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Cold Cap - did it help keep your hair?

Member

Re: Cold Cap - did it help keep your hair?

Digo that's fantastic.....nice to see a positive outcome from all of this. What treatment did u have? X
Member

Re: Cold Cap - did it help keep your hair?

I've now completed my 6 chemo sessions and used cold cap throughout, I'm totally astounded with my hair, I actually can't believe how much I have, my hair isn't patchy or particularly thin, it was the Paxman that was used for me, hospital staff were tremendous and reassured me always. Anyone about to embark on their journey must choose for themselves but I'd recommend to give it a go👍🏼
Member

Re: Cold Cap - did it help keep your hair?

Hi surrey girl. I thought I had to have both. So I've been wearing the horrible sweaty cap and soaking my lovely silk pillow case. I'm going to wash it today for the first time since cold cap on Tuesday. Can't wait. X
Member

Re: Cold Cap - did it help keep your hair?

Hi, I was recommended to get a silk pillowcase as it helps keep your hair & a side benefit is no face creases in the morning! Worked for me. Never wore a cap in bed x
Member

Re: Cold Cap - did it help keep your hair?

Oh really hope I've not put too much on so as to stop the freezing happen. I think I actually put more on this time. I guess time will tell :/ xx
Member

Re: Cold Cap - did it help keep your hair?

Gateshead are just using the paxmam. I took my own paxmam conditioner and they said the paxmam owners daughter had been in and advised that you only need to use a really small amount of conditioner once the water is on. I've got quite thin hair though so doesn't take much to flatten it. And as it's going to well for you, I'd probably keep lathering it on. X
Member

Re: Cold Cap - did it help keep your hair?

Yeah mine is the same, I haven't had ice on my head after either session I don't know if that's a good think or not bit I do out like nearly a half a tub of conditioner in my hair ha. They said they are using a new machine at my hospital and are having great success with it so filled with lots of hope. I found the second session worse than the first for some reason xx
Member

Re: Cold Cap - did it help keep your hair?

And still no hair loss woop woop still got hair paranoia... hoping the cap was fitted as well as last time. I couldn't have the strap as tight as last time as it was making me feel sick but still had it fairly tight xx
Member

Re: Cold Cap - did it help keep your hair?

Everything I read says expect a slump about day four or five? I was really surprised at how easy I found the cap. It was a bit uncomfortable for the first 15 mins, then at some points i actually thought the machine had stopped working. I was amazed to see ice on my head when I was over. I managed to eat through it though ( with difficulty) hoping it was tight enough. I was paranoid that there was a bubble at the back of my head where it wasn't touching. They kept reassuring me it was tight, but I still kept pushing it down. They left it on for 30 mins prior and 90 after. Is yours the same? X
Member

Re: Cold Cap - did it help keep your hair?

And still no hair loss woop woop still got hair paranoia... hoping the cap was fitted as well as last time. I couldn't have the strap as tight as last time as it was making me feel sick but still had it fairly tight xx
Member

Re: Cold Cap - did it help keep your hair?

Well we will be feeling pretty much the same I imagine... I was really tired yesterday but feel fine today and tomorrow I expect my steroid buzz haha. Be prepared u may slump physically and emotionally after the steroids stop. I did last time bit only lasted a few days. I am so hungry too, eat while u want too as much as u can as u may not fancy much later on in the week. How did u find the cap ? Xx
Member

Re: Cold Cap - did it help keep your hair?

Thanks for the tip Kathryn. Unfortunately I'm not on Facebook. I closed it down a couple of years ago. First chemo went well. Felt like I'd been to a rave for a couple of hours this morning, but fine now. Soo hungry though. I'll have to keep an eye on that.
Hope yours went well. Things should be looking good for you if you haven't had any hair loss yet. 🤞🤞🤞
Member

Re: Cold Cap - did it help keep your hair?

U couldn't wear the night cap as found it too hot also. Try a hair net instead I got mine off Amazon for a couple of pound and fits really well and is still on every morning. Are u on Facebook? Private message me your details and I'll add you to a lovely little group we have goinf for people just starting chemo. Made by a lady on here. How your first chemo went ok I had my second yesterday cx
Member

Re: Cold Cap - did it help keep your hair?

