Just wondering if there are any ladies in the middle or finishing their chemo who cold-capped?
I was just wondering how they coped with the dribs and drabs of the hair loss. I am capping but of course hair still sheds. Should I keep washing my hair and just go with the flow of the hair loss or should I avoid washing it at all! Logic says to me that any hair which comes out was going to come out anyway but my inner-child says that the less I fiddle with it the more might remain.
Hi Ali Hope your treatment is going ok. I finished 2 months ago & cold capped my way through 3 FEC & 10 T. There were 4 of us doing it & the other 3 looked fine at the end. We shared the machines, so sat next to each other every time & rabbited on about our hair loss the whole time. We ALL experienced hair loss & hair anxiety. I have to say we washed our hair more & more infrequently during FEC as the hair loss continued, however it all but stopped for us all when we moved onto weekly paclitaxel & then started growing again. Unfortunately I had a bad experience with a nurse returning from maternity leave, who was not familiar with the machine & the cap wasn’t fitted correctly & I got a bald patch as a result. The hair had grown back into that area by 1-2cm by the end of chemo. I am telling you all that so you know that it did work for 3 of 4 of us & the hair loss was just really related to FEC. We all started washing our hair twice a week in lukewarm water very gently as instructed, but instinctively all felt that was too often. My longest was 2 weeks without washing. One lady did hers every 10 days & another went a whole month. It stops getting any worse after a while & self cleans. Yours very scuzzily BB x
I remember that feeling well. Blo*dy awful isn’t? Look it’s really worth remembering that you have over 100,000 hairs, 120000 if you are a brunette. 300 hairs in a pile look horrific, but in the overall context of how your hair looks to others it just doesn’t matter. If it’s any consolation, I am super grateful for what I have left & would cold cap again. My hair is growing from scalp, in the worst part, not 2 cm below ground. That will save you 2 months of regrowth for starters. Also you can always adopt that middle age man in denial approach & comb over some longer bits (take a lot at Sarah Perry’s blog she put photos on it if hers). If you ask me, after the shock of initial diagnosis, losing our hair is the worst bit, along with how long the treatment takes. Even if you end up being the unlucky one, at least you will know that you did everything possible to avoid it going. I have nothing but the utmost respect for ladies who just shave it off. It just wasn’t right for me. All the best with everything. You can do it! I’ve just graduated from radiotherapy, so really am on the road to recovery now. You will find once you get over the middle treatments 3 & 4, you will feel much better about it. xx
I finished 4 FEC & 4T two years ago and cold capped and although it felt like torture at the time I’m so glad I did. I lost about 50% of my hair and it went really thin on my crown but I managed to avoid wearing a wig. One problem to look out for is the fitting of the cap as one time it wasn’t washing tight enough to the top of my head and that caused a lot of thinning to the crown. I didn’t wash it for the first 3 days after chemo as the cold cap machine booklet said this was important and I used 0% herbal essences shampoo. I washed it twice a week and used Batiste dry shampoo in between which was a life saver. I was really careful when combing it and made sure that I held on to the roots to avoid pulling any hairs out which sounds excessive but every hair felt precious! Please persevere if you can because as others have said, a scary amount of hair seems to fall out each time you wash it but you do have far more than you realise. And once you finish chemo it does grow quickly to fill in any sparse bits so you soon look like you have a full head of hair.
Hi, I’ve just finished 4 cycles of of Doxetacil & Cylophsphamide, last one 22/2. I lost no hair after the first one, I did loose quite a bit during the 2nd cycle then it slowed down. I’m still loosing small amounts. It has gone much thinner but had grown through out, and new hair has started to grow. For me it was worth persevering with as I still have a decent covering.
Ali, that’s really useful to know as I now have to make the decision to cold cap or not and my gut reaction was not to but my 10 yr son is so upset at the thought of me being bald I am having a rethink ?
Hi ladies, I’m nearly a year post cold capping (10 April). I had 3 x fec and 11 weekly paclitaxol and cold capped throughout. My major loss was after first fec then nothing out of the ordinary after that.
I washed my hair once a week on chemo day - to wash out the sticky conditioner. I used an organic, perfume, colour and paraben free shampoo and conditioner. I was warned off baby shampoo, as if it’s strong enough to get rid of cradle cap what’s it going to do to fragile hair?
I lost may be 50% hair evenly, and it started to grow back straight away. When I finished chemo I had a natural 2 inches of layers throughout. I kept my hair in a bob as that allowed me to do comb over with pony tail to hide the thin scalp.
There are different cooling systems, I used paxman which attaches the cap to a fridge type machine. Some hospitals change caps every half hour or so with one out of the freezer. I found it best to put the cap on at room temperature then cool it once fiited - this gave a snugger fit than putting it on ready cooled as favoured by my first nurse. I’m convinced this is why I only shed hair the first time.
