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?
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.
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 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 - coldcaphaircare.com/shedding/.
Good luck with your treatment and the cold capping - hope it all goes well xx
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.
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.
