Cold cap

Hi!

I had chemotherapy, then a lumpectomy in March 2021, and radiotherapy in May 2021.

I had 3 sessions of EC, then 4 sessions of docetaxel, pertuzamab and trastuzumab in 3 weekly cycles.  This reduced my almost 6cm lump in breast and lymph node under arm to no trace .... amazing!

I would definitely recommend doing the cold cap.  You need to do it from the first session of chemo.  It is not nice, but is bearable.  After the first 10 minutes it is not that bad. It is worth giving it a try.  If you can’t stand it then you can stop.

I had shoulder length hair and didn’t cut it.  While I did lose hair from around 2 weeks after the first session and then throughout the whole time I ended up with around 60 percent left.

Each session I thought, well that wasn’t worth it because I have lost hair anyway, but then my husband would say you have still got some so keep going.   So I kept going.

I got a couple of baldish areas, where the cap didn’t quite cover eg just above the ears and at the bottom of hair at the neck but the hair length from above covered it.

It was a lot thinner all over but at the end of chemo I had enough hair left that I didn’t ever go bald.  I did end up having to cut it short to balance out the hair that was growing in.

I bought a wig for just in case, but I never wore it.

My hair actually started to grow back in during my last few cycles of docetaxel.  It has grown in quite thick, and curly!  It is about 4 inches long now and I am trying to grow it to shoulder length again.

Good luck with your treatment.  Stay strong x

Thank you so much BaileyLady. Hair is just hair...but its so important to us isnt it? 

How were your brows/lashes/nails?

Hi,

Thank you for your experience, i am thinking about this but not sure, is it painful?

I have yet to talk to the chemo team about it but I have been told it is very uncomfortable for the first 10mins or so but becomes bearable but never pleasant. Some people are unable to tolerate it be ause it is extremely cold. I will have to give it a try though.

Hi, I would definitely recommend it. I had thick curly/wavy unruly hair to start with which did help but I don't honestly think anyone would look at me know and know if had six rounds of chemo. It's thinner and I'm also struggling with colour and styling but for me it's definitely been worth it. 

I would say I started shedding 2/3 weeks after first ec but hardly noticeable. Docetaxel seemed to make me lose more. Also I only wash my hair every 8/9 days. More came out in the shower and when it was drying was very knotty. I used paxman products and look on their website for further advice. But I don't necessarily think these made a huge difference.

The cold cap itself was fine, first few minutes are worst but honestly I have much worse procedures. I never dreaded the cold cap which shows I didn't notice it. I think as hair gets thinner and scalp more sensitive people may find it harder but if they had said leave it on another hour I could of done. 

My cancer care unit is small only four chairs with cold cap available and initially I wasn't gonna try because of being told of the time it added to treatment, I found my treatment was often delayed or running late anyway so the cold cap made no real difference. I'm so glad I did it and wasn't really encouraged by any of the bc nurses or oncologist, I think they found it a bit of an inconvenience sometimes as they were so busy and sometimes my particular nurse wasn't trained but I think at the very least you should consider trying. Nothing ventured nothing gained!! It's not for everyone but I would do exactly the same again. Xxx

• Thank you Lfc74. Encouraging comments. I have decided to at least give it a go. My discomfort tolerance is usually pretty good....as long as I'm not feeling rough already from the meds. I don't know which ones I will be having yet either. 

I found appointment with oncologist as giving me more questions than answers. He was nice but a bit ......strange!! He told me the EC was bad but the docetaxel was worse which really stuck with me, for me this wasn't the case. EC  wasn't great but manageable with only a couple of bad bad days. Docetaxel was a breeze in comparison except for repeated thrush infections. He also said he had tried cold cap and managed about 8 minutes, I again thought if this young, strange man can't cope what chance have I got but totally not the case. I do think I have a strong pain threshold but I wouldn't describe it as pain or even uncomfortable really. Wrap up with plenty layers or even a hot water bottle xxx

Thanks Lfc74. You have given me a much more positive outlook. I'm usually not bad at handling discomfort. I didn't even need to take any painkillers after 2 breast surgeries....or a gynaecology op a couple of years ago so I'm hoping I can manage this too. Xxx

Hi LovinLIfe I had my first cycle of Docetaxel and Carboplatin and Phesgo on 26th Jan & used the Paxman cold cap. Worth looking at their website and Claire Paxman video on Instagram on how to put it on correctly. I had long hair but had it cut to a chin length bob beforehand. I found it absolutely fine I took 2 paracetamol with me and took them 15 mins before and although initially cold was very bearable and I just got used to it. I am day 14 post today and so far no shedding. I used simple conditioner pre cap it just helps when they remove it at the end. One too if you do it is to double check they have the right pre & post treatment time to keep cap on as I am not sure they got my post time correct!! Good luck x

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