I know I posted this on another thread but I thought I would widen the question, and maybe this will help other who might have the same doubts as me? Or perhaps it is just me…?
I have been offered the cold cap but can’t decide whether to use it or not. My bcn has said I will definitely lose my hair if I don’t (but I did read one post from a lady who said she kept a short fuzz…)
It extends the treatment by two hours, is uncomfortable and doesn’t guarantee that you will keep your hair. I have a lovely wig lined up, I feel that hair loss is one of the more manageable side effects of chemo (doesn’t make you feel poorly)… All these incline me to say, to hell with it…
But will regret it? When I am feeling crxp in the middle of the winter, my skin looks terrible and I have had no sleep…
Any comments form anyone who had similar thoughts , or good and bad stories of the cold cap would be gratefully received
My experience - it is the greatest item of torture invented by man for woman to suffer - but is worth it I promise - I lost a lot of my hair but kept some, and now it’s growing back - SO slowly!! - I look at it and think at least I had a ‘head’ start.
It first goes on - not too bad - then the cold starts to take effect on your head - the first 20 minutes are hell on earth - I was screaming and swearing for someone to take it off. But my chemo unit had a complementary therapist who sat patiently with me massaging my feet, telling me I’d gone another minute and just to go one more for her… and after 20 minutes, I could bear it and I’m so glad I did. It’s not easy, and it delays the time you’re in the unit as you say because of the need to cool down beforehand and stay cool before and after - I recall longer than 30 minutes after so be warned - this seemed to vary from nurse to nurse, but it can be worth it.
I was told with FEC T that if my hair survived the FEC I shouldn’t have problems with the Tax (in that respect!), and they were right - it was thin and straggly but after some scissor work by my hairdresser it looked OK and now it’s coloured and everyone keeps telling me how good I look - and I don’t think I’d get that if I’d not cold capped. Id’d o it again - I spose thats my ‘verdict’ - hope this helps and good luck with whatever you decide
Hi
I didn’t use cold cap. To take another angle with all the cancer “celebs”. They clearly do not use the cold cap from Kylie to Bernie Nolan. If we assume they can afford the top oncologists, if it was definatly OK to use it, given the extra pressure on celebs to keep looking good I am sure they would. This was not the reason I didn’t use it, just a thought that came it me after I had started chemo.
My oncologist doesn’t encourage it, but it was my personal choice to say no as well. Firstly I didn’t think I could take the cold. Secondly I was unsure as to stopping the chemo reaching everywhere, I want to give myself the best chance I can to beat it. If that means no hair then so be it. In fact I soon got used to it and it is very (very very) slowly growing back. Last chemo was February, I am on herceptin and I think that slows hair growth.
It has to be a personal choice, but for me it was no definate no. You have to do whatever you feel comfortable with.
The cold cap treatment was not available at my hospital so I lost my hair before my second TAC chemo.
The hair does grow again its true but it takes so long!!!
I would give it a go if I were you. Given the option I would have gone with it.
Good luck whatever you choose.
Love
Sue xxxxxxxxxxx
Hi, I used the cold cap through 4XFEC and 4xTax and had some thinning but anyone that didn’t know wouldn’t guess. I was told by onc that even if cold cap worked through FEC I would definitely lose my hair on Tax - this only made me more determined to try it. Also on the first day there was a little old lady with the cold cap on and I thought if she can do it so can I. I was told to have some pain killers before and they definetly helped. It was painful for the first few minutes of the cold cap being on but I soon got used to it. I would go for it again as I didn’t want to have to tell everyone and have their sympathy and just want to try and be as ‘normal’ to the outside world as possible.
Hope this helps
Used the paxman cc and lost most of my hair through fec/tax Chemo but stuck with it, had last tax 6 weeks ago and have about 1.5 cm regrowth now. Response is very individual, good luck, I hope it works for you! Tina
My experience is having had 6 FEC
used cold cap through the first 5 and kept most of my hair… thought it was going but not compared to not doing it on the 6th so I could get chemo over and done with… and now I have baby hair… very short and basically all gone except fluff
if you want to keep your hair then use cold cap… if it doesnt bother you then dont.
As for side effects of cold cap
sickness and vomiting
headaches
Would I do it again… NO NEVER
but everyone is different
Fingers crossed for you xxx
I’m having the same dilemma at the moment. I haven’t got a date for my first treatment yet but I’m trying to weigh up the pros and cons. So far I’m veering more towards not using it
It was really important to me to try and keep my hair. I endured it through 4 sessions - not nice at all but doable. It didn’t work and i was pig sick. Would i do it again? - probably. it all depends on how much of a deal it is for you.
Hi had MM x 3 and FEC x 3 Used cold cap and whilst it was v. uncomfortable at beg of each new cap being put on, had to do relaxation breathing technique it worked for me. There was more hair coming out on the comb when used so patted hair down and only shampooed it every 3rd week.Was to have TAX after surgery but Ons decided enough response with 6 chemo so cannot comment on Tax. Understand that it is E for Epirubicin in FEC that is worst on hair follicules.
Love Jackie
Thank you all for your posts, all interesting comments and good to get new viewpoints. I have come across other people who say that not all professionals are keen on its use, so it’s not just me who has a nagging doubt about whether it reduces effectiveness of chemo… Even by a tiny bit… I want all the zapping I can get!
Buzzy let me know if you come any closer to a decision! Are you due to start chemo soon too? My first is on Wednesday next week.