P.s. Yes, I mentioned to him there was another lady off the forum due in later and that you were desperate to keep your lovely hair. He says he had six wig fittings that day. The man on reception says they're getting so busy with bc women it's almost worrying. 😳
Member

Re: Cold Cap - did it help keep your hair?

Morning Kathryn.
I've ordered a wig from
Tribeca. He advised, because I've cut my hair so short it wouldn't be worth buying real hair as the synthetic will look just as authentic. So £200 instead of around 500 to 700.
If yours is still long, that's a lot to pull out for something you might not need. Here's hoping you'll keep it all, and if not that you'll keep enough that you won't be able to notice.
I had my first chemo yesterday and wore the bed cap thing last night. I woke up about 3am with it stuck to my head in sweat. 😳 Horrible. X
Member

Re: Cold Cap - did it help keep your hair?

Angela how did your tribeca visit go, he mentioned he's had a lady in before me who's also cold capping... I said I know haha. My hairs still hanging on at the minute so I'm going to wait to buy one xx
Member

Re: Cold Cap - did it help keep your hair?

Hi Amanda, I'm so glad you found my experience helpful, it makes it so worthwhile using this forum! If you need any other tips/support do please let me know. Wishing you all the best in your treatment, and let me know how it goes. If you do need chemo remember it's zapping all those nasty cancer cells!!  🙂Take care xxx

Member

Re: Cold Cap - did it help keep your hair?

Hi Gill... Thank you so much for sharing your experience and tips which has given me hope if I have to have chemo. I am still waiting to hear as I was only diagnosed last Thursday and have been told that I will have a lumpectomy and radiation initially but then dependant on other tests such as my HER2 results they will br able to establish other treatment for me.... dreading chemo as I don't want to lose my long hair (down to my mid back). I hope yours continues to work and that you make a full recovery Gill, take great care of yourself- Amanda xxxx

Member

Re: Cold Cap - did it help keep your hair?

 
Member

Re: Cold Cap - did it help keep your hair?

Haha. I feel like bleeping all of the time
Kathryn. Obviously im having fec-me instead of fec-t. 😳
Hoping tribeca does wonders for us without clearing out the bank balance. 🤞🤞
Member

Re: Cold Cap - did it help keep your hair?

Forgot you can't swear on here.... shame haha. The word bleeped out Is sh*t
Member

Re: Cold Cap - did it help keep your hair?

I'm also there on Monday but at 11.30 has to change it from 10.30 as have pre chemo or I would have probably seen you! Seems it varies with different hospitals with how helpful and how much you get! Trust us to get the **bleep** stick being in the north east! I had my recon done at the qe and I'm really pleased with the way my boob looks though the scars seem a lot redder now im on the chemo xx
Member

Re: Cold Cap - did it help keep your hair?

Hi mishy, yes I'm at the QE. I've had the rest of my treatment there so thought I might as well have it all under one roof. Although apparantly the radiotherapy is only carried out at the Freeman so I'll be there for that, and I would like my reconstruction carried out there as well as I've heard really good things about the plastic surgery.

I had my pre assesment (bloods etc) nearly three weeks ago, it's taken this long to get my ward visit monday 3rd and then straight in for chemo the next afternoon.

I'm cold capping so maybe I wouldn't of been entitled to a voucher anyway. Like you, I'm worried about the gollum look. I not overly keen on wearing a wig either, but I really wouldnt be comfortable wearing head scarfs. I couldn't stand people looking at me thinking 'she's got cancer'. I'm just not brave enough for that.

 

Carole, your hospital sound generous and on the ball when it comes to making sure you have the things you need. I cant tell you the hours I spent trawling the internet looking for advice. I didnt even know what  a softie was until I came home with one boob and wondered how I was going to wear a bra. x

Member

Re: Cold Cap - did it help keep your hair?

I've found my hospitals pretty generous with things.  They referred me to a wig service despite saying I was going to cold cap, which meant I got £120 off price of a wig.  Therefore I only paid £40. It is synthetic but the guy recommended this as it is so much easier to look after, stays in style and doesn't need any styling.  I'm quite happy with it. 

