Tiny1 - I’m gutted for you too. I don’t understand how with a National Health Service, things like this can be available in some hospitals and not in others! Good luck for your first chemo tomorrow though
TeeCass - I lost underarms and down below within 2 weeks of first chemo, then some head hair the day before second chemo but not really that much. I’m now a week before fourth chemo and still have eyelashes and thin eyebrows. The wigs now are great, I was a bit worried about mine blowing off with it being winter now but I’m pleased to say it’s never budged lol.
Gill13 that’s great you’re able to use it, good luck for your first chemo too. I’m assuming it must be soon?
You could maybe check with your hospitals as well to find out if there’s a ‘Look Good Fell Better’ course near you. It’s great and they give you loads of make up tips and a fab goodie bag at the end xx
I use the cold cap for my first cycle of chemo unfortunately for me it didn’t work. Within 14 days my hair started to fall out in clumps and a week now after my second cycle I am now bald. I thought I would struggle with the hair thing but you know what women are made of strong stuff! I tried scarves but I think they make me look ill. I now have a wig called Audrey and although sometimes we fall out, Audrey and I are becoming good friends. I had so much hope for the cold cap but hey hair grows back and as my dad said “his won’t”. Keep strong x
Hi all, I finished my chemo nov 2010, I used the cold cap my hair thin’d a little,and went very dry one good thing was I lost all body hair so if I hadn’t used the cold cap I would prob of lost my hair x
Oh Twinkle that is a shame, was it the Paxman?
I used it on 4th Oct.My hair is shedding a bit but not sure if this is cos I’m not brushing it or not.
I’m sure it will get thin.
I have a great wig but it looks a bit too perfect so have bought lots of hats to put on the top of it!
x
I used the Paxman cold cap for the first chemo but after 2 weeks my head had loads of bald patches & hair was coming out in clumps. I gave up then & got OH to shave it all off. I do wonder if the cold cap fitted properly though ,in hindsight i should have got them to check it. It didnt seem that tight so if u are going to use it make sure its the right fit for u, don’t be frightened to question them, its your hair not theirs.
For me, my hair coming out in clumps was far more distressing than actually shaving it all off. I’ve got a lovely wig & don’t regret my decision, my hair was looking so bad that i would have had to wear scarves all the time anyway, at least this way i can go out in my wig.
Good luck to everyone trying the cold cap though, i definately dont regret trying it, hope it works for u
Does anyone know at what stage eyebrows & eyelashes start to go?
I’m 5 weeks after my final chemo and discovered a tiny bit of stubble on my eyebrow area yesterday. SOOOOOOO excited!! Can’t stop stroking them and looking in the mirror to see how they’re getting on.
Gulp ! day 20 (sounds like Big Brother)after 1st chemo session using the cold cap.
Scratched behind my left ear and got more than i bargained for…lots of hair! Is this the start?.. i was expecting it from the crown from what ive read from other peoples experiences on here.
No choice of cold cap for me either, they have one (donated) but the staff haven’t been trained to use it yet. It wasn’t even mentioned until I asked but what annoyed me is, they know I’m going to lose my hair so why leave it till 6 days before I start my chemo to discuss a wig, then tell me I have to pay the £61.85 prescription charge in cash (or cheque) before I can get it. I have a 40 mile round trip for each appointment and the nearest wig clinic is in the same city. The nurses have been brilliant with my treatment but I do feel they have drip-fed the information and every time I’ve asked anything all I get is ‘oh they’ll discuss that at your next appointment.’ If it wasn’t for this site I wouldn’t know half the things I need to and they could take a lot of stress out of our situation if they gave us more information at the start specific to our hospital, a checklist of things to do would be great. I’d resigned myself to the hair loss but I really feel for anyone who’s at the same hospital and was hoping to use the cold cap.
The nurse did say that it is the placement of the cold cap that is paramount to it working effectively, so if it doesn’t feel right ask them to check it.
TeeCass - I have just had my 2nd FEC, using cold cap. From about day 18 of no 1 I have been shedding quite a few hairs if I run my fingers through and there a few every morning on the pillow. No one else would be able to see the difference as I have thick hair but it’s definitely more than normal. Mine started above ears, crown not so much so, and not in clumps or anything so I am still quite hopeful.
Hi to all.
Just wondered how the hair thing is going as some of you are abit further ahead then i am.
Like many of you said, i started shedding about day before my 2nd FEC
so many thanks for the warning, it was much better knowing to expect it.
day 2 after 2nd FEC now and i am scared to death to wash it tomorrow!
I have created my own cold cap at home (sitting with abg of frozen sweetcorn on my head!!
