Chemo is most probably going to be recommended for me and I’m absolutely dreading the hair loss. I haven’t asked my breast nurse whether the cold cap is available as I think I would be quite happy to endure it, although I’ve no idea how long it would have to be worn, etc. Any thoughts or advice?
I believe there are a couple of different types of cold cap and that the the length of time you wear it depends on the type of cap and also the chemo regime you are having.
I’m currently having FEC and use a cold cap that is basically a cap shaped freezer pack. I wear it for about 30 mins before treatment, during chemo and for another 30 mins or so after the infusion has finished. The cap is changed for a new one out of the freezer as soon as it starts to warm up from my body heat.
It is uncomfortable, especially when first out of the freezer, like a bad ‘ice cream headache’ but I don’t find it unbearable. The type of cap I’m using doesn’t require your hair to be wetted so I don’t look a state after it comes off! From what my chemo nurse says I believe this type of cap is less ‘severe’ than others, I guess that means it could be potenitally less effective but I still think it’s worth trying.
I am due my 3rd FEC in a weeks time and I still have a full head of hair. It has thinned considerably but is not noticable to anyone but myself and the rate of hair loss seems to have slowed down over the last few days. Since it seems that many people loose most, if not all, of their hair around the time of the second FEC I’m hoping that it’s a sign that the cap is working for me and I may get to keep my hair throughout, or at least enough to avoid it being noticable if I wear hats and scarves. So far I’ve only needed a hat to deal with the winter cold which is more noticable with thinner hair!
I would definitely recommend at least trying the cold cap if it’s available - nothing ventured, nothing gained.
I should mention that I had quite thick hair prior to chemo so that may be helping.
Linda
xx
ive done 2 FEC and tried the cold cap first time. I had my hair cut really short before i started.
Unfortunately, it didnt work for me, but i would say, in my exerience, i am pleased i tried the cold cap, cos otherwise i would always have wished id tried it. I was told it was about 50-50 if the cap would work or not.
I used to be wayyyyy upset about the thought of my hair going, but once it’s gone im coping ok mostly.
eva
I’ve had my last chemo the beginning of Dec and wore cold cap all through my treatment. It’s cold and heavy. Not very nice. Especially with me having to take my glasses off, which means I can’t see very well.
I also had it on for about 30 mins before treatment, during chemo and for another 30 mins after. They kept changing it as well.
All the endurance for me has been worth it because I still have a head full of hair, though it thinned quite a bit.
A few tips might be helpful:
If you decide to go for the cold cap, I found having a hot water bottle helped a lot to keep my body warm. Anyway, if you find it unbearable, you can always stop it later.
My nurse recommended me to get babe shampoo and wash hair with the palms of my hands rather than the fingers of hands.
Hope those helps and all the best with your treatment. Take care
I would thouroghly reccomend the cpld cap, I have had 4 cycles of FEC and used the Paxman Cold Cap on all occasions, it has worked very well, I haven’t really lost any hair at all and it has been absolutely great.
It is hard though, they put the cap on about 30 minutes before they give me the chemo, then I have to leave it on for 2 hours after the treatment. Once its switched off it is left for about 30 mins then removed. I have to have my hair dampened and then covered in conditioner, once on the cap creates a cold seal. It is really uncomfortable for the first 11 - 15 mins, then your head goes numb and it is bearable. One the cap is removed my hair is frozen doe a few minutes, but just take a hat to wear til I get home.
tips for survival - 1. take 2 paracetamol about 30 mins before they put it on , 2 take lots to read as it is a long time to wait, 3 use very mild shampoo and conditioner after wards to help keep your hair healthy.
The worst think is the first 15 mins, I havent had the ice cream headache yet, but I think that is dowm to the paracetamol.
Everytime I say that I wont do it again, but it is nice that I have kept my hair, it may not be as smooth and lovely as it was and may look a bit like a haystack, but it is my haystack and its nice to have it!
Give it a go when it works its great!
