We are Macmillan. Cancer Support
Hi Girls. Am due to have my first FEC on Monday. Has anyone used the cold cap? Does it work? Any feedback on experiences would be really appreciated!
Thanks. Carole xx
The cold cap has a 50/50 chance of working. I was in the 50% that didn't. However, I don't regret using it. I managed to keep most of my hair just before my 5th cycle. It started falling slowly just before my 2nd cycle but at least I kept my hair for most of the time. I cut it short twice and as my hair was curly, people didn't notice my patches, in reality people were saying how good I looked with my new haircut. Just before my last cycle, my hubby shaved my hair and it was tough but as I dealt with it slowly it wasn't a shock for me but I think it depends on how you deal with things.
I think it was good for me as your body goes through so much that keeping your hair for longer helps you to feel more normal. I lost my body hair just before my 2nd and it was good not to have to shave LOL. After that I used headscarves and my two wigs - was lucky enough to get one like my normal hair and one short from my sister.
You have to stay for longer when having your chemo and you might have headaches because of it I only had it the first time and if you do have it take conditioner with you as I helps to draw out humidity from the folicles and also so your hair doesn't get stuck onto the cap.
I finished my chemo at the end of Jan and my hair is growing now, looking forward to stop using wigs and headscarves now.
Hope it helps,
Thanks Susy.... will give it a go and see how i get on. Will defo take conditioner with me.
Hope you are doing well and making good progress in your recovery!
Glad to help :)
First time the nurses forgot to tell me to take conditioner and my hair was completely stuck to the cap as it froze! I also took a hat or had a hoddie as my hair being curly looked like a mess, more of a hamster's bed !!!!!!
I am making good progress, just went back to work -part-time for now - and really enjoying going back to normal and looking forward to the future.
All the best for Monday xxxx
P.S: If you suffer for constipation like me (it was awful) there are some natural chewable cubes really good. I was given Senna on my 2nd cycle in the hospital but it didn't work. Then on my 3rd cycle they gave me the syrup thing really sweet that I would have to take almost half of the bottle to have some bowl movement so I gave up. Then I discovered this cubes they are from Ortis an are called Fruits & Fibres and after my 3rd cycle I started take them on the 1st day of chemo and it was a relief!!!!!
It is good to fo feel "normal" isn't it. Even for just a few hours. I work with young kiddies....it is such a relief to be with them, tiring but good fun.
Pleased you are making good progress......little by little
Thanks for all your advice.xx
You are a little ahead of me....
Good Luck , let me know how you get on.
Take care xx
I used the cold cap but it didn't work for me and I could tell by the 2nd FEC that it wasn't working. I've just had my 4th FEC and still have some hair although it is very thin and am glad the cap helped me keep my hair a bit longer. I have 2 wigs and bandanas and wear these when I go out as my head feels cold and I still want to look like the 'normal' me again. I never used conditioner on my hair as my hat was a different type but it was still very cold!
Do give it a try as it does work for some women and you might be one of them. You can get the NHS wig in ready in case you lose your hair or you just might have thinner hair for a few months.
I just wanted to say that the cold cap worked for me. I always hear on this site that it doesn't work and just wanted to let you know that it can. I did however have a very thick head of hair and my actual hair was thick.
My Tips are
1. Make sure you have the right size cap. It must touch the top of your head. After my first session of FEC my hair started to fall out in clumps and I was very worried that it wasn't working. At round three I found out that I had the wrong size cap on by this time I was very thin on top but had a great comb over :-)
2. Don't wash your hair in the morning of treatment. You will need to wet it and put conditioner on it just before putting on the cap. I used the same amount I would have if I was washing my hair.
3. make sure its a non smelling conditioner, after my first round I can no longer smell Dove conditioner :-( even now 8 weeks past my last chemo I can't stand the smell.
4. Some one told me on here to take a painkiller 30 mins before the cap was put on. It helped wonders with the headaches. I forgot the first time around and my headache was really really bad.
5. Really really tighten the strapes on the hat the closer to your head the better
6. Wrap up warm its freezing under that cap. Putting something warm around your neck will help..
7. Grin and bare the first ten mins it true that your head just goes numb.
8. Wait ten mins after the cap is turned off before taking the cap off. it will pull at your hair if you don't.
8. Take a really warm hat for when the cap comes off. I kept my on for probably about 4 hours after as it helped with the headache.
9. Don't wash your hair for at least two days after. I used a hydrating shampoo after to try and keep it healthy looking.
10. don't panic if your hair is falling out. Mine fell out all the way through, but by round 4 it started growning back :-)
11. Been really gentle with your hair. It really thins your hair and weakens the roots. The less you touch it the more that stays in. This also goes for the shorter it is the less weight you have pulling on the root.
I hated all 19 hours that I had the cap on and wanted to give up on it at every round. Now I am now glad that I had my husband holding my hand tight and telling me I could do it. I just recently had my haircut one because i looked like I had a mullet and two all the new growth was sticking out everywhere making me look like I walked through a bush backwards every morning, so I had it all cut to one length its very short but I know it will all grow at the same time now.
Good luck and hope all goes well.
I finished my chemo in May last year (3xFEC and 3xTAX), and used the cold cap with pretty good results. I was fully prepared to lose my hair (well, as prepared as you can be) but I never even wore my wigs! Shame really, they were really lush ;)
I agree with everything TMJ said! The only things I would add would be:
I used the cold cap through my 6 doses of FEC and it worked really well for me.
Yes it is freezing cold, but after the first 20 mins i kinda got used to it and try to find a warm place in the department where you have your treatment, ie not near a window as you will feel very cold. Take a warm jumper with a hoodie with you to put on after wards.
I did still find handfulls of hair when i either washed or combed my hair during the treatment but you would not notice now, my hair is just a bit finer.
I used baby shampoo and washed my hair as little as possible, ie not even once a week.
Good luck carole, do persevere with it if you feel it is right for you, but do make sure you have you wig ordered just in case, and i always carried a bandana in my handbag right through my chemo just in case.
I too used the cold cap, and have had 3x fec so far. I completely agree with all the advice above too. I also take a blanket with me and after about 20 mins, i don't even notice the coldness of the cap. So far its worked OK with me, i have lost hair, above my ears, and a lovely patch right at the front on top of my head, which i cover with a thick head band.
I used the cold cap through all 6 FEC and only felt cold during the last 2. I lost a little hair around the crown because they put a cloth over that bit to protect it from freezing.
The upside is it means you look 'normal'.
The downside is it means you look 'normal' !
Be prepared for people to forget you have been through the trauma that is chemo if you don't lose your hair because everyone is so tuned into chemo patients being bald. Its great for not having to explain to those who don't know you but means you are far more likely to be treated as fully operational by family and work colleagues almost immediately because 'you look so well'!
Would I do it again? I haven't made up my mind and hopefully won't ever have to try!
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?