Yes, at least we’ve managed to get cancer in the winter, ha ha!! We’d have to resort to floppy sunhats otherwise, and theyre just so not trendy !!
Hi everyone
I’ve been following this thread with interest. I started EC on 14th January and used the Paxman cold cap. Day 19 now, and finding hair everywhere and my head is so sore it is giving me a headache.
The cold cap I used was on for 1/2 hour beforehand and 2 hours afterwards, which made the treatment long. I felt very cold even though my daughter kept me supplied with hot drinks throughout. I have treatment 2 due on Thursday but am dreading the cold cap again.
I would like to know - from anyone who didn’t lose their hair - does the sore head continue? and is the cold cap any more uncomfortable with less hair?
If the hair does all fall out - I presume the itchy/sore head stops?
Chrisx
hi everyone im due to start chemo on feb 10 woild like to try cold cap treatment .asked bc nurse few weeks ago abuot this was not keen on me using reg chemo not getting to scalp !but spoke to oncologist who was ok with it . a little unsure on what to do, any suggestions? xx
I have found the sold cap very susccessful with FEC. Am due to have my third tomorrow, and have only had a little bit of thinning - still have a full coverage. I haven’t had a sore scalp - but I take care not to touch it, and have my hair very short - I suspect it is the weight of hair that causes some of the pain. Good luck xxxx
Hello
I have been using the coldcap throughout all my cycles, I will have the fifth one on Wednesday, my chemo regime as been FECx3, and TAXOL x3.
So far I have found the coldcap very succesful,I started shedding the most from the 18th day of the first cycle two weeks into the second cycle, then it slowed down, yes I too felt a burning and sore sensation throughout the cycles, this is when some of the strands come away, I still have a good covering of hair it as just thinned all over, I only brush it once a day, and hardly ever wash it, the less you do to it the better.
good luck x
hi im having fec first ,so reading your comments seems very reasurring i have very thick hair so hope this may help! WILL LET YOU KNOW. XX
hi i have used the paxman coldcap twice with epi,a week after my first treatment my scalp was itchy and felt like it was on fire then i lost lots of hair i still have a covering but under my long fringe i am very thin.it looks ok with a hat with or a headband.i wash it once a week with baby shampoo and do use a cold hairdryer and my hair for a couple of days looks ok.after the second epi my scalp was ok and i have lost hardly any.i have a lovely wig for bad hair days,i am due my third epi on wed.best of luck everyone jackie xxxx
Thanks everyone
angels/finty - I am not as disciplined as you - find it difficult not to fiddle with my hair. My hair is short anyway, so it can’t be pulling - feeling very impatient with it today - even the cat is glaring at me for malting on her!
What I really need is a crystal ball - if I knew that it was all going to go I could avoid the cold cap on Thursday for my second round.
Take care all
Chris x
Chris - good luck for Thursday and whatever you decide to do about using the cold cap again or not - its not an easy decision for you, but what ever you decide will be the right thing!
K x
Hi all… I’m on Day 13 of EC & trying not to panic. The Cold Cap gave me no problems to use but I really dont know whether its working…I’m losing a lot in my comb & yes moulting all over the show but no huge clumps as yet! The condition is dreadful & I’m desperately nurturing it with Botanics shampoo & kind conditioners. I empathise with those who use colors, I’m normally full head blonde & have had lowlights to try to disguise grey roots. I’ve been told not to use any colors while I’m having chemo but if it does hold (big if) I might try that Harmony rinse!!!I feel a mess…Good luck to all trying the frozen head thing…G x
Hi Girls
I just thought i’d share my experience of the Paxman coldcap with you as i’ve done my chemo now.
I had 4 EC and 4 Taxol and used the cold cap throughout.I was told that everyone loses their hair even with the coldcap when they have Taxol - I proved them wrong and they were amazed! My best advice is to get it cut short, if you have long hair. I lost hair on the crown of my hair but just wore a beret and in fact still do as it’s so short still. That said, I never really looked like a cancer victim which was what I wanted to avoid!
Please please please don’t mess with your hair if you’re using the cold cap. Wash it only once a week - dont brush it - I used Simple shampoo and conditioner. The less you mess with your hair the better.
If you can stand it, give it a try girls - I’d not hesitate to recommend it!
Love Loopy xx
Hi everyone, thanks again for the encouragement and advice.
Hair visibly thin on top now - can just about get away without wig/hat but won’t last much longer if it continues to fall out at this rate. Still haven’t decided whether to use cold cap tomorrow - doesn’t seem so much point, but I expect I will decide when I get there.