Thanks so much for your replies. When I next go to clinic and told I need chemo (I’m working myself up for the worst and then it’ll be a nice surprise if not needed!), I now know what sort of questions to ask - that’s if it’s offered at my hospital. Good advice about the paracetamol and glasses. I’m very shortsighted and usually wear specs, but will pop in the contacts for the chemo! Although, that’s a thought - do chemo and contacts go well together?
I wear contacts too but find that my glasses have been used more since starting Chemo, my eyes do get a bit itchy and sore and I have found that my contacts do not seem to give me as good vision as I had with them before. I read somewhere that the chemo can cause your eyes to deteriate a bit but that it gets better after chemo has finished. it does certainly feel that this has happened to me.
You are right to expect the worst, I was told initially I would just have radiotherapy and it was a shock when they told me that chemo was on the cards for me. I would have preferred to have been prepared for it and then told I didnt need it than the other way around!
Whatever happens, its good to be as prepared as you can, its not a nice experience but as a lot of ladies say it is doable, just take one day at a time.
Dena xx
It’s a pity Dena, you were told you would just have rads and then not. I was originally informed that it would be rads only if the nodes were clear, unfortunately the sentinel node wasn’t so now going for axillary clearance this Monday. It’s just the thought of eventually going back to work still wearing a wig…
i was originally told i would have radio after my wle. But then the size of Larry the Lodger (the name of my cancer) was bigger, so i am have having 6 fec and then 15 radio. Really big shock at the time,
eva
Hi Ladies…I’m joining your discussion because I start ECT on the 19th…Slightly bothered by the fact most of you seem to be on FEC…Anyone else doing ECT ?? I’m going to try the Cold cap for sure so your comments are so helpful. My Oncologist wasnt thrilled but said I should have my hair cut short if I wanted to try it. My hair is shoulder length after many years encouragement!! Any views ladies? I feel that cutting it short would be tantamount to losing it anyway!! If I’m going to lose it fair enough & obviously if it falls out partially will do the sensible thing & crop it but now!!! My hair is thick which I know has pros & cons, good that if it thinned noone would know but not so good if cold cap contact is reduced…Help!!
Grace x
Grace I think short helps - it will thin though so be prepared - there are lots of great stories about it. I myself gave up after 3 goes but I had EPI so the cap had to stay on for 1/2 hour before treatment and then during treatment and then for 2 hours so it was quite an ordeal - different regimes have different timings.
wishing you all the very best. xx
Grace, I’m due for my third lot of FEC next week. Like yourself, I was dreading losing my hair and chose to have the cold cap.I will admit that it’s torture, especially the first 15 minutes but after that your head just seems to go numb and you get used to it. Anyhow I’ve stuck with it and touch wood I still have a full head of hair, it hasn’t even thinned. I’ve always had very long hair but the day before my chemo started I had it cut into a much shorter style (not cropped). You’re advised not to wash your hair so often, or to use a hair dryer so I figured that short hair would be more managable.
Good Luck!
Hi All,
I first had chemo 4 years ago and lost all my hair. When I was diagnosed again, I really wanted to give the cold cap a go - but unfortunately my hospital doesnt provide it.
So, im hiring the Penguin Cold Cap myself, the chemo unit have been very supportive, and leave us (my sister + friend) to do it all ourselves. It is a logistical nightmare, and I certainly couldnt do it without my sister (in fact, she does it all, I just sit there and endure it!oh, and pay for it!). The company who provide it have been fantastic - I have it for 40mins before chemo (arrive at the hospital with it on), during the chemo, then for 3 hrs afterwards - but go home as soon as the chemo finishes and carry on at home into the evening.
It is quite painful for the first 5 mins, then becomes fine. The caps have to be at -30 degrees when they go on and changed every 30 mins. I have just had my 3rd dose of taxotere, and so far, so good - i lose some when I wash it, but nothing that causes me any concern. I only wash my hair once a week, dont use products / hair driers / straighteners, so its not looking its best as you can imagine. But for me, its worth giving it a go.
We are all very different, we all worry about different things and we all cope differently - as one of the chemo nurses said to me recently - you just have to do what is right for you.
So, if anyone is using the cold cap - good luck and I hope it works for you!
