Ok so next question - Having been warned by the Onc of the real potential for hair loss on carboplatin/taxol, I wanted to know your experiences. He has said I can try a cool cap during chemo which may help. Fine I'll give it a try! Might as well look ridiculous whilst I'm plugged in!
I know everyone's reaction is different but what about wigs? Are they itchy? If so are there particular types that are more comfy? Are real hair more comfy than synthetic or not much in it? What about the nhs ones?
Also given we are hopefully heading towards summer are long wigs hotter and to be avoided?
I'm in Kent and it seems there is a shop at Lakeside. I was wondering about taking a pre chemo research tip as I may not want to venture out whilst during treatment. Can anyone recommend good places to go or look at?
Having always had long hair in not sure I'm ready for the whole turban thing...
Any advice/info welcome, thanks
E
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I got mine on nhs went to get wig fitted when hair was coming out they match the colour I had high lighted hair the match was so good and the length when you first try them the wig looks a bit bulky once you get yours they trim it to how you like it some times a bit hot but love my wig never been itchy xxx
I got 2 wigs, one I bought before I losses my hair but looked the same. The other wig I got was a shorter style and this was bought through the hospital. You get it at a reduced rate.
I never liked wearing them as it was summer and I never felt comfortable in them, although people thought they looked great.
Hi. I had long hair and had it cut to above shoulder length. My mum bought me a lovely long wig that was very similar to my hair but whilst it looked great in the shop when the stylist fitted it on my head I never got on with it back at home - to me it always looked like a wig so I used the cold cap and kept my hair - just thinned on top. I'm now on second line chemo and using the cold cap again. It adds quite a lot of time into your day at chemo but it does work for me. Having said that the other ladies I see look great in their wigs or scarves/hats so I think it was just me being too self conscious!
I was able to get a wig on the NHS. Went for a fitting and tried various wigs on. In the end I never had a wig , preferred to wear scarves (lots of tips on how to tie them on the net) and woolly hats as the weather got colder. When I lost my hair completely and my head was hot in shops etc. I would take my hat off I was proud of my head and found that most people did not stare. I met one or two people with inspirational stories of their own which gave me a boost to fight on. I finished treatment in November 2016 and my hair is growing back really fast now.
Best wishes for your treatment. Let's hope for a good spring/summer.🌞💐
You may be lucky with cold cap but unfortunately it did not work for me so lost all my hair quite quickly. I have four wigs all bought from recommended places by the chemo team and I find them brilliant. I have a long one which I can pin back and the others are different lengths so can ring the changes as I like. They are all light weight and synthetic, not real hair but look very good. Not found them itchy, so far. I wear a turban at home when not going out but prefer a wig when out and about. They are quite secure too as I play golf and often it is quite windy when playing. I was given a voucher from NHS towards purchase and of course the VAT is taken off purchase too. Good luck.
Hi, My hair started to come out exactly 2 weeks from the date of my first chemo. I'd had my shoulder length hair cut to a pixie crop just before Chemo started and loved that look.
Then I cried buckets in the shower when the first bits came out and hung on to my hair for another 4 days during which it became limp and lank and horrid. Any position I put it in it stayed in (!!!) so time for hubby to clipper it off which he did to a grade 2.
Yes it was emotional but it was the BEST THING EVER! Really I felt sooo much better and was OK with the GI Jane look. That came off over the next few days in thd shower and I then occasionally wore scarves but found a great combat cap that I loved
I als had a great NHS wig which everyone coveted and I had it trimmed by a professional hair specialist which made it "me" but I only wore it 3 times. I was OK au natural.
Don't be afraid of wigs or cropping your hair, it's very doable and helps you feel in control although you may not believe that until you've done it.
Take care
Clare xx
I think your hair hasnt a chance with those drugs, you can try the cold cap but it may work for some and it can be uncomfy. I just got a short hair cut then went and picked out my wig,, When hair started coming out I got a shave and the wig was ready for me. It was a hard decision to make but I was clear Chemo wasnt going to win with my hair
Hi E , i used a cold cap and never needed a wig . I thinned a bit on top but not that showed , and kept my shoulder length hair . Hope it works for you - it needs to fit tightly and your hair needs to be pretty wet but the nurses will help . Does it look ridiculous? Yes ! Did i care ? No ! At least it kept the other chemo patients amused - most asked me where my horse was .... 😊
Honesty the anticipation of losing your hair is much worse than reality. I will admit to being a complete diva about my hair, having my roots coloured every 3 weeks lest some grey might show! However, because the hair loss coincided with me feeling much better as the chemo worked its magic it was a price I was happy to pay. I have 2 real hair wigs, the first of which I bought before I started treatment. They can be very tricky, I have been known to spend over an hour detanggeling after I have washed them. Also you need a mannequin head, clamp and pins before you can style them, all in all quite a big job. That said they do look very good and very realistic. Two months on from finishing treatment I am wearing them less and less and hope by the end of the month to have them back in their boxes! Best wishes, Lesley.