Sorry I should have mentioned, I will be having 6x FEC
Hi Rusty,
My onc is the same one as Bboonie (above) l have just finished 3 FEC, had my first TAX on frid 13th, my hair was shaved, and is now like a man that hasn’t shaved for a couple of days! but l wear my wig all of the time, l am very happy with it,
I remember going to chemo with a friend 11 years ago, same onc. same views, so over the years he hasn’t changed his thoughts, which were then, that he is not convinced the chemo gets everywhere when the cold cap is used.
Purely his views, lots do use the cold cap, and as far as l know there has never been any evidence to prove the use either way as to if the chemo gets everywhere.
My view is l have put my trust in my onc. and will go with whatever he says.
Good Luck with whatever you decide
Sandra x
Hi
Iwould say YES go for the cold cap,i had 3 epis,3 taxs and then cmf.After the first epi i lost lots of hair and was going to give up on it but i carried on and the hair even started to grow during the tax.
It was the worst thing for me to think I was going to lose my
hair,and i would say i prob lost about half of it,but as we had a really cold winter I was able to cover it up with a baker boy hat when i went out,I did have a lovely wig but only wore it when going out socially,I never really liked it.
I have just finished rads and have a full head of hair it has been cut 3 tines and coloured twice,no one would ever know i have been ill.
The cold cap isnt the best experience in the world but doable and well worth it if you want to keep some hair.
Go for it
Jackie xxxxxxxx
I decided against the cold cap, because I wanted the chemo to reach to the very end of every hair folical. There’s no way I wanted to give a chance, or provide a little hiding place to anything…
Hi Rusty
I go to see my oncologist on Tuesday for a date when my chemo will start so I’ll discuss the cold cap with him then. I’m still undecided at the moment
Hi,
I used the cc for the first 4 FEC (4 FEC/4 TAX) but my hair did still fall out quite a bit and I couldn’t make it look decent enough to go out in public, so I stopped using it. Also, the smell of the conditioner that they smother your hair with prior to putting on the cap made me heave after the 2nd time, even the thought of it now makes me want to throw up! So, I shaved off my hair and used bandanas and the lovely wig that I was given.
I am now finished my chemo 3 weeks ago, my hair is like baby hair now, fluffy, and I think its stating to grow a little bit… feels spiky when I run my fingers up the back.
Everyones experience will be different, yes it is painful for the first 10 mins or so, but its fine after that. If I didnt experience hair loss whilst using the cc, then I would of carried on using it, but I guess it didnt completely work for me.
Hi
I have had two FEC with 2 more to go then 3 tax + herceptin. I have used the cold cap for my last two sessions. I desperately wanted to keep my long thick blonde hair due to getting wed in 5 weeks!!! I was confident that it had worked but day 15 - BAM! 40-45% of my hair just fell out. I Had a sore scalp two days prior to this horrendous event! It was heartbreaking and very stressful. So I went to my hairdresser and had a fab new short do, which I actually really like. My hair is still falling though - seem to spend most of my time rolling a fluff roller over my clothes and sweeping the sodding floor!!! Having short hair fall is alot easier. I wear lots of scarves and bandanas anyway so peeps seeing me with a scarf is no different. My hair is getting very very thin though, I have a feeling I might be making yet another trip to my hairdresser to get the clippers out However I have a wonderful wig on order and am looking forward to having a play with it.
The cold cap isn’t that bad but does make you feel a little odd after a few hours wear. Toward the end of my last chemo I just wanted to rip the bloody thing off - but some pain killers and a cuppa calmed things down. No-one can predict if your hair will fall or not, so I think its defo worth giving the cold cap a go. If you don’t try how will you know? If my hair stops falling and is manageable then I will use the cap at my next treatment. So give it a go - it might work well for you. Gotta try these things.
To all who are just about to commence your treatment good luck with it and your decisions about the cold cap. Chat soon campers xxxxx
I gave it a go on my first fec. Didn’t hurt me whatsoever just a bit odd and bulky. But I hated not being able to wash or brush my hair after and the constant will it/ won’t it fall out. Scalp got fore day 16 or so, then I could pull out handfuls which I became obsessed with doing, like a freaky party trick! It drove me mad so I held out til my sons 5th birthday party and happily got my friend to shave it the next day. Huge relief. But I have now had 3 fec and 3 tax and still have a covering of hair, some of the original shaved hair and some new growth from over thd las 9 weeks or so. So no answers fir you but am happy I shaved mine but prob happy I gave the cold cap a go too.
I decided not to have the cold cap, as the chemo nurse said if it were her she would not as you cannot be sure that the chemo reaches every follicle with the cold cap , and thats the main aim, that every cell gets a blast. I lost all hair on day 5 after 1st chemo, but it came back in very quickly after the last chemo, and now ,it looks better than before, its twice as thick and has come back in very wavy, so no trouble to style.
hope you are happy with what ever route you take,and the time will fly by.
Just had the 4th FEC out of 6 and had the cc for the first 2 treatments.
If anyone had said i’d be prepared to lose my hair over doing the cc i would of laughed. Keeping my hair was everything and I thought i would of done anything but coming upto the 3rd treatment I was more upset and anxious about the cc then anything else. Chemo is bad enough and the extra time was torture for me. The other thing was that my hair did fall out, thin enough for me to notice even though people said it looked ok.
I’m now patchy/baldy looking which is upsetting but i’m doing ok. I have my nhs wig,scarves and some hats and losing my hair now feels like part of this journey x
However I have a wonderful wig on order and am looking forward to having a play with it.