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Any 'cold cappers' out there who are mid/finished chemo??

Tandy 4
Community Champion

Re: Any 'cold cappers' out there who are mid/finished chemo??

Hi guys..... I also save my shredded hair..... First time washed after chemo no.1 I cried so much it was an instinct!?.... I still collect it after washing, combing, off pillow (though that's not much! Didn't bother with silk pillowcase either!). I collect it off my clothes when I get undressed... Sad eh!? But it's a coping mechanism for me to see what I've lost and what I still have! 👍🏼 Lost about 60% collected in bag.... Lord knows how much has gone up the Hoover or fallen when out and about? Like Vicky, I'm day 7 post **bleep**e no. 6 T. Mine slowed right down after number 5. I seem to have a fair bit shed this morning though and hoping it'll soon stop all together and grow! I can't stand to see the grey!😖 Desperate for a decent good massage wash of hair! Desperate for tidy up and colour!! Told 3 months before colouring? Is this right? May have to go in for a dry cut at this rate! Very straggly now at ends. It's seemed to work for us eh Vicky? I'm glad I tried, it was hell I won't lie. Got harder very time,.... But I'm not bald or looking like a victim to the poison . Xxx Tina 

red_robin
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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
Tonya
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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! 😢
Tonya
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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....
Tonya
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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.....😢
helen1971
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

For those ladies who cold capped throughout can I ask does the shedding continue once you change to docetaxil or does it slow down/stop?

Ali-B
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Hi Tonya,

I decided to stop cold capping in the end for my own comfort and conveniance. If your hair is a bit shorter you might find you cope better with the dry shampoo as shedding hair when you wash it is quite distressing do try to stick with the once a week 'wet' wash if you can. It's true what others have said about the amount of hair one has. I seemed to shed so much after two rounds but still have a decent amount left. I just got very sick and tired of shedding everywhere and if I wore a scarf or gently combed my hair, it was upsetting me greatly. Since I cropped it to about an inch it's been easier to manage.

HTH

Ali xx
helen1971
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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
red_robin
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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.
Tonya
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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
Tonya
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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?! 😳
Tandy 4
Community Champion

Re: Any 'cold cappers' out there who are mid/finished chemo??

Hi Tonya, I've cold copied all through my FEC-T ..... Had last T cycle Friday. Though each time longervtonadjystbwith cold fur to thinning hair I kept going. It's seems to have worked for me and shedding has slowed. I've list about 60% of hair, but it was thick to start. Silly though it sounds, I've what I've lost in a bag! Well, alert from what's gone up Hoover, list when out etc or plug hole. But it's jest me going seeing what I've lost and what I've got left holding on! It's ver thin, dry and brittle and I only comb once day.... Wash once a week. Wear hat if out, but it's ok to take off indoors, cafes, shops. I have a wig but worn once. My onc nurse said try to avoid wearing while I still have hair or it may irritate scalp. 

Any questions Hun please ask!? You can message me if prefer. Xxx Tina 

Tonya
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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....
Ali-B
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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!!!

Ali xx
riversidedawn
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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.
Ali-B
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Hi Helly,

 

Definitely am more comfortable with the crop/pixie cut. I would recommend it if you are considering it. I guess it depends on your hair and confidence of course. It was a big relief once I'd done it as the shedding was a constant 'kick in the gut'. I am even thinking about giving up the cap altogether but thinking and doing are two different things. The shorter hair means it's easier to wash and the dry shampoos are easier to make the most of. I am trying to be pragmatic about something so very emotional!!! A lost cause!

 

I also think with the shorter cut you'll get better cold cap 'coverage' and so you'll avoid any accidental bald patches. Although I am sure the hair will thin. Longer hair might mean you can disguise it? It's 6 of one and half dozen of the other I guess. 

 

Good luck with your decision and I am sure your boy will get there. I really understand how hard it is to decide, I was in bits trying to think on what I wanted to do. It's all a f£&king minefield at times!!!

 

Ali xx

helly18
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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 😕

Ali-B
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Hi Ladies,

 

Just on the offchance you are curious - I decided to crop my hair as the constant shedding was getting me very down. I haven't gone bald but just cropped it to a 'grade 8' and I hope the cold cap will work well with that length of hair. I have lots of whispy bits around my fringe and neck/nape so I don't look bald either.

