I am due to start 16 weeks chemo (every two weeks). I have been offered the cold cap but I don’t know anyone who’s ever had it. Is it painful to have? The onc. said it adds an extra 2 hours before and 2 hours after treatment. If you’ve had the cold cap would you say you found it beneficial? x
Hi JelloH I cold capped through mine, I had 4 EC & 4 Paclitaxol. For EC it was an extra 30 before and 90 after and for Paclitaxol it was 30 before and 60 after.
it’s very cold at first but you soon get used to it and a paracetamol an hour before really helps.
I ended up losing about 70/80% of my hair so it didn’t work as well as I’d hoped. But, my hair was already growing back by the penultimate chemo which it wouldn’t have had I not done it. At the end I found it quite tough to sit there for another hour waiting but I’m glad I did it.
my advice would be to give it a go, if you don’t do it from the start you can’t suddenly start it so it’s all or nothing. If you can’t handle it then you can stop but at least you know you tried!
Thank you! I’m having the same treatment as you’ve had - the four of each.
I’m just a little worried I guess more that once I’ve had the chemo that I’ll just want to get out as quickly as I can rather than know I have more to sit through. But then I think it’s only one day twice a month
I wonder if I’ll regret not doing it x
Thank you for sharing your experience
I won’t lie, by the 7th one i struggled, I didn’t want to do it anymore. It’s really tough sitting there for several hours with no one to talk to (we weren’t allowed to take our partners in!) but like you say, it’s twice a month and I’m glad I persevered. But I appreciate it’s not for everyone.
Hi I decided not to go for cold cap as I wanted to be in and out as quickly as possible.
I did start to lose a lot of hair by the second week and family member shaved my head soon after as I found it disconcerting to be pulling out handfuls of hair and find it to be everywhere.
It’s purely a personal choice of course.
Hi I used it for the first 2 sessions (out of 8) but unfortunately it didn't work for me and I then started losing handfuls of hair so I had to stop using it. However I do know a few people who it worked well for and they retained a lot of hair. It really varies for each person and the type of chemo etc.
I'm 2.5 years on from chemo now and my hair has grown back really healthy now. Good luck with it all x
Hi there ,I am due my 3rd EC chemo tomorrow and have cold capped the previous 2 . 3 weeks back I posted when I was having a total meltdown with hair coming out .After first EC ,I had 3 weeks with no hair coming out ,then it just went crazy .the weekend after 2nd EC my hair was just coming out in what seemed like handfuls .it was all over the place and it was so depressing as well as upsetting .Although you get told cold capping may not save all the hair it still doesn't prepare you for looking at a sinkful of your hair .On the Monday I was in floods of tears ,and in the afternoon I took scissors to it to try and reduce the long strands everywhere. I went on the Wednesday to a wig supplier to use my wig prescription, and got a nice bob wig as convinced I would have no hair left and that cold capping did not work .Anyhow over the last few weeks ,even though there is still some hair coming away ,now I have calmed down to look at it objectively, I reckon I still have probably40% hair left .it's very thin on top so put on a hat when I go out ,or a scarf if people visit us indoors.The fringe and sides are still reasonably full ,.So ,I will carry on with coldcap as looking at it more calmly ,I would have nothing there if not using it .Yes it's uncomfortable, the first 15mins as it cools are worst ,then you sort of get used to it.There is hanging around after,mine was 90mins ,but chemo day is such a long day anyhow it doesn't make much difference to me .I think with hindsight I would have had hair cut pretty short beforehand so I don't have the chopped around look that I now have .Mine was just a shortish bob anyhow, but surprising how long those strands are when they come out everywhere
so sorry you’re on here! My experience is pretty much the same as Caff1… im about to have my 4th dozytaxel/carboplatin next Tues.. I’ve cold capped for the first 3 & although my hair has really thinned & few baldish areas on top, im glad im doing it & I’ll carry on… it’s also supposed to help with regrowth so even if I loose the majority I’ll probably use it for all 6! It’s not as bad as I thought it would be ..I had a little tidy up with my hairdresser this week ..like a pixie cut so made me feel better! I wear a scarf, band or hat when I’m out ..
good luck! I’d say try it ..if you don’t like it at least you’ve given it a go..& if you want to do it.. have to try it from the first one ..x
wishing you all the best! X
Hi! I used it - but I kind of regret using it. It certainly reduced hair loss but it gave me a Bill Bailey look !! It also meant I had to slowly watch it fall out which dragged out the emotions. After the 2nd round I just shaved it off - I felt sooo much better!! It meant that i could manage my scalp better, my hair would grow back in one length and I wasn’t getting emotional every time I combed my hair. No right or wrong choice here…no harm in giving it a go - Xxx