Cold cap users….

Hello JelloH

I used the cooling cap during my chemo for endometrial cancer in 2022. It worked well. It is hard to describe in percentages, my hair did thin all over, but I did not need a wig or to use scarves. I had no bald spots. My hair started to regrow during the second chemo cycle. What I noticed most was how thick it did actually grow back and also how healthy the regrowth was. I had shoulder length hair throughout- it just got finer. 

I did not use a silk cap as I got advice via a Paxman users group on social media and instead I used a silky pillowcase. Day to day care is important- using a wide toothed comb to prevent any matting- otherwise any shedding can get tangled in the hair that remains. A mild shampoo with no additives/no parabens etc and no rubbing in- just rinse in shower with warm water- twice a week. If you tie your hair up- use a soft scrunchy and don't do it tight- you need to avoid putting tension on your routes. No hair drier, straighteners, colouring etc. I bought some childs leave in spray conditioner that I found really helped. I also used volumising dry shampoo in between washes and to help with styling. Without this I feel the hair loss would have been more noticeable. 

I shed with each cycle and a bit at the end of chemo but during this time I also had regrowth. There were about 4-6 weeks after my last chemo when I felt my hair looked very dry and out of condition but the conditioning spray etc made a big difference. I also did a weekly conditioning treatment. I used a natural banana hair mask. 

Don't avoid combing or washing your hair as although this is the time you will notice the hair shedding- the hair has already shed and there is nothing you can do except comb it out so it doesn't matt. I found it more helpful to focus on what I retained rather than what I lost. I also used some of those hair fibres and also root colour cover sprays. These both disguised the thinner bits. 

There were several ladies on my chemo days who used scalp cooling and they all had some success. I do believe also that it does protect the hair follicles and encourages regrowth. Mine was certainly quicker coming back than I expected. If anything my hair looks thicker and in better conditioner now- than before the chemo. 

Good Luck. If there's anything else you want to ask, please do so.

Jane

Thank you so much for sharing your experiences with me Jane. It’s very much a mine field of new things to learn. When I had my mastectomy in September I did that thing of just buying EVERYTHING just in case… and in truth ended up with a whole heap of stuff I didn’t need. My wedge memory foam pillow and my drain waist belt were all I needed.

So I’m currently super aware of not panic buying everything all over again for this next stage in my journey. So all experiences are really helpful and hopefully I will be able to pass on in the future to help the next person.

It’s funny you should mention the avoidance of washing and brushing my hair - that exactly what I’ve been doing! I’ve literally just been scooping it up in a silk scrunchie and hoping for the best! I’m going to brush it in a minute now, it’s always the firsts isn’t it!

I was advised by my chemo nurse to use Simple shampoo and conditioner, but I prefer the leave in conditioner idea as it’s less faffing with the actual hair. I’ve always used Child’s Farm products for my daughter so I may get theirs.

Thank you for the silk hat/pillow case help. I will go for the pillow case instead.

 Thank you for your help and support, much appreciated. I hope you are travelling well on your journey. Take care x

Child's farm is the one I used. I still do now sometimes as I like how it makes my hair feel and the scent. In the hospital they used tresemme conditioner to stop the cap sticking but I found the heavier type conditioners weighed my hair down more and didn't want anything heavy in case it increased the shedding. I used different shampoos- Simple, Faith in Nature, any thing that was very natural and basic with no additives. I did try one from Amazon- in a pink bottle/volumising with no parabens which was good. Dry shampoo in between washes- particularly volumising ones really helped- not necessarily just with the cleaning but also with styling. Good Luck- I found it's worth sticking with

Thank you  

Hi JelloH ,I am coldcapping and have just had my 4th EC chemo before going on to Docitaxel 4 Jan .Just thought I'd share my experience and hope it helps .The first 3 weeks after 1st EC ,no hair came out so I thought wow this is brilliant .However then it all came as a shock when suddenly hair just started coming away .It was horrible ,hair all over the place and I think that weekend and following week were the worst I had felt about my appearance. On the Monday (24 days after 1st EC) I had a complete meltdown as I stood over a basin full of hair convinced cold cap wasn't working.My hair was a neck length bob ,but the strands just seemed so long that in the afternoon I took scissors to it and just chopped it all . However ,eventually the shedding did slow down and I have carried on cold capping .The top is really thin and patchy ,but I have a reasonable amount of fringe and sides so when I put on hats I still have some fringe to show and some all round at the back .As it's so thin on top ,they put one of those caps they use when you have ops to protect the bare skin .I would guess I have lost maybe 60/65% hair but it means a lot to me that I still have some hair there. I bought some lightweight turbans from amazon that have pearls on them to put on quick if someone calls round ,only 8.99 for 2 .I use Simple conditioner when coldcapping and wash it out next morning. Go ahead and carry on with coldcapping, but just be warned there will likely still be a lot of shedding and if you leave hair long ,it's a lot of long strands to keep mopping up.Nothing quite prepared you for the shock of hair just coming away in your hands .Good luck and if I can help just let me know x

Hi, thank you for sharing your experiences with m, it’s very much appreciated. It’s also nice being able to share with people who understand and are a bit ahead of me.