Are everyones eyelashes and eyebrows hanging in there??
Is anyone due to start tamoxifen after chemo?? im scared about that one!
hi TeeCass
i was interested to read about your home made cold cap of sweetcorn (not on cob i take it! lol) i’m going to be trying the cold cap and i assumed that you only needed to keep head cold whilst you were having actually having the chemo, was this recommended to you? and are you using alopecia shampoo?
hi gill13, no not recommended-just desperation really!! i pop it on if i feel my scalp start to burn and it eases it. I also bought eye masks and put them in the fridge/freezer thinking yhe theory might apply to eyelashes and brows!
i was only recommended herbal shampoo, please tell me more about the alopcia shampoo, i thought that was for after?
good luck with the cold cap-think warm thoughts
xxx
Hi Teecas & Gill13. My eyebrows and eyelashes are still there although a bit thinner and that’s me getting chemo 4 tomorrow I think it’s different for everyone but I just try and not touch them and try not to wear mascara every day so I’m not pulling at them with makeup remover. Same with the hair, while it was long I was only washing it twice a week. Now it’s short I wash it every day but don’t use any products/hairdryer/straightners etc. The alopecia shampoo I’m using is Natur Vital (£10ish from Boots) and Natur Vital tonic (£20ish) every 3 nights. I’ve used that from the start - maybe that’s what’s helped my hair grow back so quickly? God knows! I’m due to start Tamoxifen as well but I’m already on Zoladex injections now so the hot flushes etc are all quite normal for me I’m like a walking, talking hot water bottle (without the fluffy cover) lol.
Caroline x
Ps I’ve ordered some hair thickening spray from the internet yesterday, it apparently covers your thinned bits. I’ll let you know if it makes any difference, I might have been better saving my money and buying shoe polish haha.
TeeCass, it was Carolines post when she 1st started this topic where i’d seen about the alopecia shampoo, i’ve seen some in boots, £5 for the shampoo and £10 ish for the tonic, not sure of the make, but it was on the shelf not behind the counter
eyemasks are worth a try too, my shopping list just keeps getting longer!
Well as I couldn’t use the cold cap due to hosp not having one I’ve got myself a wig which is real hair and gonna b same colour even down to roots showing through a bit and being cut into same style, so hopefully no one will ever know unless I tell them. Start my chemo tomorrow.
Hope everyone is doing well.
Tiny1 that’s great! I wear my wig every day and was lucky to get something which is more or less an exact match in colour and length - when I tell people it’s a wig they’re usually shocked! And the big bonus is it takes no time at all to get ready as the hair’s already done xx
Gill13, Caroline.m,Harriet
Thank you so much for all your help and comments.
I have bought the alopecia stuff from boots an washed my hair in it last night.
I am 9 days after my 2nd FEC. I have realised that i am quite bald behind my ears but as my hair is shoulder length it is covered.
I have just been to see my very straight talking GP for my flu jab and she said i probably will lose it :((( boo hoo, didnt want to hear that.
Am scared to death, was convinced i would only thin??!!
How is everybody else going?
I wore my wig to my OH sons 18th birthday party-hated it, i would rather wear the cold cap for 4 hours!! His daughter relentlessly asked him why i was wearing a wig and as a result we have split up because i told him to tell her it was none of her business but he wanted to tell her everything and i have kept it a secret from most people :(( ARRGGHH was feeling so positive, sorry for whinge.xxxx
My onc told me the cold cap wouldn’t work and that I would lose all of my hair- but I proved him wrong! I have thinned and never had to wear a wig, but I did wear half headscarves and headbands to cover up my grey roots!! I will post a pic once I’ve dyed the roots (I know I’m not meant to- but am going to risk it).
I used Simple shampoo and conditioner all the way through.
And I know it’s none of my business and there were probably other things going on in your relationship…but if your OH’s daughter could tell you were wearing a wig (and let’s face it, none of them are like our ral hair - in fact the good ones are often too good and better than our real hair) of course she’d ask why. And this is a big deal and maybe your OH is always open with her? I can guarantee that telling a teenager that something is none of their business will raise hundreds of more questions! That said, I do know how you feel as got pretty cross with my husband at the start for what he told people - but mine was the opposite - I was quite open about my diagnosis, but when people asked him how I was doing he told them that I was going to be fine (think he was trying to persuade himself) so while I was terrified, I had people writing to me saying they were really glad that all was OK etc which made me feel as though my worries were being belittled. It’s really difficult and we all deal with things in different ways, but you will feel better about people knowing later on down the line when you have maybe come to terms with it yourself
Anyway, enough sticking my nose in there!! Hope you’re OK and prove that GP wrong with the cold cap!
