Cold cap

[hollyblueivy]

Hi sorry new to this section of MN and have a few questions for a relative.

Has anyone tried the cold cap and if so can you share your experience and level of success?

Any tips that may help?

Thank you

There's been some chat about experiences with the cold cap on the breast cancer support thread recently.

If you start from this post, there are more afterwards on the same page:

https://www.mumsnet.com/talk/cancer/5311885-likely-breast-cancer-after-ultrasound-thread-2?reply=144285375&utm_campaign=reply&utm_medium=share

Thank you I’ll take a look.

My MIL has recently battled ovarian cancer. She’s a midwife and her Gyne consultant and good friend said “I’m pleased you took the sensible approach to lose your hair. The pain and likelihood of losing your hair which can grow back, is a pointless and unnecessary added stress in an already stressful situation”

@SdpbodyI do get what you’re saying and I understand it can around almost two hours to the treatment. But I also understand that for my relative their hair is absolutely beautiful and a strong sense of their identity. With so much going on with this whole thing, if they want to govern the cap ago, I will support their choice.

Gosh, was your MIL OK after being patronised so badly?

OP, my lovely SIL used one. It was really important to her to stay feeling as ‘normal’ as possible, and also stay looking ‘normal’ for her little kids.

I know it wasn’t comfortable, but in the scheme of cancer treatment it wasn’t awful. She was glad she did it, but everyone will have different priorities.

@LegoAirlines Thank you and I’m glad it worked for her.

I used one for EC and pax and carbo chemo.

I didn't lose any hair.

( Even if you lose hair it protects your follicles and the hair grows back faster)

It means you have to be on the ward longer and the nurses were grumpy about putting the cap on. My daughter made sure it was on properly at each chemo.

My SIL did it and lost very little hair.
One of the major suppliers is local to me and I know the owner and a few people who work there and they are very very dedicated to helping people

Thanks @tothelefttotheleftIs there a knack to making sure it’s on properly? My relative has quite thick hair, could that be an issue? Would they benefit on any way from having it cut shorter ?

my Aunty has very thick hair and had breast cancer the cold cap wasn't successful because her hair was so thick

I’m on the thread mentioned. I had a successful cold cap experience but I had the fairly mild Paclitaxel chemo. It’s unpleasant and uncomfortable but I’d say I saved 70-80% of my hair. Kept my eyebrows but lost all body hair and my eyelashes. I was glad I tried and I’d always recommend it as “worth a shot”. A lot depends on the type and duration of chemo though.

I also have very thick hair but it was successful. It depends more on the type of chemo.

I think that’s a very negative post. I didn’t find it painful, a bit uncomfortable until the freezing process finished and also a bit inconvenient as it added an hour to my treatments. However, the psychological advantage of going through chemo with my hair intact was huge to both my mental health and my confidence. It also made it easier for my young autistic child to cope. I prepared well for it and I have no regrets.

They have trained nurses to put it on. I’d go in with washed hair with no products. They smother it in conditioner and spend some time making sure it’s on and secure (there are also sizes so it’s tight to the scalp). I would not wash my hair for a couple of days after so looked crap but it was lockdown and not a big deal. It was worth it to keep my hair. It wouldn’t hurt to have it cut a little but ultimately it’s the follicles that need freezing and on that basis it doesn’t matter how long your hair is. It added an hour to treatment but it was worth it for me.

For those talking about the type of chemo. I think it’s alternate with the Pal(?) and Carbo one time and D(?) on about. Sorry I only know the start of the words so this may not be any help.

She needs to speak to the nurses trained in haircare. EC is tougher on hair. I didn’t have that, I had Paclitaxel which is a very tolerable chemo. It’s nothing to do with how thick your hair is but the type of chemo you have. Some people
can’t tolerate the cap at all and it is unpleasant as the freezing process happens but for me it was tolerable. I took two paracetamol before and despite it being a hot summer, had a blanket, cardigan and thick socks because it cools the very core of you and it’s better to keep warm.

There is absolutely no harm in trying it in my view. If it’s not for her then that’s fine. However, it may work well and that would be lovely for her!

@hollyblueivy

I was advised to have my hair cut to shoulder length.

I don't have thick hair but lots of hair.

Yes it has to be fitted properly. There are videos on the Paxman site to show how to get a good fit.

theres a potential that even if you use the cold cap you can still lose your hair but apparently it helps it grow back thicker but I hear they are unpleasant. Your relative can always try it and if she really doesn’t like it or finds it that uncomfortable then she could choose to stop using it.

I used the CC, once for chemo 1 ( Fec and taxotere) In 2010. It didn’t work. I had long thick lustrous hair, I was devastated.

