Cold caps
Cold caps I am starting my first chemo on Thursday (paclitaxel/gemcitabine) and I’m wanting to try the cold cap.
I put my name down for it when I was at the hospital yesterday but the nurses seemed to be trying to put me off.
They are saying the treatment I’m starting on takes 3 hrs plus I’d have to have it on for half hour before and an hour and a half afterwards (includes a little extra time because I had a perm a month ago) and they don’t think it’s feasible. My partner was also trying to put me off. Not sure if that’s because he’ll be sitting there for hours…
I felt like saying I’ve managed a 40-hour labour, I can do this, but I really don’t know what I’m talking about.
I’m not sure I liked the bit about wetting my hair first… Won’t that put icicles on my follicles??? Maybe that’s the idea.
I’ve got 2 young children under 5 so I’m thinking if there’s any way I can save my hair it will be easier on them.
I’m also wondering if there’s a sort of pain threshold with it and once you get past there you’re so cold/numb it doesn’t matter so much? If so, how long does it take to get to that stage?
Thanks
mousy
It’s worth a try Hi Mousy,
I think you should definitely give the cold cap a go. It didn’t work for me (my hair fell out 3 weeks later!) but I have spoken to a few women who still have their hair.
It is a bit of a pain because you’re in longer. My cold cap was a kind of crash helmet thing the nurses changed every half hour and I didn’t need to wet my hair beforehand so maybe yours is different. It is very cold to begin with and uncomfotable but you do get used to it quickly.
I hope it works for you.
Rashpal
x
Give it a Go Hi Mousy
I would say definitely go for it - the extra time in hospital is nothing like the trauma of losing all your hair - especially with children.
I had it and I admit it was uncomfortable but I did not lose all my hair although it did thin quite a lot. I think this saved my sanity as I could not have handled total baldness given the mental state I Was in.
Dont let the hospital put you off just to make things easier for them!
Love
Alise
Thanks. I did see the caps when I was there. They looked like cycle helmets attached by hose to the refrigeration units. Sounds the same as you describe.
Oh well, maybe the thing to do once I’m getting the meds and everything looks to be going OK is to send my OH to Burger King or, better still, home… He can some back later to pick me up. I think he’d prefer to be at home on his PC to be honest…
mousy
Hello Mousy
don’t let the nurses or anyone put you off. Definitely try the cold cap. I have to say it didn’t work for me as my hair fell out anyway but I see loads of women in the chemo clinic who use the cold cap and who have lost almost no hair.
I found it uncomfortable for about the first 10 minutes but after that I got used to it.
Having your hair wet isn’t a problem - it just makes it work better.
Good luck.
Love Anthi
Hi Mousy Hi Mousy,
I wasn’t offered the cold cap at the unit where I have my chemo so was not in the uneviable position that you now find yourself in, deciding whether to have it or not. Personally I found the whole hair loss thing to be quite traumatic and I could’ve well done without it (as I’m sure we all could!). I know the cold cap doesn’t always work but it could be worth a try.
The only thing that would prob have put me off would be the extra time you have to spend in hospital. If you can stand the thought of spending the extra time there then go for it!
Take care and let us know what you decide,
Kelly
-x-
Cold Caps Dear All
I have my first chemo session on Friday and intend to use the cold cap and have been encouraged to do so by the hospital staff. I would go for it Mousy as it can prevent or minimise hair loss, although I do understand it doesn’t work for everyone.
Could someone tell me whether you lose your eyebrows/lashes if you do lose your hair? I can’t seem to get an answer about that one.
Thankyou
Cecelia
Cold Cap Hi Mousy,
I also tried the cold cap with my first chemo and I didn’t like it much as it was so cold I shivered through all the time I was there. When I got home I had a terrible head ache and wasn’t looking forward to using it again next cycle but thought I would persevere with it.
Unfortunatly my hair started to fall out two weeks after my 1st chemo and I had to start wearing a head scarf before the 2nd cycle, so I didn’t bother with the cold cap.
I have hear others on this site say their hair only thinned while wearing the cold cap so if you can cope with it I would give it a go.
Best wishes, Michelle.
For Cecelia Hi there,
I lost all my hair from all parts of my body which is great not having to shave your legs, pits etc.
My eyebrows where just a few hairs but my eyelashes didn’t go completely.
Michelle.
Thinner but clinging on! Hello,
I’m 2 weeks after my second FEC and used cold cap and still have full head of hair for now. It has been shedding, but I’ve got so much of the darned stuff that my friends have all been saying it looks great now, less bushy and wild I guess!
