Cooling cap or not

I had my 1st chemo on wed and had used the cooling cap which is really uncomfortable. I would like to know who choses not to have the cooling cap and why.

I am not worried about losing my hair. In fact should I get it shaved before losing it altogether? Any advise?

Hiya
I had cold cap for my four epirubicin cycles. I too found it uncomfortable. It is inevitable that some hair will be lost and I have gone very thin on top. As the hair got thinner, the cap felt colder. It was still distressing to see hair on my pillow and come out in the shower. There was a few times where I nearly stopped cold cap but my vanity ruled! I admire these ladies who decide to shave their heads and are taking control of the situation. I am now on CMF and the hospital does not offer cold cap for this regimen as it only cause thinning and not total loss. I was quite relieved that I did not have a choice as treatment is so much quicker now and less distressing. On reflection, I wish I hadn’t bothered with cold cap. Once my ‘balding top’ starts growing back, I am now a bit worried that it will look very different to the hair that I have left. I will keep you posted.
If you’re not worried about losing your hair, then take control - at least if you get rid in one go, you won’t be forever sweeping it up!!

All the best

Carly x

I also chose to use the cold cap. I was really panicky about my hair - can’t really explain why as it was not that special!!! But anyway I have had 3 x FEC and 1 x Taxotere and I only have a very very small bald patch on the crown of my head - my hair has thinned alot, and on a bad day is what can only be described as ‘fluffy’ but no-one else can really notice any difference.
I really admire the ladies who through choice or no choice have gone through this extra trauma - they have all been through the mill but have coped so very well.
I do hate the cap, but I do think it has been worth persevering with it - i would only shave it off sarig if it starts to come out in big handfuls - mine started to shed about a week after FEC#1 but then it slowed down and now I lose a little every 3 weeks.

Good luck - I’m sure some ladies out there will answer why they didn’t use it (if they had a choice), I know for some people it is simply the extra time taken on the chemo unit.

Hugs
Ali
x

Hi Sarig

Sorry I can’t help you really, as I had no choice with the cold cap, it was not an option for me. I shaved my head 2 days after 2nd chemo, as was coming out in clumps and my 10 month old boy was picking it up as crawled along, so decided to take the hurdle and get rid. Very hard and very emotional, but am ok now. I know lots of ladies do use the cold cap, as some don’t as Ali says I think it adds about 1-2 hours more on top of chemo.

You have to do what is best for you and what you feel most comfy with really. I had already decided not to use it anyway though, before being told not an option, as I have (had) fine blonde hair, and apparently cold cap works better with thick dark hair.

Hope you decide soon. Let us know how you are.
Love
Dawn
x

Hiya,

I chose not to give the cold cap a try, for a few reasons really. Personally, nice though it is, I like to be in and out of the chemo day centre I go to as quickly as possible and couldn’t bear the thought of having to sit there for ages before and after treatment. Also, I’m a bit of a whimp really and don’t like the cold too much!!! As there were no guarantees it would work anyway I personally preferred not to put myself through it. Finally, and what swung it for me really, is I was told that it stops the chemo getting to your brain, and I wanted the chemo to go absolutely everywhere!!

I started E-CMF chemo in may. I got my boyfriend to shave my head for me the day we got home from my first session. The rest of my hair then came out 2 days after my 2nd Epi. I have never regretted not trying the cold cap, and besides, my hair is growing back now so I haven’t actually been bald for that long. I was gutted at first but soon got used to it and have some lovely head scarves.

Take care,

Kelly
-x-

Hi Sarig

I too like princess (Kelly) opted not to have the cold cap, as I had read that you can get brain and scalp mets by having it, I dont know how true this is but it was enough to put me off as Kelly says in her post, they dont have it at where I had chemo as they say it rarely stops the hair coming out completely and seems to be too much of a palava…

good luck with whatever you decide it is an individual choice

Pamela
XXXXX

Hey

I decided not to have the cold cap - was upset at the thought of losing my hair but decided to bite the bullet and go for it! Like Kelly I was also concerned that it prevented the chemo reaching everywhere! Irrational I guess but I didn’t want to take any chances. Also the fact that it would take at least an extra hour for chemo appts helped me decide!! (not the most patient of patients!!!).

