Cold cap

Hi Rose5

I’ve copied the info below from one of my previous posts so hope it helps.  I think the success of cold capping varies with the chemo drugs you have.  I had 12 weekly sessions of Paclitaxel and kept my hair which was such a bonus.  Please feel free to ask any questions and good luck with your treatment.

Loffie xx

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I found the cold cap much easier than I’d read about. The only downside is that you’re in the hospital for longer. I seem to remember I had my premeds (steroid, antihistamine, anti acid) then had the cold cap fitted for 30 minutes before the chemo started, and for 45 minutes afterwards.  I found it cold for the first 10 minutes or so before I got used to it, and it was only towards the end that I was dying to get it off!  Just make sure that you get the correct size cooling cap and cover that goes over it. Take the time to get this right as you need to make sure the cooling cap is in contact with your scalp.  I mostly had the same experienced person doing it every time, but had to get things adjusted sometimes if anyone else did it. Be proactive!!

I suggest you wear warm clothes - I took a big fleece to wear, and also asked for a blanket for my legs most weeks. I also purchased the Paxman shampoo and conditioner which is formulated specially as it’s mild and free of preservatives.

I’ve just found the Paxman Scalp Cooling leaflet and here’s a few other things they say:

- It’s important that the cap is touching the crown of your head

- you should feel the scalp cooling evenly throughout the scalp. If you don’t, let the healthcare professional know straightaway

- if you have thick braids or hair extensions, please remove them before using the cooling system (I’ve had short hair for years so this was fine for me)

- avoid harsh hair treatments like colouring, extensions, braiding, curling, straightening (I still haven’t coloured mine - am embracing the grey!)

- brush hair gently and shampoo less often with lukewarm water and a sulphate-free shampoo; style with fingertips (I washed my hair just once a week rather than every other day)

- moderate hair loss (30-50%) is expected (I did increasing lose some hair, mostly from the crown, but nobody would have noticed. You’ll probably lose your eyebrows, eyelashes and all other body hair but it does grow back!)

Just be gentle with your hair at all times and fingers crossed you’ll be fine.

Hi Rose5

i started chemo on 9th Dec and so far have had two sessions with the cold cap. It wasn’t as uncomfortable as I imagined and I got used to it after the first 10mins or so. I have started shedding quite a lot of hair over the last week (started on day 17 post first treatment) it’s mainly thinning out all over but more noticeable at the sides of my hairline. I have no bald patches yet..just thinning. I can’t say whether that’s considered successful or not...I suppose only time will tell but I intend to carry on with the cold cap as I have read that even if you do have full hair loss..your hair will grow back quicker, nothing ventured, nothing gained! Good luck xxx

Hi 

Like  I started my chemo on 9 Dec & had my second treatment 3 days ago. My hair is much thinner but so far no bald spots. The nurses were actually pleased with my hair at my 2nd treatment. 
The level of success with the cold cap really does depend on which drugs you are having. I am currently on 3 cycles of EC & this is really harsh on the hair and in reality at least 50% hair loss is expected - although there are some lucky ladies who experience much less. I think it is much better to go into this prepared for fairly substantial loss - but, as Paxmsn stress, focus on the hair you have left, not what has gone.I will be sticking with the cold cap as all the evidence shows that it does protect the hair follicles and hair regrowth is much quicker. After my next treatment I change to 3 cycles of Paclitaxel which is not as harsh and am hoping that like many others I will start to see some growth. 
The cap is very uncomfortable for the first 15 minutes and both times I have definitely been counting down the last 30 minutes post treatment, desperate to just get it off! 
It is a very personal decision but I would say that if you are considering it, do give it a go. You can stop at any time if you decide it isn’t for you - even within the first 15 minutes if you find it too uncomfortable. 
Good luck

Hi patsey! It sounds like we are on the same treatment days...next one on 20 Jan? Hope your second session went well..only one more FEC to go..totally smashing it! Nice to hear your experience of the cold cap...and hope it brings some comfort and encouragement to Rose5 and any other ladies reading this. I have to admit I dread brushing and washing my hair as the hair loss is quite upsetting...however you are absolutely right..focusing on what hair we have left is more important...plenty of thinning but no obvious patches so I can live with that! Good luck xxx

HI 

You are very lucky to be offered Cold Cap, as my hospital stopped doing this due to Covid 19, therefore I bought one off Amazon recommended by Doctors and cost around £100. I was not able to utilise this as I had a bone scan prior to the 1st chemotherapy treatment and by then the frozen gel sachets had all but melted. Now 3 weeks later and due for my second session on the 5th Jan, I have lost all my hair. I did suffer the sensitive scalp and achy follicles syndrome. Luckily I did have it cut pixie style from the long hair I did have, however as it all began to fall every where I shaved the remainder off yesterday. Very disappointed that my hospital didnt allow Cold cap and others do.

Hi HopefulSam, 

i feel devastated for you not being offered the same treatment as others..it seems madness to me that some hospitals do allow the cold cap and some don’t! Sorry sorry to hear that you have lost your hair..fingers crossed for a fast recovery and regrowth. Good luck with the rest of your treatment  xxxx

Hi 

Yes my next treatment is on 20th. I am on EC, rather than FEC but think it is pretty much the same - & it is the E that really goes for the hair. Brushing or just running fingers through the hair iswful but at least we still have some hair. Without the cap it would undoubtedly all be gone by now. And hoping for some regrowth in a few weeks. I have just ordered some wide stretchy hair/head band - hope that I will be able to cover up the thin parts on the top of my head with these. I am definitely not a headscarf person! I do have a lovely wig ready - not needed yet, especially as we aren’t going anywhere other than the hospital & out for walks when a woolly hat is needed
Hoping that  and others are encouraged rather than put off by our experience so far. I am certainly glad that I have given it a go. x

HopefulSam So sorry that you & many others aren’t being offered the cold cap at the moment. It is so sad as I feel that being given the chance of retaining at least some hair can be a huge mental boost to those of us going through this treatment. I have heard of some ladies having it withdrawn after starting. It must be devastating for you all. Good luck with your treatment 

Thank you

thank you