My BCN gave me half a dozen softies after surgery.  Yesterday I had a PICC fitted and they've given me a prescription for the waterproof Limbo cover for showering. That saves me £18 buying one. 

So I've no complaints on this side of things. 

Member

Re: Cold Cap - did it help keep your hair?

Feal the fear are you having your treatment at QE? I'm starting mine at Freeman on 10th having my assessment and ward thing on Monday I couldn't have a voucher either I'm trying cold cap but well aware I could end up looking like gollum so would still shave it off if I end up with baldy patches all over! Not allowed a voucher when cold capping!
Member

Re: Cold Cap - did it help keep your hair?

Hi Kathryn.
Yea, nightmare getting anything. I came away from mastectomy without even a softie. Had to ask what I needed on here and buy everything online. I didn't have a clue.
Apparently I can't have a voucher towards a real hair wig. Only the hospital recommended fake ones. And yes, I've got an appointment at tribeca 9am Monday before my chemo ward visit. 😳
I've heard he's really good too. I know a couple of people who have had his wigs and say they're fantastic. X
Member

Re: Cold Cap - did it help keep your hair?

Can anyone remind me what the cold cap times are for fec, I know it's half an hour before. Im.jjst sitting here thinking and sure mine was only kept on an hour after the drugs, is this right or should it be an hour and a half ? And is this just to 'defrost' the cap wasn't stuck or anything and slid of easily after the cap x
Member

Re: Cold Cap - did it help keep your hair?

I didn't know that about the dry shampoo, I used Batista. I don't know of a chemical free one. Why won't they give u a voucher for that surely it's up to you what you buy! It's a total nightmare trying to get anything from them isn't it. Where are you going for it In going to a place called tribeca in Boldon, supposed to be really good xx
Member

Re: Cold Cap - did it help keep your hair?

Hi Ladies,

My chemo nurses advised me not to use a dry shampoo between washes as they contain lots of chemicals. I found I could manage anyway with twice weekly hair washing. x

 

Member

Re: Cold Cap - did it help keep your hair?

Thanks for the encouragement slowski.
Melia, I'm relieved you're not finding the chemo too bad. Well done for managing only two washes in 26 days. 😳 If I go two days I look like I've been caught in the rain. I'm going to buy some dry shampoo but I'm worried about the chemicals. Really struggling to find any info on what brand I should buy.
I want a real hair wig and apparently Gateshead won't give me a voucher towards that. I have an appointment Monday morning at a salon that does them. Have a feeling it's going to be pricey. Kind of pleased my hair is short now as it might not cost as much. Cancer is expensive. X
Member

Re: Cold Cap - did it help keep your hair?

Hi angela, still not been offered a voucher from my chemo nurses and reluctant to ask again. I've got an appointment at a wig shop on Monday so I'll get a fair idea of prices etc though im hoping I won't need one at all. I go from feeling totally positive and that I'm not going to lose a single hair to I'm going to look like friar tuck! As most say that's where they lose it. I've not started shedding yet but dreading it I'll freak out if it falls out in handfuls. I've only washed my hair twice 16 days since chemo With the help of my mam, I haven't used the shower but used a jug like when I was a kid! I did put dey shampoo on last week as the grease was horrific and I had to go to a party I just sprayed it and left it overnight as didn't want to rub it.. and combed out Next morning. My hair better bloody survive as it's getting treat really well haha. Also the chemo has been fine apart from really tired for a couple of days. It was the low moods I struggled with more, this doesn't seem to be listed as a side effect but everyone I've spoken too said they suffer this... so just to prepare you. I think it's the steroid come down. Good luck for starting let me know how u get on with the cap. Kathryn x
Member

Re: Cold Cap - did it help keep your hair?

I just wanted to encourage you cold-cappers; I shed quite a bit of hair two and a half weeks into my first FEC but that was really the bulk of the hair loss throughout 3 FEC and 3 Docetaxal. I kept about 40% of my hair and now, 8 weeks after final chemo am wearing headbands just to keep it and the new hair in order as its quite fluffly and unruly. I did find it very uncomfortable, although as others have said its the first 10-15 minutes in particular, and I always dosed up with paracetamol beforehand. By chemo 6 I was unsure I could face it again but I did, and with hindsight I'm so glad I did. So don't be discouraged by early hair loss ladies !