I used it again for thinner shoulder length hair, for chemo 2 ( doxorubicin ) 3 months ago. It didn’t work again.

I totally get the wish to continue to look and feel “ normal” ( we all want that) but sometimes it works, sometimes it doesn’t. My hair, lashes, brows and body hair have all gone again.

OP, if your relative does lose her hair, the Ellen Wille wigs and little bamboo hats are lovely, really light and pretty.
I don’t where your relative is based geographically, but there’s a shop in Didsbury, Manchester, which sells loads of lovely headwear which you can try on. You can even buy “ hair halos” Essentially little headbands with real hair attached and you jus pop a hat over the top! The hair frames the face.

Wishing your relative all good wishes going forward.

I used it for breast cancer chemo. I had EC then Paclitaxel. It was on longer afterwards with the EC (1 hour?), 30 mins with Paclitaxel. I think it was 30 mins before starting the chemo so yes it adds time to being in the chair. It's a smallish chemo unit where I was treated and was always a very calm environment so wasn't too bad being there longer.
The first 10/15 minutes were the worst. I was advised to take a couple of paracetamol (I had to bring those myself) and I found distraction was key so played games on my phone.
I lost between two thirds to three quarters of my hair but it did start growing back on Paclitaxel.
My hairdresser said she finds people who cold capped seem to get hair back quicker. She did say that's only her observation, no scientific evidence.
I was going to give up due drastic hair loss after my second and third ECs but the nurses said it was worth persevering and the loss after my fourth EC was negligible.

Take a look at https://coldcap.com

It is entirely a personal choice whether to go ahead with it. It does increase your chair time as it can be on up to 90 minutes afterwards depending what drugs you’re having.

It is cold. But in my experience if patients can tolerate the first 5/10 mins then it’s ok. You can take paracetamol if needed. Also a blanket and hot drinks.

It doesn’t work for everyone. In my experience there is still often some loss but not enough that it looks obvious. The caps come in 3 sizes (if using the paxman system) and you need a good fit on the crown. Unfortunately this means that it doesn’t always reach the side bits so there will be loss there.

The website gives advice on hair care afterwards to optimise success and what you need to take in with you (towel, conditioner).

If the hair is thick the cap may need additional time beforehand (45 minutes afterwards depending instead of 30).

good luck.

I’ve had six rounds of chemo with a cold Cap, I have another 2 to go. It really frustrates me that people get told such horror stories about them, honestly, it’s not that much of a big deal to me when I’m wearing it. I think the sensation is very much like going outside at night with wet hair. Obviously it’s not a particularly pleasant sensation but as soon as the scalp is properly cold it goes numb anyway, it’s not something that you need to feel really scared of.
I got a thin piece of memory foam and taped it (with a few little bits of plasters) over my forehead, because once I had the cap actually pressing onto my forehead and that was painful. I don’t personally think a bandanna is enough to protect the forehead.
I wear a size too big for my scalp, and then after the cover goes on, I use a stretchy bandage to bind it neatly /tight to my head. As you can imagine, I look fucking gorgeous while this is happening 😂
but the point is, we all have different sized and shaped heads, and personally I find it more rational to start with a larger cap and bind it onto my head than have one that is a little bit too tight where is obviously going to ride up and miss bits and also be extremely uncomfortable. The nurses always tell me it won’t work, but I did keep pretty much all of my hair for the first 4 treatments (pacli/carbo), now I have started EC and my hair has started to thin on top, but I can hide it, it’s not severe yet.
I don’t think you need to cut your hair. I have fine, but thick hair, one thing is that it is difficult to get it wet all the way through to the scalp as air pockets can easily form so I always stick my head under a tap, and then put a shitload of conditioner all over my scalp, I do it myself because then I can feel with my fingers that I have absolutely covered my scalp, it’s all wet and slimey with the conditioner. Then just zone out during treatment. If you need reading glasses that can be tricky, I’ve got a pair of cheap ones that I ripped the arms off and I just balance on my nose. Obviously I’m not that concerned about what I look like during treatment haha

@KurtShirty

You've got it down to a fine art!

How is the hair loss or not going?

so far I’m getting away with it!
It’s long- I’ve Lost about half maybe, but I realised actually wearing it up in bed meant the front and top were getting stressed/pulled out so I wear loose plaits now and in the day either a baseball cap or I take time to part it in a different place and that covers the thin patches .
im a costume designer and work with headdresses a lot so couldn’t resist tweaking rather than just giving up, I think it’s totally possible to make it comfortable:)

I didn't as it's not commonly used in my country. I didn't lose all my hair but lost most of it. Just get a decent wig I loved my wig. So much easier every day :)