I went to the Lakeside shop and the lady there is lovely,I live in Kent too.I bought synthetic wigs,but they look amazing and she made me try on a wig I would never have worn,but have stayed with the style post chemo, advice would be from me to get your wig before you start your treatment so you are comfortable with your transition.
I personally didn't go for the cold cap,my hair wasn't worth saving and there are mixed results.
My son shaved my head as soon as it started falling out and it has grown better and thicker after chemo,
but, we are all different and I can only advise and wish you well and good luck whatever you choose,
I used the cold cap and didn't loose my hair . Did have thick hair to start with and thinned a bit after 2 nd cycle . After 4 th cycle had a small bald patch on top but didn't show .
The cold cap is a shock for the first 15 mins and then you get used to it . Does have to be very tight . I also got a wig on the NHS which was a good colour match and fitted well so was prepared incase I needed it .
What would I do without you wonderful ladies? A mine of information and practical advice. I think I'm going to go for the cold cap but am going to take a trip to the wig shop in advance. My hair is a big part of my identity and I'm not sure I'm ready yet to embrace my inner Kojak! Time will tell!
Having always been adventurous with my hair, numerous styles, long and short plus every color under the sun, I made a decision to enjoy my baldness ! After all it was a style I had never tried.
I had an NHS wig and took the family along to choose it. I really liked it and there is no such thing as a bad hair day with a wig. I also bought a number of stretchy turbans in pretty colors. I wore these on their own or with scarves and blingy hair bands from Primark of all places.
However most of the time I just went bare headed. It was easier and I found it strangely liberating. I actually liked my bald head and secretly I think it made me feel rather empowered. In a funny way it felt like I was saying to this vile disease what ever else you do to me you will not make me feel ashamed of how I look.
Anyway once I finished my carbo and taxol it soon grew back. All the very best in deciding what works best for you and power to the baldies!
I had nhs wig and I bought a few fun wigs because I thought why the hell not ... let's have fun with this ... I was sure that I would never venture out without a wig but I did just had cap from Hard Rock Cafe when my ears got cold (often got cold in house too so I had soft beanie hat ) I was terrified beforehand of my hubby seeing me bald I fretted a lot but he was fine with it all... I didn't go for cold cap as my onc said you will lose your hair anyway and I'm a wuss with cold my hair was quite fine to begin with so I guess she decided I had no hope of keeping it ... I had a wine and wig Wednesday party when my hair began to thin and all my girly friends wore a fun wig too ... are wigs itchy not especially but they can become uncomfortable and make you hot and sweaty o er Mrs .... but at the end of the day it's personal choice you chose ... I would have a wig as backup ... I never wanted to be a turban wearer either but I've seem some fab ones and scarves too I'm imagined that I would never tie it properly and it would slip off ... all the best for your treatment and good luck with choosing a fab wig 🤗
I bought them from the shop which I was referred to for my NHS wig.
They were not offered but I had a nose around the shop and noticed them. They have a strip of Velcro which I suppose is design to stick to your hair but having none I pushed them under the front of my hat or turban and they stayed put. I think I paid about £15 for them.
All the best
Juliax
PS my turbans were made of bamboo fibre which was really soft and cool. A bit more expensive but well worth it.
As a cosmetologist I can tell you, if you go with synthetic hair you can't have any heat to it, no blow dryers or a curling iron. But most wigs come style, and real hair wigs are expensive but you can still style them. Also if you do go with synthetic you can used plastic rollers or Velcro rollers too.
I'm 44 and just started weekly taxol last Tuesday and never lost my hair before, it terrifies me a bit so am trying the cold cap. It was very cold and and uncomfortable but I'm going to try to persevere!
