Cold cap advice

hi good luck with the cold cap, I didn't try it because the nurses were a bit dismissive, it has mixed results. It is pretty uncomfortable and requires a very good fit to be effective. They're in short supply which means juggling patients for when they're available. It also extends the time you have to stay in the unit. My chemo was taking a good couple of hours and with the cold cap you have to be there an hour in advance. 

I figured I'd wear a wig and eventually my hair would grow back, which it has.

You are correct in that our hair is actually the biggest indicator of something being 'wrong' and therefore likely to be the biggest worry for the kids, and everyone else for that matter. 

We used to be able to search for terms like 'cold cap' in the discussions and I'd have been able to maybe point you in the direction or tag someone who'd used it effectively, that search feature seems to have vanished?

When my hair started to fall out I was in the shower pulling conditioner through it and it was just coming out in handfuls, very upsetting indeed. But then got my husband to shave it off with a trimmer, which I found out later was traumatic for him, but hindsight is great isn't it.  But definitely go for gentle products, once my hair started to grow again I was sensitive to all the usual brands. 

From memory I'm going with gentle shampoos and conditioners, I think it's conditioner you have to use to create this 'seal' for the cap to work. So comb quite a bit of conditioner through your hair to coat every strand.

Which means wearing a beanie or turban to and from the unit, to avoid a cold headache but you will be advised to take paracetamol in advance for that. 

Then no tugging or pulling what will be fairly fragile hair. 

I had a very good wig in the end which got me through treatment.  Most people didn't really notice, although it took some practice to get it right. Then a selection of soft beanies for when I didn't want an itchy elastic band round my head. 

When the hair started to grow back, in that original slate grey skinhead style,  the wig was slipping so in the end I stopped wearing it.

At that point people who I knew quite well looked right through me, that was deeply disturbing. Even the nurses in the chemo unit didn't recognise me until I spoke. Thankfully I was more robust emotionally by that point but it was very strange indeed. 

I'm going to try and contact to see if they can search for cold cap tips, or point us in the direction of the search function

use the @ to tag people 

big hugs

Carolyn

xx

I'm clearly blind, there's a magnifying glass icon in the top green banner which does work as a search function within the groups

Hi

so your first post - we'd better make sure we sort it for you. As Carolyn28 said - you can search at the top of the page and it will bring up previous discussions. You could also post this in the breast cancer chemo thread, but I'm going to tag Kelstar9 who has been using the cold cap successfully and offered to give advice 

Always good to get the most up to date experience.

I realise that your treatment must be today, so good luck with it - hope it's kind to you

R

I tried the cold cap for my first two chemo sessions, I suffered horrendous headaches and gave up on it! As expected, I lost all my hair. On the positive side, it is now growing back lovely and thick and doesn't seem to be as Grey as it previously was! 

I used a simple conditioner...lots of !! The nurses on the day unit will offer advice, I found them to be very helpful.

Good Luck x

Hello, sorry to hear about your diagnosis. I have breast cancer too, and have just completed 4 rounds of EC. I too have thick hair and was desperate to keep something as I have a young daughter who was really upset at the thought of me being bald. Though I have lost some hair I have enough to get away without wearing a wig. If you can manage the cold for the first 5-10 minutes then you'll be fine. After that you go numb, I have had to check it's still on as I can't feel it after a while.

Take 2 paracetamol before hand to take the edge off, it is definitely worth trying. Good luck x

Hi Mumof2

I’m cold capping! However, I’ve recently changed to paclitaxol and it starting to shed more, and definitely thinning, as I can see my crown now - it’s not really bad, unless you look for it but this has happened over last few days, but still have plenty of hair, and with the right styling, I can hide it well!. I plan to get a interlace system afterward.

I not really changed much, apart from being gentle with my hair, no pulling when I brush it, or no tight pony tails etc. And use a gentle shampoo, I use my daughters child farm brand.

My hair was plentiful, but thin to start, just passed my shoulders and I didn’t cut it or anything.

I don’t have any special tips, apart from be gentle with your hair and fingers crossed it will work.

definitely go for it, and good luck xx

Hi 

Hope your treatment has gone well today & that you coped ok with the cold cap. I am cold capping & have had 2 cycles of EC so far. I have lost a fair amount of hair & am certainly not such a good example as Kelstar9 but I have retained a reasonable amount so far. I am wearing a wide stretchy hairband all the time to cover the thin patches on the crown &, together with a woolly hat when outside, this means I can feel relatively normal. I intend to continue with the cold cap as all information suggests it helps with re-growth. My nurses agree with this decision as they have seen better regrowth many times. I have heard that some nurses do discourage continued use, so I feel lucky. I try to do what all the Paxman literature advises - concentrate on the hair you have retained, not what you have lost. I was keen to do whatever I could to avoid being marked out as a ‘patient’ - the loss of hair is the most obvious sign. 
Hoping that your treatment goes well and that you have good success with the cold cap. x

Hi Kelstar9

I was very interested to read that you are going to have an Intralace system. I have just arranged to have this done after my next treatment & I didn’t know of anyone else who has done this. As I have already lost quite a bit of hair I decided to go for it now rather than wait until after  the end of treatment. A big investment but we are all different & for me it is worth it x

Hi PatsyP2

Thanku for your kind comments about my hair. It was so much better a week ago, and been feeling quite down today about it. But I’ve had a bit of a rough week.....my chemo didn’t go well this week but that’s another story!

For personal reasons, I need a full head of hair this year, so looked into what hair replacement systems were available and came across the intralace system. Luckily, I have someone who looking for models, in my local area, so is offering the system at 1/2 the price. So I’ve contacted her, and on her list. My plan is to finish my chemo and go see her, as I should be finished by the time this lockdown lifts (I am hoping)

take care xxxx