I had my 2nd Fec today. Cold cap was so much colder than the 1st time as i have now lost quite a lot and it is much thinner. The 1st ten minutes were not very nice then it settled.
I have to say i came home from treatment today and was so hungry have not stopped eating since i came home, came on the forum to distract me from eating the contents of the fridge.
Lynn im glad you had your chemo, is your cold any better? Did you find the cold cap a little harder this time?
Good luck to everyone using the cold cap.
Tricia
Tricia, My chemo was cancelled because I still have a cold. It has been re-booked for next Monday which seems a long time to wait but I wasn’t given a choice. The only good thing is that I am getting my wig on Friday and if my hair keeps falling out at its current rate I wont bother with the cold cap next week. Well done you for persevering.
El Katrano, it is interesting to know the 60% sucess rate for the cold cap - I was just told sometimes it works and sometimes it doesn’t, I wonder how much hair you hav to keep for them to say it has worked?
Best wishes, Lynn x
Hello Ladies,
I finished x6fec 2 weeks ago and used the cold cap throughout, now my hair was fine to start with and i ummmmm and arrrrrd before treatment started as to wether or not to use it, then my son said ‘mom whatever you are left with is more than what you would have it you didnt try it’
i had my hair cut short and treat it like glass, only washing it every 5 days with simple shampoo and conditioner, i dont use products or a hair dryer and i sleep on a satin pillow case…
Now the verdict has it worked???
yes although very thin, to the extent if much more comes out i may get a blad patch on top, and i have thinned all over but my head is covered.
the thought of loosing my hair/lashes was devastating to me, i do wear ‘sally’ (wig) when i go out as i cant style my own hair yet but when im in my house i look fine…
its a very individual choice, for some people loosing there hair is not so important, but to me it was, and im so glad i kept it up…
it may be a while before i can style it again but i have hair on my head which means so much to me…
take care
love and hugs
Donna
xx
“El Katrano, it is interesting to know the 60% sucess rate for the cold cap - I was just told sometimes it works and sometimes it doesn’t, I wonder how much hair you hav to keep for them to say it has worked?”
Hi Lyn - good point, didn’t ask them that, presumed it meant all of it to be honest.
I loved my hair and found the idea of losing that the most awful thing and the most visible sign of cancer.
Unfortunately for me it started coming out very visibly and it was really awful seeing these huge long clumps coming out everywhere, all over carpet, pillow, bed, getting mouthfuls of it in sleep. Thats when I made the very personal decision to have it all off, as it was getting too traumatic for me and I couldn’t forget about it when it was happening all the time.
It’s a really personal choice all of this and how it’s dealt with - but I did just want to say, though I’ve had my moments of feeling unfeminine with a big bald head and feeling unattractive, I still think that it’s not as bad as I imagined it to be, really it isn’t.
Another thing I’ll say is that its sometimes nice to be able to control the heat of your head, when it’s hot I can just whip off my jersey beanie that I wear at home and under scarves for padding. When it’s cold, on goes the beanie, or the scarf, whichever. I used to hate getting a sweaty head when I had hair 
But yes, I’d rather have my pride and joy hair back thank you very much 
Its the fear of the unknown as well that doesn’t help. xxx
Hello!
Has anyone tried the cold cap with AC and Paclitaxel accelerated treatments? My onc said it wouldn’t work…but the paperwork my BCN gave me (from the Macmillan website) says it can reduce hair loss…
x
Hi everyone,
reading this thread is so inspiring and helped me so much. I am due to start chemo this week - 3 x FEC, 2 x TAX and still unsure about the cold cap.
My onc advised me to try it but something my BCN said is bothering me. She told me that if any cancer cells have made their way upwards the cold cap will not allow the drugs to “zap” these cells. I am not sure of the correct medical terms but she basically advised me against the cold cap. When I asked the ONC about this she said if any cancer cells has strayed anywhere they will never go upwards, only down towards the lungs/bones/liver/
Does anyone else know anything about this.
Thanks and good luck to everyone during their chemo
Katie x
HI Katie
I was also told by my BCN against using cold cap for the same reason as you i.e chemo wont treat my head area. I am having 1st appointment for treatment plan with ONC on thursday so i will ask him/her what they suggest and ill let you know.Good luck with your chemo
Dawn x
Hi Katie Im due to start my chemo in a couple of weeks & I was also told by my BCN that the cold cap would prevent any cancer cells that might have travelled to my head from being “zapped” so I wasn’t even going to consider using it cos I want to get rid of this horrible disease,so im trying to come to terms with losing my hair.Does hairloss happen with all chemo used to treat breast cancer?xx
I asked my breast care nurse, my oncologist and the helpline at Paxman about this and was reassured that due to the temperature that definitely wasn’t the case (can’t remember the details! A yes or no was all I wanted!). I was concerned as I thought the brain was one of the organs affected by BC - brain, liver, lungs, bones…?