 

My scalp was feeling so uncomfortable all the time and wearing a scarf/beany/buff was just making my scalp feel so painful what with my hair being squashed to my scalp all the time. 

 

I have to say it feels more comfortable and I hope to keep it as it is throughout my treatment.

 

My 2ps worth.

 

Ali 🙂

Ali-B
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

I am actually very hesitant to wash my hair at all due to seeing how much hair is lost during the wash. Since my second chemo this Weds just gone I have given it quick blast with the Batiste dry shampoo and putting a hairnet on under my headscarf to prevent leaving a trail!! 

 

I will try to only wash it once a week but I think any mild lathering shampoo will be fine, I found baby shampoo worse as it didnt lather enough and just dragged hair all over the place causing more hair loss IMHO.

 

Ali xx

Tandy 4
Community Champion

Re: Any 'cold cappers' out there who are mid/finished chemo??

Hi everyone. I'm 10 days past cycle 2 of T (had 3 FEC) so one more to go! I'm cold capping using Paxman system. I've probably lost about 60% hair, leaving it very thin, dry and brittle but it's hanging on in there!? 

My McMillan unit nurses have just done a refresher on the system and say it's ok to wash hair straight after cycle if feel up to it? 

It's been a week since my last hair wash and I need to do it today...... Though dreading it. My head/scalp has been feeling tingly/fizzy past week and I'm afraid of what's going to happen, though shed everyday. I'm struggling with losing lashes and brows too......

My question is, are any of you using anything other than gentle shampoos? Any oils or scalp treatments? 

Seems unclear when we can start using things like vitamins etc? 

Any advise appreciated xxx thanks Tina

helen1971
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Evening ladies. I start my chemo on Tuesday and intend to try the cold cap. Any tips for getting a good fit? Thanks Helen x
Cag61
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Thanks for that Rachael, I have been washing my hair with simple shampoo. It is thin on the crown so will check that it is fitting tightly. It felt much colder this time but soon settled down !!!ive wondered about using hair thickening shampoo soon, Elvive do one. 

Carol xx

Ali-B
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Thank you Ladies,

 

Your feedback is really appreciated. I have just had my second EC yesterday and it's still shedding although the cap felt much colder this time around as I started about 2 days before my next chemo so it was already thinner!! 

 

I have no idea how much will be left but will keep on capping!

 

Ali xx

anngc
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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.

 

Ann xx

rachelr
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Hi Ali,

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.

All the best.

Rachel 

Cag61
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Hi, 

i am here for February starter. I have just had 3rd FEC and probably lost about 50% of my hair. I was told that the time it would all come out would be after 2nd cycle...I didn't lose much at all following it just strands. I did find the cold cap uncomfortable for the first 10 mins yesterday as hair was thinner but kept going. What I like is everyone on the ward is feeling hot and I'm smug and saying how cool I feel !!!!! I wanted to try and keep my hair as I have my stepsons wedding in October so wanted to be back to 'as normal ' as possible by then. I have a wig which everyone loves, but I hate as it itches. I have loads of soft hair band...they slip a bit, but purchased a black wider and sturdier band from Amazon which stays in place and looks fine. 

Eyelashes and eyebrows still in place too. 

I am having 3 T followed by op then rads. 

Stay strong and Big Hugs Carol 💐Xx

Ali-B
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Thank you so much Bibi44 - your positive words have really made a difference to my outlook today. *Thank you*

Ali xx
Bibi44
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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
Ali-B
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

Wow Bibi44,

 

Thanks so much for all your detail, it makes considerable sense. After cutting my hair into a short bob I am already at the one-wash-a-week-if-i-can-make-it stage I am also thinking of doing the dry shampoo inbetween washes (which is essentially talc) if I feel too stinky! I am on 3xEC (FEC without the F) to be followed by 3xT. Having my 2nd EC tomorrow. I was just SHOCKED how much hair came out of the shower this morning and trying to gently comb through (with a wide toothed comb) seemed almost pointless as the masses of hair just glided out!! I was almost ready to get the clippers out there and then. 

 

I *will* keep cold capping and many many thanks for your most helpful reply.

 

Ali xxx

Bibi44
Member

Re: Any 'cold cappers' out there who are mid/finished chemo??

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
Ali-B
Member

Any 'cold cappers' out there who are mid/finished chemo??

Hello Ladies,

 

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.

 

Any thoughts??

 

Ali xx