I had my first round of EC on Friday and have a further 3 and then I go onto 4 rounds of paclitaxel.

 I’m really aware in my mind that the cold cap isn’t a given and I was given all the percentages so I know I’m going to be in for a tough time. I guess I just wanted to get Christmas out of the way looking ‘normal’ - I don’t know who decided what that is! I have prepared for a 50/50 chance of it working at all, if I’m in the lucky 50% I’m prepared for losing 60/70% anyway. If I come away with anything more, it’s a bonus, if not I’m prepared!

I have also got a few of those hats from Amazon in preparation - I guess I’m lucky that this is all happening through the winter season when we wear hats anyway and also I tend to hibernate at the best of times!

i have got the simple shampoo and conditioner as advised by my chemo nurse. I’ve also ordered a wide toothed woooden comb for brushing. Someone else who’s cold capped suggested instead of conditioning in the shower using leave in conditioner to advoid less ‘faffing’ about with the hair.

Wishing you luck going forward, it would be lovely to keep in touch and share.

Breathe, one step at a time, we’ve got this… xx

I was told earlier today that I need chemo (still crying 5hours later) and am terrified- mostly of losing my hair, I will try the recommendations you have mentioned x

I’m sorry to hear of your diagnosis, they are the most horrible words to have to hear. I think when you’re told that you have cancer you go into overdrive of ‘getting it sorted’ but the words chemo carry another fear for me that couldn’t be described.

i had my first chemo last Friday and although I can only speak from personal experiences (each of us have vey different pathways/journeys), I can honestly say it has been bearable. I built up in my own head such a horrific picture of each step of my first round that actually nothing was nearly as bad. As I say, I’m aware that I’m fortunate and I was able to tolerate up to this point both the cold cap and the first round of treatment. I won’t lie, I’ve had a few issues (mainly I got a blood clot in my arm from my PICC line, but I simply called my chemo team, was at the hospital for 4 hours yesterday and all sorted!).

if you are offered the cold cap, give it a go, but don’t beat yourself up about it if you don’t like it (a lot of people don’t). It makes treatment day a little longer, but nothing drastic. I was given an anti sickness tablet which I needed an hour before treatment so there was plenty of time for my cold cap (it’s basically like a swimming hat with a tube down the back). You wear it through the treatment but it’s not uncomfortable. I then needed to keep it on for another 90 minutes afterwards. But that gave me a chance to just ‘settle’ a bit.

Personally, I don’t like hospitals at all, but I can hand on heart say, I actually feel safe there at the moment. So much care is taken of you every step of the way. The biggest fear I think is the unknown, not knowing what’s coming, thinking about random things in the middle of the night!

But please do reach out no matter how little  you think the question maybe, there will always be someone else who either has that question or has the exact answer for you to put your mind at rest. Seeking answers to a question that puts your mind at rest or ease is another positive step a long the way.

Take care lovely, breathe, one step in front of the other. We’ve got this x

Hi JelloH

I have just finished 12 weekly infusions of  Paclitaxel alongside Carboplatin, & have so far had 1 of 4 infusion of EC. I cold capped for all & lost no hair at all on the Paclitaxel & have lost none so far on the EC but under no illusions that this will continue! Prior to starting chemo I had my hair cut into a short bob & I only use a tangle teaser or wide tooth comb to brush it. I wash it twice a week in cold water when I just smooth the shampoo onto my hair, no vigorous rubbing & use a leave in conditioner. I use silk pillowcases & scrunchies but only tie my hair up at night otherwise I leave it down & never cover it especially if outside in the fresh air. I appreciate that I have been very lucky!

Good luck & hope this helps

Verity

Hi, my treatment is similar to yours. I’m currently on round 2 of 4 EC every 2 weeks, I then move onto 4 paclitaxel every 2 weeks.

I’ve not had scary hair loss yet, just a few patches so far and like you I’ve been very ‘gentle’ with my hair. I was going to cut my hair short but my chemo nurse told me to leave it as they can use the hair to cover any bald spots to protect the scalp.

Again like you, I’ve prepared myself for the fact that I will lose a fair wack of my hair but I figure it’s a small price to pay for killing cancer cells. Hopefully in time my hair will grow back. I’m glad I went with the cold cap, at least I know I’ve given it the best possible chance.

Take care, one step at a time, we’ve got this x