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Hair loss after 20 days, despite wearing cold cap during EC

12 REPLIES 12
Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Carmen, 

I had eighteen weeks of Paxlitaxel and cold capped throughout. 

I began shedding from week two and the shedding was at its greatest between weeks three and four. At the time I was a bit concerned about it. This concurred with the advice given by Paxman. My hair continued to shed but slowed down considerably. When I stopped the Paxlitaxel, the hair that had shed began to fill in almost immediately.

I lost my eyebrows but they are growing back now. Kept some of my eyelashes. My hair is quite fine but I kept it shoulder length in case it thinned on top and I needed to pile the ends to disguise.

My hair thinned all over so didn't need to do that but I noticed my centre parting got wider and the hair thinned on the sides. To this end I bought wide headbands. I managed without using them but they are a great disguise, if they suit you. 

I think Paxlitaxel is one of the kindest to hair loss, Docetaxel one of the harshest. I still think the cold cap is with sticking with despite the nuisance of staying on the chemo ward for two hours-plus over the actual treatment time.

Hope this helps,

 

Angel Eyes x

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Ellie

Ivd looked at the Paxman site and the cancerhaircare site, and feel more prepared now, and have a face to face wig fitting appointment at Guys Cancer Care Centre in a few weeks.

I’ve ordered a free false eyelashes pack from  Cancerhaircare.com too. Last time I tried applying them I got one eye on okay and just couldn’t get the other set on straight but I’m determined to learn the technique this time.

A couple of years ago I had my rather overplucked eyebrows micro bladed. It was a shock when I first had them done, as they did look rather over dramatic, but I’m really glad I did it as they are much paler now, and will act as a guide for when my eyebrows start to drop out.

Good luck with your treatment going forward.

🌻

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Ellie

Thanks for sharing this - https://www.cancerhaircare.co.uk/ has LOADS of info. I’ll be taking a deeper look over the weekend! xx 

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Carmen, 

Thanks for your reply and apologies that I wasn't clear that I was keen for advice from anyone else reading this thread too. I think I was a bit addled 🤪when I wrote it. Some days are like that at the moment!

I have seen the Paxman videos which are really helpful, I wish my chemo unit had recommended them so I'd seen them before I started! In the last couple of days I've also come across this charity who seem excellent:

https://www.cancerhaircare.co.uk/

They offer personalised advice by telephone, have goody bags to send with headbands and headgear, false eyelashes etc. They also have advice on disguising thinning hair on the website, and a series of youtube videos called "cold cap club" with advice about making the most of cold capping. I found their telephone advice really helpful, mainly ways to change my haircare products to minimise tangling.

I hope your hair stays strong for you! It sounds like you are doing all the right things to prepare in case it doesn't. The waiting game is really hard though. 

All the best for your treatment, 

Ellie

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Suebee

I think most hospitals stopped cold cap option in March lockdown , I started my chemo in July and it wasn’t being offered, but my chemo unit is now offering it again however I think it’s under review due to cases of Covid increasIng again ( my hospital is in an area with extra Covid restrictions ).

Probably your friend would be best asking what’s happening at her unit.

Yes, it’s still round about 2 hrs extra...30 to 45 mins before and 60 to 90 minutes after depending on chemo regime.

hope all go well for your friend

x

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Can I be an interloper to ask a question please? A friend has just been DX'd with BC and is due to have chemo. Are they still offering the cold cap in hospitals? I wondered if they'd stop that to shorten the length of time you're in hospital with the possible exposure to Covid.  Also when I had chemo (declined the cold cap) it added 2 hours onto your stay - hour before chemo and hour afterwards. Is this still the case?

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Ellie

 

I think it must be much harder if you have long hair, as mine was very short to begin with, but then I have less hair to disguise any very thin patches. I apply lots of conditioner before putting the cold cap on, although it meant going home with wet hair. 

 

Did you look look at the Paxman coldcap website, mentioned in a post from Mrs Kettlebell below? If that is the one your are using. If so I hope you find it helpful.

 

Good luck with your treatment 

 

🌻

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hello Mrs Kettlebell

Thank you so much for the information about the Paxman System, really helpful. I’ve just had my 2nd 3 weekly chemo, so will hold my nerve and see what happens before the next time. I’ve been referred for a wig fitting too.

Thanks again and good wishes.

 

🌼

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Sparkle

thanks for your response. My hair is very fine to begin with so I will not have much to cover it with when it continues to thin. But I now have an appt for a wig referral and I’ve bought a few beanie hats and a scarf from Etsy to keep my head warm. Someone also suggested removing the mirrors!

🌼

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Carmen, 

Its really tough waiting out to see how much you will lose. I've been cold capping while on Docataxel and have shed a lot of hair. I'm coming up to round 3 now and really hoping the shedding will slow down as I'm not sure how much more I can lose. My hair still looks OK as long as I style it to cover the thinness on top, but the huge balls of hair that are left in the shower after I've washed it make me cry 😢.

I've got long curly hair and despite following all the excellent advice on the paxman website I still get knots in it. I'm wondering whether to have it cut shorter to minimise this but I think that will make it harder to disguise the thin hair on top, as a basically pile what is there on top of my head in a loose bun and have a hairband round the hairline.

Grateful for any advice! 

Ellie

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

Hi Carmen

I think your experience is normal. I’m also cold capping, and started shedding from day 17.  I’m day 35 now and the daily shedding is starting to slow, but lucky enough that I seem to have shed hair from all over, so it doesn’t show.  I’m keeping my fingers crossed for the rest of my treatment! 

I’m using the Paxman system, and if you are too, they have loads of advice on line at https://coldcap.com and a friendly Paxman Scalp Cooling Group FB page.  I asked the same question as you and the feedback was that shedding happens to everyone and usually begins like clockwork between days 14 to 21 after first treatment. For a lot of people, shedding will be at its heaviest between rounds 2 and 3 of treatment, then it will begin to slow, but it's likely we’ll see some level of shedding throughout.  They also have a blog post on shedding which you may find helpful - https://coldcaphaircare.com/shedding/. 

Good luck with your treatment and the cold capping - hope it all goes well xx

 

Member

Re: Hair loss after 20 days, despite wearing cold cap during EC

It’s normal to only start losing hair after 20 days when on EC and cold capping. That’s about when I started losing hair too. A certain amount of “shedding” happens for everyone I believe, and it doesn’t mean you’ll lose it all.  I’m down to maybe a third of my hair after three EC and capping. I’ve lost all the hair on my hairline where the cap doesn’t fit, though that’s not really a problem as it can be hidden. I’ve also got bald areas and major thinning on top, which is more of a problem. I’m sticking with capping for now, as I’m switching to Paclitaxel which I’m hoping will be kinder to my hair. 

Member

Hair loss after 20 days, despite wearing cold cap during EC

Hi everyone 

I know there are a lot of posts about hair loss but I wondered if anyone had tried an NHS cold cap while on 3weekly EC chemo? I wore the cold cap for my first dose, 20 days ago, but today my hair, which is quite fine and has never been luxuriant, has started to shed a little bit but from all over, as far as I can tell.

I’m not sure whether to give up or carry on with the cold cap? I don’t mind thinning all over, but don’t want it coming out in clumps 😱.  Has anyone got any advice?

 

 Thanks 🌼