many and here in UK it is free !  Tip - cap must be v tight and slather hair in water and conditioner