Shaved mine off and went bald and proud!

Mine grew back curly and grey (only L’oreal and me knew that I was grey before chemo!!) Is now dyed and as straight as it was before!!

Go with your gut feeling! I’m sure you will make the right decision for you!!!

PJ

Hi there

I used the cold cap on my first FEC session, but my hair fell out around 16 days afterwards. It was awful but also something of a relief to know it was something I no longer needed to fret about and also it cut down the time on treatment each time.

I’m loving my wig actually, much easier to take care of than my real, thick, wavy hair! And as my hair was so thick it doesn’t make my head any hotter, but it’s amazing to be able to take it off when I’m having a hot flush!

Good luck

Cecelia. x

hey,

I am using the Cold cap, Hair started coming out 2 weeks after 1st Epi, it has been coming out since but i have really thick hair so still looks ok. When i went back for my 2nd Epi i was not going to bother with it again but, the consultant said the cap was working as i would have lost it buy then. I had my second dose with the cap a week ago. It is still thinning and i loose loads in the shower ( I only wash it 2 x week to save as much as possible). I have lost a patch on my crown but i twist my fringe up and cover it quiet well. Going to keep up with the cold cap for the next 2x Epi then i go on to CMF which is usual ok. If it starts to look patchy i have a friend on stand by with the clippers and a great NHS wig!!

Good luck and hope it works for you.

al xx

Just goes to show that everyone is different and everyone has a different reaction to the chemo, depending on their individual makeup and their specific chemo regime. I’m on 4 Epirubicin, then 4 Xeloda (tablets)… I had the cold cap for the first two chemo sessions (the one that you have on for 20mins before treatment, during the chemo and 2 hours afterwards)… it does add a lot to the time you’re there, but I thought it was worth a try… I found it was easy enough to bear the cold. But… the hair started to come out loads, so I bit the bullet and had it all shaved off!! I felt that losing the hair was really getting me down and was surpised how I got used to wearing a wig and dealing with baldness quite quickly. I’m on my second cycle of Xeloda now and the hair is starting to come through… very slowly!! And very grey!! Too young for that at 44 years, but really don’t want to go back to colouring my hair and exposing my scalp to goodness knows what chemicals… each to their own!

Good luck with it all…

AliS

Guess I was sooo lucky - I had the cold cap through 6 x FEC chemos…my hair thinned a lot on top but not so anyone noticed but me. My chemo nurses were brilliant - wrapped me in a duvet, brought me hot drinks, but really I just slept through most of the treatment. I kept my hair and never needed to use my wig. Guess I fell on the right side of the stats for once. The chemo nurse told me it only works for certain chemos (and I didn’t know enough then to ask which) and then only 10%. I think I am blessed by an angel on shoulder, after 37 yrs of Crohn’s, only to be told when dx I would not live for 5 years. Morale - don’t believe stats.

Liz.

Hi Sarig
I had my second Epi last Tuesday and, like Alex, mine has started to come out since then. I had it cut shorter into my neck before starting the chemo to give my hair a bit more of a chance of staying in, and it also helps to only wash it twice a week if you can hold out that long, as its not under any stress from rubbing, combing etc. I dont know if it will start to thin too much but will have to wait and see. I have another 2 epi treatments to go and then a course of CMF and I am not sure if the cmf will make my hair come out or not, or if its just the Epi. I think if you can get over the fact that you will more than certainly lose your hair not using the coldcap then go for it girl. I am too worried about being bald, so will just have to hang on in there. I have to sit at the hospital with the cap on for 30 mins before chemo, during the chemo and then for 2 hrs afterwards. It makes for a long visit, and does give me a bit of a headache when I go home, but I am half way through now so may as well carry on.

Best of luck

Annabelle xx