Other tips I was given include not brushing or combing, just run your hands through, use a hair net at night to reduce friction (and a silk pillow case/scarf), if you tie it up used a soft covered scrunchie not a normal hair band or clip, some people recommended some coloured powder to apply to your scalp to hide bald patches.
That’s enough of my rambling. Suffice to say the cold cap worked well for me, I had my first cut and colour about 6 weeks after finishing chemo and it looks strong and healthy.
PS - my eyebrows only thinned and eyelashes fell out a week or so post chemo but grew back really quickly.
Hi Ladies, thank you all so much for your advice and feedback. It’s really appreciated. This entire treatment is a total slog and all the cliches in the world can’t make up for it! But it makes such a difference that there are so many who can share their stories to help others!!!
Hi, just wondering if you’ve started with the cold cap yet and if so how you’re getting on? I’m due my second fec-t Friday and used the cap last time. I’m shedding a fair bit but going to use it again Friday…just hoping it’s going to be worth the pain and extra hassle…
Mine is really shedding a lot the last 3 days! Although not noticeable yet…in 2 minds whether to do it again on Friday…
The one thing that’s really putting me off is the advice only to wash it twice a week! I usually wash it daily…I’ve bought some dry shampoo but id rather have no hair than greasy limp hair?! ?
Hi Ali, how are you getting on with the cold cap now? Due my second chemo Friday but shedding loads the last couple of days…
Plus not sure it’s worth it if I can only wash it once a week? I’ve bought some dry shampoo but I’m used to washing it every day and would rather have none than limp greasy hair…I think…
Tonya x
Hi all. I have been glong through my treatment days at exactly the same time as Tina. I too cold capped the whole way through.
I have lost about 70% of my hair and have and patches but I can cover these easily with a bandana. Noone who doesn’t know what is happening to me realises and just thinks I have a new favourite fashion accessory. For me I feel it has been totally worth it even with loosing more than I had hoped. I washed once a week in a very mild shampoo, only used a wide toothed wooden comb and as my hair is almost waist length I have plaited it every day to help avoid too many tangles and so less shedding each day. It was only after the first 2 fec and the second t that Inhad more come out. I don’t think the cap fitted well with the second t. Make sure they do fit well for best results.
Bandannas are cool for the summer warmer weather anyway so hopefully once it has grown a bit I might be able to do a bit more with it come winter.
I am not going to sugar coat it mind… the last 2 cold caps were very hard and uncomfortable. I did cry when it got too much but that is partly because your emotions go all over the place too. Took ages to adjust to the cold and needed blankets and felt cold for the rest of the day. Like I say for me it was worth it through. You just have to work it out for yourselves ladies as it is a very personal decision.
Hello ladies…I’m due second EC next Tuesday. Used cold cap on 1st cycle but wasn’t convinced it fit right despite nurses saying it was. It wasn’t as cold as I was expecting. Well shedding started last night and have had some more today but only small amounts. I’m trying not to pull at it or brush it now. Will give cold cap another go next week but will be asking for a smiler outer cap to try and get a closer for. Fingers crossed!!! Good luck to anyone thinking of trying it. Helen xx
Thanks ladies. I had my hair cut in a short bob (ready to lose it before I knew about the cap), but the amount that is coming out over the last 3 days is quite distressing; it’s constantly all over my clothes and bedding and everywhere else! It hurts as well when lying on it; it feels like I just want to pull it all out…I washed it Tuesday and dry shampoo yesterday but today it looks and feels awful so I’m going to have to wash it…I’ll see what I’m left with then but I’m seriously considering not continuing with it tomorrow…for me it’s not worth having hair that looks and feels like this…I know I won’t be able to wash it only once a week…just a hard final decision to make…?
Hi Ann, I think they used a larger inside cap and then a smaller one over the top of mine, but as you’ll see from my other post I’m not convinced it’s worked for me…
Thanks Tandy. As much as I would love to keep my hair, As you’ll see from my other post; I’m not sure this is for me…if it’s in such a state that I have to wear a hat etc anyway, I don’t think it worth the extra stress and pain in the day…anyway going to wash it in a minute so that might be my decision made! ?
Hi Helen,
For me the shedding slowed down with the docetaxal. I have been saving the hair in a bag after each time of brushing it so I can see what’s happening. It was more with the first 2 fec. Less on the third, it was strange almost like my body was getting used to it or something. It was slightly more again on the 1st t as you still have some fec left in your body apparently. Then it has slowed right down for the last 2 t. I am day 7 post last t and it has slowed so much I think it is almost to normal levels when I brush it now. Hope this helps.
Vicky xx
Re: hair colour, there is an all natural hair colour by Daniel Field with which you can do a temp, semi or permanent dye. I’ll be doing it as soon as I have enough hair. They even mention chemo patients specifically. Have a Google, but it’s no point until we’re done. Am not going to watch my newly coloured hair go in the bin!!