It is thinner around the crown and I think in a few days if I have another burst of loss like I did day 14 after the first one I’ll have to wear a hairband or something, but for now it’s good so give it a whirl. At least you’ll know you tried it instead of wondering if it would have helped. If the extra time and coldness are too much you can always ditch it for the second one.
xx
Eyebrows and eyelashes Hi Cecelia,
my hair fell out after my 2nd chemo however thankfully my eyebrows and eyelashes are still hanging on in there and continue to do so! I haven’t had to pluck my eyebrows for ages now, so they’re obviously not growing, but they don’t seem to have thinned too much. Haven’t noticed and difference in my eyelashes, hurrah! I
I still have to shave my legs, but much less frequently. Weirdly though, I can not remember the last time I had to shave my arms (pits that is!),
Hope this helps,
Kelly
-x-
Hi Mousy
I used the cold cap for 4 AC and 4 taxotere and managed to keep my hair. It thinned quite a lot especially towards the end but I would say I was definitely pleased I persevered with it. It was a little uncomfortable especially the first 20 minutes or so and the time seemed to drag but all worthwhile not to be bald!
However, I was told by my hospital that if I had picletaxel instead of taxotere (they are similar apparently) then I wouldn’t have been offered the cold cap as the time taken was too long and would have stopped others having the opportunity of using the cold cap.
Good luck with the chemo on thursday.
Love Lollie x
Good luck for Thursday. I have had my first chemo today and did have the cold cap. Actually I had 4 as they were kept in a freezer and had to be renewed regularly. The first 10 minutes each time was rather unpleasant and by the 4th I was shivering all over. I didn’t get a migraine though which the nurse thought was likely as I do get frequent migraines. My head still feels odd but I don’t know whether that is the chemo or the cold cap. Until I read the other answers above, I was thinking of not persevering, but I guess I will wait to see whether I start to lose my hair in 2 weeks time.
All the best
Anne
My hair’s already quite fine so maybe that makes me one of those more likely to lose it anyway???
mousy
cold cap Hi Mousy
I used the cold cap for 10 cycles of chemo and still have a full covering of thin hair. I had really long thick hair and for me keeping some was a better idea than losing it all.
My first four cycles of chemo was taxol that took 4 hours to administer and I had to have the cold cap on for half an hour beforehand and two hours afterwards. There were times when the nurses were packing their stuff up to go home and close the day unit whilst I was still sat there but I didn’t let it put me off. Don’t let anyone or anything stop you giving it a go, especially not time!
The cold cap that I used was like a tight fitting swimmimg cap with a tube attached. I too had to have my hair wet, I was also offered conditioner as well but declined. The reason I was given for wetting it was to help it fit better and the conditioner was to stop it sticking to my scalp. When they take it off your hair will be full of icicles but I used to let it defrost before pulling it off.
You do feel very cold at first and I used to get a splitting headache but your body gets used to it after about 15 minutes. I did wrap myself in blankets and used a heat pad as well.
Good luck with it and fingers crossed that it works for you.
Love
Chanel
I had 6 cycles of chemo and treid the cold cap for the first one. It was n’t unbearable and I coped fine with the cold. It’s not the most flattering thing to wear- I looked like Chubby Brown. It did n’t work for me. My hair fell out about 3 weeks after the first cycle. I did n’t lose my eyebrows or eye lashes, or any ahir on my arms, but it went everywhere else. There’s not harm in trying it. If it’s not for you at least you’ve given it a try.
Regards
Geraldine
I’ve only had my first session of chemo (Epirubicin) 2 weeks ago and went for the colp cap… the one that’s attached to a machine to maintain a constant temperature. It was on for about 20 mins before, during and 2 hours after the treatment. Maybe I was lucky, but I found it completely bearable… no headaches, a bit chilly, but easy to ignore after a while. The down side was that you’re sat there forever, but in the big picture of things, what’s an extra 2 hours and it’s surely worth the try.
They didn’t wet my hair first and I never got offered the conditioner some of you are mentioning. A new nurse helping out on the ward did try to take it off, at the end, without letting it thaw first… I stopped her, yelling as soon as I realised my hair was being pulled out… she should have let the machine cool for 15 mins first, then remove it… aagghh!
It’s too early to know if it’s having any effect… fingers crossed! I’ve read some of you start losing hair about day 14, which will be tomorrow, so am anxiously inspecting the pillow every morning!
Keep smiling…
cold cap I’de try the cold cap - Ive only done it twice so far but didn’t find it as bad as I was expecting. Take a nice warm jacket with you (and plenty to read). One thing i was pleased about was that they CAN unplug you without a lot of hassel if you need to go to the loo! The first ten minuits are definatly the worst (a bit like plunging your head in a bucket of snow!). Oh yes and ask the nurse to switch you off and defrost you for a few minuits before removing the cap - otherwise it really rips your hair out. good luck
Thanks for the “thawing out” tip…
I do find myself wondering whether they were trying to put me off so they could have the chair clear by 1pm for another patient…
mousy