I don’t know. Surely they wouldn’t offer it if it was possibly detrimental to our health?? (Or is that me being naive…?)
I was never discouraged by my consultant or oncologist not to use the cold cap… and brain cancer was never mentioned as a possible problem… having said that just had my second EC and am losing my hair big style… I think its doubtful I’ll keep it, so the wig is being delivered and will be on standby. I was told today there are no guarantees it will work for everyone … and I’ve followed the instructions to the letter . C’est La Vie. x
Hello ladies
I have just had FEC 3 With cold cap have lost about 60% of hair, but still have hair all over just thinner. I have found the 2nd and 3rd Cap treatment very painful, but if you distract yourself by reading have a hot drink this pain goes in about 10 to 20 mins then really is ok, or should i say was for me, as i know we all have different reactions. I have found leaving my hair down was making more hair fall out. I now wear and loose scrunchie’s and put my hair in a loose pony tail. I have had less hair fall out and i hardly comb it. I also find my hair looks tidy when it is up as i can’t straighten it or style it. I hope you all have success or enjoy how long you hold onto your hair for. Oh i have also stopped using baby shampoo and use a Ph balance shampoo from the health shop then apply conditioner to help with less tangles. I think this makes a difference. Hope this helps, we all find different things that work for us, but i have had less hair loss since changing. Good luck if still trying the cold cap. Tricia x
I still can’t open the freezer door without thinking of the cold cap. Good luck to all of you using it. My hair is now growing at a rate although I could have done without the curly sheep look lol! X
Hi Ladies,
just wanted to reassure you all re brain cancer and cold cap.I was worried about the link and asked my bcn -she replied that it doesn’t target the brain cells in that way as there is no difference between people who use the cap and those that do not-not sure if that is true but have given the cold cap a go and although i am losing 10-15 strands a time and it is def thinning i still have a full head of hair (FEC X2 due on Mon).IO did get it cut short and do all the usual (wash twice a week using simple products comb hair using hsands only etc) but hopefully it seems to be working:)
Hope you all have a good day with few se
Marie x
I had scalp cooling in 2013, it was awful the first time and thought I was going to die!!! A girl next to me said if you can endure the first 10 mins it’s not so bad, if she hadn’t have told me this I would definitely not have carried on with it, each chemo session was difficult as it prolonged the time you were at chemo and you knew what to expect !! But all in all it was worth it to keep my hair. You do have to look after your hair, no washing, brushing etc for a few days after chemo and you sort of think my hair looks crap anyway so why bother. But I did keep most of my hair, it thinned out a lot but I could disguise it with headbands etc. worth it if it’s something that is upsetting for you x
I will be starting chemo in the next 2 weeks not got the actual date yet. I’ve decided to give the cold cap a go. The thought of loosing my hair is devastating and I’m finding it very hard to come to terms with although I’ve made an appointment to get a wig fitted this week, but dreading ever needing to use it. I am 39 years old with long blonde hair which I love. If all goes well with chemo I should finish the chemo just around my 40th birthday. Deep joy!!! X
Finally got the dreaded call to start chemo. Next thurs 25th June. Keeping in mind everyone’s tips I’m hoping it all goes well. Feel ready to get on with it thanks to you all for updating us about your own experience. I am 39 years old with long blonde hair at the moment. Planning to have it cut to above my shoulders early next week. Dreading the cold cap but need to try it for my own vain reasons. Silly I know but the hair loss is worst fear has been since diagnosis and only seems to be getting worse Xx
Hi sazza38
That made me laugh!! Maybe a snow suit is not a bad idea lol. The chemo mix I’ll be having is fluorouracil, epirubicin and cyclophosphamide ( not sure if I’ve spelt them right) so the tip for the sweets to suck on is noted thanks. One more sleepy night and that will me starting my journey. Sounds weird but so glad to get started. I’m as prepared as I’m ever gonna be. Hair being chopped tonight to around shoulder length. Hoping I don’t like the style to much as might not have it for to long, but like I’ve said before I’m not giving up my hair without a fight. Here’s hoping I’m not fighting to hard xx
Not bought any headbands yet, have choose a few bandanas on that Anna badana website tho. Haven’t ordered them secretly hoping I won’t need them (fingers crossed). That sounds promising about your hair, hope you manage to hang on to it. My eyebrows have been desperately needing waxed for around 3 weeks and I’ve been hanging on to them also lol. Thanks, I’m totally ready to kick some a*** xx
Hi elkatrano. I used cold cap last summer for all 6 sessions lost approx 70% of hair mine was long. Had it cut to shoulders i would reccomend cold cap still i know its painful i did mind over matter technic. I invested in good wig a bobstyle with few highlites i got loadsa compliments people who didnt know about my illness loved it.Now a year on i have a lovely hair cut trendy grown thick with gold highlights. Stay strong take each day as it comes. Love jules.