Member

Re: Cold Cap - did it help keep your hair?

Hi Melia
I hope you're coping okay with the chemo. Mine starts next Tuesday at Gateshead. I'm also trying the cold cap. My bc nurse says to expect to start losing it around week 4 to 6. She also said most of the ladies she knows who cap lose around 40%. That doesn't actually sound too bad. 🤔
Did you get a back up wig? I remember how determined you've been from the beginning to keep your hair.
Are you using a dry shampoo between washes?
Angela. X
Member

Re: Cold Cap - did it help keep your hair?

*shed not she's
Member

Re: Cold Cap - did it help keep your hair?

Hi I'm day 15 of my first fec, lost no hair as of yet. When should I expect my first big she's? I've got total hair anxiety waiting and wondering :/ x
Member

Re: Cold Cap - did it help keep your hair?

I start fec-t on July 4 and I'm doing the paxmam cold cap. Can anyone recommend a dry shampoo without too many chemicals for use between washes? Thanks
Member

Re: Cold Cap - did it help keep your hair?

Hi everyone,

I have just finished chemo, x4 cycles TC and used Paxman cold cap throughout, as I was dreading losing my hair with the Taxotere. I'm very fortunate that it worked for me. I started with quite thick hair, and I had it cut shorter to a mid shoulder bob to reduce the weight, as advised by my breast care nurse. 

 

Two and a half weeks after my first chemo I shed the most which was quite upsetting, and it was very matted after washing so took ages to untangle with my husbands' help, but after that it the hair loss slowed and although my hair is a bit thinner it isn't noticeable really unless you look carefully. I've since found out that the hair follicles in the growth phase are attacked and as hair follicles are the 2nd fastest dividing cell in the body it's quite normal to shed 2-3 weeks after 1st cycle!

 

It's really important to have a tight fitting cap. Mine was put on for 30 minutes prior to starting the drugs, and left on for 20 minutes after being switched off at the end of treatment, if it's removed any sooner the ice crystals sticking to the hair will pull the strands.

I had conditioner applied before the cap was put on, and bought an empty tiny spray bottle in Wilkinsons to spray warm water before the conditioner in my last two treatments as that's what Paxman suggest.

My breast care nurse suggested using a wide toothed comb - I got a cheap plastic one by Mark Hill in Boots which has been fantastic at detangling in the early days when I used baby shampoo as advised. DON'T!!

I was told by the Chemo unit that baby shampoo contains lots of parabens & chemicals to make it non sting, and to use  Palmers, Simple or Dove. Since I switched to Palmers (I got mine in Wilkinsonss) my hair stopped getting matted & tangled after washing, felt much softer and the shedding lessened considerably. I stopped wrapping my hair in a towel turban to dry it and just pat it,  and let it dry naturally, wash only twice a week.

 

Yes, cold cap is uncomfortable at first, but with lots of hot drinks and chatting to others, plus my husband and something to read I kept myself distracted, after the first session I got paracetamol prescribed and took that as needed. The last two cycles I took 2 xParacetamol 30 minutes before I knew the Cold Cap was starting which worked for me.

 

Hope this helps. I only saw a Paxman leaflet halfway through my treatment, the website is:

www.paxman-coolers.com

 

Good luck to everyone with your Chemo!

 

Gill 

 

 

Member

Re: Cold Cap - did it help keep your hair?

Hello, I'm new here. I life in Belgium and here many breast cancer patients get 4 EC dose dense (this meens concentrated and every 2 weeks) + 12 weekly Taxol's.

 

Normally only patients who only need to have Taxol can have an ice cap. I convinced my oncologist with recent study's to use an ice cap in my case but they have no idea how long it should stay on. (Paxman cooling machine) So they have put it on for half an our before the chemo and 90 minutes after, as they do for Taxol. Please, can any of you who has/had a combination with EC (FEC e.g.) tell me how long it has to stay on? Sue124?