OH away at the moment - it’s a race to see who will have the most hair when he returns on Saturday!
Katie - thanks, I had been feeling as if I was been the devil and deep blue sea on this - think I prefer your way of thinking.
All the best
Chris
Chris - good luck for tomorrow
K x
Hi
Got through second treatment on Thursday - decided not to use cold cap, by then I had a very thin area on the top of the head, so was close to the point of no return wearing wigs/scarfs anyway.
I was greatful for this decision at the treatment was harder than last time as my veins were very sensitive and onc had decided to give me an extra litre of saline afterwards. My arm still feels quite tender.
But, having changed my medication I am pleased to say that I have had no nausea at all. More tired at this stage than last time - I think that is the Lorazepam so I may drop that during the day after today.
Speak to you soon
Chris x x
Hi, I recently looked into this as was also dreading the hair loss in a big way. I was ready to start the cold cap, but in the end it wasn’t booked in properly for me. However I’ve been told that it would only work with the first part of my chemo and then when I change type of chemo onto the next stage it wouldn’t be available anyway, so I would lose my hair in the end anyway. So all my worry and research about it was really a waste, because it would’ve only lasted for the first lot. I’ve now found a perfect wig and just waiting for the ‘fall out’. Good luck wich whatever you decide.
Hi, I’m new to this forum. I had my third FEC on Monday and have been reading this thread with great interest. It is very reassuring as I have been expecting every week to be my last with hair. Now I feel there is hope. I have been reluctant to book social engagements too far ahead wondering whether I will really want to go in one of my ludicrous wigs or in a turban with penciled brows. Maybe a DVD at home would be more fun. I have been using the cold cap and so far it has helped. I had quite a bit of shedding to start but it has slowed now. I decided not to brush it for as long as possible after my last treatment and am quite enjoying sporting the wurzel gummage look at home. I will probably wear a hat for the school run tomorrow.
Reading this thread makes me wonder if keeping the cold cap on afterwards for longer works better, although by the time treatment is over I can’t wait to get out and get home.
I am also interested in when people lose their eyebrows and eyelashes. Mine are still hanging in there but obviously the cold cap isn’t going to save them.
I have one more treatment of FEC and then 9 weeks of weekly taxol.
Thanks, H
Had my first chemo of epirubicin on the 5th Feb - last Fri - and tried the Paxman cold cap and it really wasn’t as bad as I thought. As someone else said here, it’s uncomfortable for about 10 minutes, after that it’s all numb and you can’t feel anything. The chemo room was very warm but I wore a thick jumper, jeans and boots and kept my coat on for the duration and I’m sure that added to the ‘comfort’.
The nurses covered my hair in conditioner to stop ice forming causing my hair to stick to the cap pulling it out when the cap’s taken off. The cap was cooled down for 3/4hr before it was put on, I had to wear it for 3/4hr before given chemo and then wore it for 2hrs after chemo finished. Boring and tedious but watched ‘Rain Man’ on my portable DVD so bearable. I usually wash my hair 2-3 times a week as it gets greasy, but now only combing it once a day and will wash it only once a week. Already it’s plastered to my head and looking pretty manky - at this rate it will be a relief to wear a nice clean wig!
Trouble was, I get the impression from the nurses that it isn’t really successful. There’s no comments from them to say that yes, some people save at least 50% of their hair, more like ‘Well give it a go, anyway’ which doesn’t inspire me with confidence, but I’ll use it again next time - that’s if a load hasn’t fallen out by then!
I had my hair cut short last week (which was a low point) in another attempt to hang on to it.
Hi Steph
I found the lack of support for the cold cap quite off putting too, but i think its because they do not want to give ladies the impression that it will definately work for them, I do seriously think it depends on the type of hair you have and the success can be very hit and miss. However, I do think they could be a bit more encouraging! I am so pleased I kept it up, every session I swore I wouldnt do it again! But now I am at the end of chemo I am so pleased I did.
Good luck and I hope it is sucessful for you 
Dena x
hi ,im starting chemo on 17th feb im booked in for cold cap its good to hear that its not to uncomfortable , im taking a good book to read as ive been told its a good 2 to 3 hours extra wait , but if you get good results im sure its worth it .! will keep you posted chris. xx
hi all, hav just been to assesment today n hav been measured 4 cold cap. had nightmare with bloods wouldnt part with much. hopefully better veins on thursday. wont let me take my hot water bottle viruses n stuff, will will just wrap up. rozita xxx