K x
I had my first fec on the 17th December, i used the cold cap, but not the Paxman type…
Unfortunately it did not work for me and my hair went after two weeks post chemo.
I was then told that the cold cap would not work with the taxatore anyway, so i didn’t bother with it during my second cycle.
I think it can be great if it works though!
Naz x
i too have tried the coldcap and found the first ten mins a pain with the brain freeze,but then it was bearable not as bad as i thought.i am washing my hair every 5 days with baby shampoo and so far am losing hardly anything,my hair dosnt look its best and the high lights i have are growing out but at least its still there,i am on epi at the moment and then go on to tax so i am pleased it worked for you,lets hope it works for me as i know i will hibernate if lose my hair,although i am going for my wig tues just in case,best of luck jackie x
Thanks so much to all of you…So much experience to draw on. I’m assuming the ECT I’m doing is the EC part of FEC plus then 4 cycles of Taxotere which Katiefizz is having? I’m only just getting my head around this!! Also interesting to read that Naz was told The Cap wouldnt work with Tax & it is working for Katie!! Naz I’m sorry to hear it didnt work for you though. Katie what a performance you are going through …Can I ask how long your hair is??
I’ve been warned any type of dye/colour is out of the question. Is everyone in agreement?
Muck love to all G x
Hi Grace and Jackie,
It is a minefield, isnt it?!
And yes, its interesting that Naz was told it wouldnt work with Tax, but if you research any of the cold cap sites, that is a drug that is listed as being suitable for the cold cap.
It is a bit of a performance and I certainly couldnt do it without my sister - but its been made more complicated because the hospital dont provide it … if its done by the staff, its not such hard work because they have the equipment on hand.
Ive read success rates of between 20% - 90%, so really variable. I guess the colder it is and the longer you can tolerate it, the better the odds of it working. My hair is shoulder length and quite thick. I would recommend you do as little as possible with your hair - certainly no colours / treatments. Im just getting used to it being curlier than normal and a little wild - quite like the fact Im not spending time or money on it at the moment!
Let us know how you get on,
K x
I had very thick waist length hair which I cut to the middle of my back. I had 4xFEC,4xTax and wore the coldcap throughout. I was attacked just after my first taxol by a raving lunatic so will never know if that was the reason all my hair fell out as I’d still a good head of hair after the FEC!
oh my god josyemarie I should think you really needed that!! How dreadful …Katie/Josy thank you for the comments about hairlength.It really is a minefield. I rang my Cancer Centre this morning to see if the nurses could advise & was a little shocked to be met with “I’ve never seen a lady keep their hair”. Well clearly none of you lot live in Wigan!!
Apparently they have the caps in the freezer & they are replaced every 20 minutes.I get the impression that in other centres the caps are “wired in”…am I right? I also suspect the wired in ones might be more effective.I was further concerned to be told that I only have to keep it on 20 mins after the treatment which sounds much shorter than some of you guys are suggesting.Perhaps this is why they are not successful !!!
Yours in frustration G x
Hi grace59
As I mentioned earlier in this thread I’m using the type of cap that is kept in the freezer. From what I’ve read it does seem that it might be less effective than the wired in type but I’d also say that it’s potentially more bareable to use so less chance of giving up on it.
When I go for chemo I have infusions of steroids and anti-sickness meds before the actual chemo drugs and I put the first cap on at the same time as the first infusion is started so that by the time the chemo starts I’ve been wearing the cap for about 20-30 mins. The chemo itself takes about another hour and then I wear the cap for a further 30-60 mins. The cap is changed every 30 mins so I get through 5 in total.
I’m now 4 days since my 3rd FEC and still have a full head covering of hair, I don’t need scarves and don’t own a wig. I wear a hat when out walking but only because it’s cold. My hair has thinned, especially towards the back on top but if you didn’t know what my hair looked like normally you wouldn’t see anything odd about it.
I have no underarm hair left though (all departed very suddenly overnight a few days before 2nd FEC) and I’m quite happy to do without that - a small bonus to this treatment!
Give the freezer caps a go, they can work and you’ve nothing to lose by trying!!
Linda
xxxx