 

I had my second dose of EC 9 days ago. I started losing a lot of hair on day 19 after washing it very gently with baby shampoo as they recommed me. And I'm still losing a lot of hair. I think I've lost already 50% evenly and I have a bad feeling it won't stop. In 5 days I have my third chemo  Man Sad

 

To anser the question: Nevertheless I think it's worth the pain, cold, headache, feeling of nausea! For me it's not about keeping all my hair or not having to use a wig. I would be enormously happy if I had a little bit hair left to camouflage the short hairs afterwards. But I don't think I'll be so lucky.

 

Cath

Member

Re: Cold Cap - did it help keep your hair?

Hi, I've had 4 of my 6 EC chemo cycles and have used the Paxman system. Like others I had my long thick hair cut ear length before it started which, although a wrench, I'm glad I did. It is painful and the first 10 to 15 minutes especially so. Also this pain seems to have increased as my hair has thinned and I too have gone down a size in caps. I estimate I've lost 50% but evenly so it's not obvious to those who don't know me. The condition is not good,very dry and brittle, and I may be overdoing the conditioner As my scalp is flakey or there's residual conditioner - not sure which. Is it worth it? It has been for me - have a wig tucked away in a cupboard which I can't bear to look at despite my partner and friend telling me it's fine. I've got this far so I'm going to continue. But I do wonder after all this is it actually better then to cut it off to allow the, hopefully good condition hair, afterwards to grow. If not I'll have soft hair near the scalp with my current fuzzy stuff at the end! 

Hope this is useful, Sue

Member

Re: Cold Cap - did it help keep your hair?

Hi, I've had 4 of my 6 EC chemo cycles and have used the Paxman system. Like others I had my long thick hair cut ear length before it started which, although a wrench, I'm glad I did. It is painful and the first 10 to 15 minutes especially so. Also this pain seems to have increased as my hair has thinned and I too have gone down a size in caps. I estimate I've lost 50% but evenly so it's not obvious to those who don't know me. The condition is not good,very dry and brittle, and I may be overdoing the conditioner As my scalp is flakey or there's residual conditioner - not sure which. Is it worth it? I have a wig tucked away in a cupboard which I can't bear to look at despite my partner and friend telling me it's fine. I've got this far so I'm going to continue. But I do wonder after all this is it actually better then to cut it off to allow the,hopefully good condition hair, afterwards to grow. If not I'll have soft hair near the scalp with my current fuzzy stuff at the end! 

Hope this is useful, Sue

Member

Re: did it help keep your hair?

I had 12 weeks of Taxol last year and I used Penguin Cold Caps. It worked very well for me - I would say I kept 90+% of my hair. Cold capping tends to work pretty well on weekly Taxol. I know it worked for me as I lost it EVERYWHERE else. It's a pain in the ass - it makes the chemo day long and it caused a lot of neck and shoulder pain in my case. But for me, it was well worth it. I did all of my normal activities and felt mostly fine. And after the 12 weeks, it was easy to move on. Hope that helps. Best of luck!

Community Champion

Re: did it help keep your hair?

Cuteboy, I cold capped for my first FEC treatment and by day 19 I started shedding significantly and developing a thin patch on top. The cap was well administered and fitted.  It gives you 10minutes of brain freeze agony and then numbness which is easy to tolerate. I didn't cold cap again for my next 2 sessions as I personally felt it was too much pain for too little gain. I also decided I wanted to make sure the chemo gets into every cell in my body, especially since the lymph fluid runs under the scalp and I am lymph node positive. I had my 3rd FEC a couple of weeks ago and still have about 40% of my hair (I had it all shaved off after 2nd FEC which makes it easier to manage with a wig). Hope this helps. X

Member

Re: Cold Cap - did it help keep your hair?

Thanks Anne I start tomorrow, dreading the pain but hope I can bear it. I will be following everyones advice x
Member

Re: Cold Cap - did it help keep your hair?

I used the Paxman  1st one  March 2nd 2017  No 4  was  May 4th  I am having the operation  June 16th I found the cap  quite horrid  very  uncomfortable  and  gave  me  a splitting headache I have lost 30% of my hair. not sure if I need more chemo after operation .

Before using the paxman  I had  my hair  cut  from  shoulder length  to  just below chin length  which helped a lot  as my hair  was  heavy  and  thick . I  bought  shampoo and  conditioner  called Korres (  you can  buy  from amazon   ) expensive  but  worth it  . I found  the best  way  was to comb  my hair  gently  with  a large  shower comb ( wilko  £1) when it was dry .  when washing  dont  rub in  and the conditioner  I watered down just  pat it  gently  then rinse  off .  Pat with  a towel then drape this  over  your  shoulder  leave hair  to dry  naturally. I only wash my hair  twice  a week..  The outcome  is  a bit wild  looking  but  at least  I have  some left  . I woud use the cap again.  Hope this helps  anyone who  is like me  wanting  to keep their  hair  . There is no guarantee but  at least  I have  tried .. Good Luck  Anne x

Member

Re: Cold Cap - did it help keep your hair?

Hi Riversidedawn,

Thanks for your previous advice.  I have had 3 rounds of FEC and 2 rounds of docetaxel,  so one left to go on 22nd June.  I have lost 80% of my hair despite using the paxman cold cap.  The nurses used gauze particularly on my crown and a blue scrub cap to prevent ice damage to my scalp.  I moved down from a medium cap to a small cap when I started docetaxel as I guess due to the hairloss it now fitted on.  I am spurred on to continue with the cold cap as there is a 6% risk of permanent alopecia with docetaxel,  but the head nurse at the chemo day unit was unsure whether I should continue.   I am definitely going to try to manage one more time if I can. I had abit of a headache by the end of the last session so I was relieved it was over, I am hoping in 2 weeks I will feel up to it.

 

I was wondering if there is advice on supplements that will help hair growth, the registrar mentioned zinc and selenium.

Any thoughts appreciated,  I too might ask about the tramadol if it doesn't make me too sleepy.

 

Community Champion

Re: Cold Cap - did it help keep your hair?

Blue2 you can wash your hair as normal from now on. Don't colour it for at least 6 weeks after you last chemo.

I am getting my existing hair trimmed ever couple of months until my regrowth catches up. To disguise it I use a topper if I am going anywhere have a look here:

http://www.internetwigs.com/toppers.html

 

The best one for me is the Jon Renau Top Notch but it is expensive - worth it because I like myself far better when I am wearing it plus you don't have to pay VAT if you tell them you have had chemo.

 

This one is also good but cheaper:

http://www.internetwigs.com/toppers/medium-tp-top-piece-.html same thing with the VAT

Member

Re: Cold Cap - did it help keep your hair?

Thanks for all Your help Smiley Happy I've downloaded the leaflet too cheers cx
Community Champion

Re: Cold Cap - did it help keep your hair?

Hi melia

I did wash my hair as normal straight after chemo, I know some ladies have been told not to wash it on the same day - I didn't see this advice so washed in warm water as normal!

I lost may be 50% of pretty evenly all over my head. The majority came out after the first session - quite a lot all at the same time, after that it wasn't really much more than normally comes out when I wash it.

The top of my head was quite thin, so I adopted the comb over look and tied it up into a loose ponytail! The hair loss wasn't really noticeable to strangers.

I did put a soft fleece hat straight after chemo as it was so cold. Also wore hats whenever I went out as my chemo was November to April.

***** add to my list below *****
(sorry, it's finally starting to fade from my memory, 2 years on!)

Put cold cap on at room temperature and freeze it on your head (takes a little longer, but gives a better fit.)
Put gauze over any thin bits to avoid ice burns.
Have someone get it for you - Lots of warm drinks
Blanket for when your temperature drops.

**** Watch this space for updates! ****
Member

Re: Cold Cap - did it help keep your hair?

Thank you riversdawn did you use cold water to wash it immediately? I think I might be scared to touch it straight after! How much hair loss did you have if you don't mind me asking? Did you wear a sleep cap or net for bed xx
Community Champion

Re: Cold Cap - did it help keep your hair?

Hi Linda, please see my previous comments (sorry takes me ages to type on my phone!)

- See cancerhaircare website (stevenage)
- Don't use heat or pull wet hair
- use colour and perfume free products