I have also got a wig in place as feel I need to be prepared, it's half human hair and half synthetic, in fact I'm going to have it cut into (hopefully) what looks like my style this morning and bring it home as I really don't want to be stuck without one if the cold cap doesn't work. I'm dreading the cut as if it doesn't feel like me then I know I won't want to wear it so hope the lady is good! I've tried lots on and this one is more expensive but soo much more comfortable it's hand weaved and lighter so I'm hoping if needs be in the summer I won't swealter too much! I'm definitely not the bald and proud type unfortunately so need to have all angles covered!
Good luck wig hunting and hope the cold cap works for us!
Good luck Naomi , it's hurts in an aching way for the first 15 mins so just breathe you way through it then it just numbs to a cold feeling . The first time was the worst as I didn't know what to expect but it gets much easier once you've done it once . Wrap yourself in a nice warm blanket and just get someone to cheer you up for the first 10-15 mins and bring you a nice warm drinks xxxx
Hope you not feeling too bad today and got done sickness tabs to take - best taking them regularly rather than waiting for the sickness to build up . Pleased you coped with cold cap - it really worked for me xxx
I'm not sure that the cold cap was fitted all that well as I could press down on a couple of areas which made it feel colder. Do you think it is ok to wash my hair today?
Should be fine to wash it with something gentle , brush it gently and dont overdry it with a hair dryer or chemicals It can be hard to get the freezer cap to fit really well - mine wasnt quite tight on my crown and my hair did thin there . Have you tried a smaller cold cap ? They should have a few sizes in . It should be quite hard for the nurse to pull it onto your head . The nurse who usually helped me with it was tiny and from the phillipines . She was so kind but practically broke her fingers pulling my cap on . . She was as thrilled as me when it worked .The lycra overcap needs the chin strap pulling tight too - great hamster cheek look
Glad you are doing well and not feeling too bad at the moment. I've got a kidney function test next week before they'll let me start the chemo. Something about radioactive dye and blood tests. Takes about four hours! Assume I'm not going to glow! Did you have this pre chemo?
No I just had a blood test-perhaps your blood test showed something they want to check out? Hope it goes well but sounds a real nuiscance. I had radioactive stuff in me for a heart stress test and scan before my op.
Hi E, I don't know where you live in Kent, but there is a hairdresser in Maidstone that specialises in wigs for cancer patients.
I went and tried them on and actually chose an NHS one that I liked. The ones made of real hair take a lot of looking after, whereas the synthetic ones are wash, shake, dry and ready to go!
When I actually lost my hair, I decided that I couldn't face the thought of wearing a wig - my scalp felt sensitive and it was mid summer, so I never ordered the wig and wore cool hats and scarves.
I know some ladies love their wigs, but I also know that quite a few buy a wig that they only wear once or twice. Try a few on and see how you feel.
I have used the cold cap for the 6 months I was on weekly Taxol.
I do feel it helped to have my hair short as the cold really gets to the roots .
I finished 2 weeks ago and have kept most of my hair, only I noticed it had thinned a little. It was well worth using it and a would recommend anyone giving it a try. The trick is to make sure the caps fit really tight.
I had a small inner cap and an extra small outer. It is worth taking some time to see which one fits the best.Also use a ph neutral shampoo.
I was given a wig from the NHS, but it looked like a wig to me, it was too shiny, it was nice but not me and I gave it back unworn. I found a website called simply wigs, I bought 3 monofilament wigs wigs from them in same colour but different styles, (I've always wanted curly hair so took the opportunity to experiment but in reality one wig is fine) they were superb (I still have them just in case 🙂). Monofilament and lacecap wigs are a lot lighter to wear and because of the way they are made they look like your own hair, the roots look just like your head and you can move the parting around to suit. Mine were 'rooted' so the roots were slightly darker than the rest just like my own bottle blonde with highlights. And they were were synthetic, I believe real hair wigs are more difficult to look after, I just washed mine in their shampoo, rinsed, squirted a little conditioner on, shook it and put it on the stand overnight, in the morning it was ready, after another good shake, to wear. I also got a wig comb that has really wide teeth and doesn't pull the fibres at all.
Ok They're not the cheapest you can get but I got so many compliments on how nice my hair was from people who didn't know I wore them and even the chemo nurses and blood nurses at Christies complimented me on my 'hair'.
I'd suggest getting a wig before you lose your hair totally and having it trimmed to suit so your hairdresser can see how your own hair is and make the wig as near as you'd like it to be.
Good luck with your chemo, you can do this. Sending lots of encouragement, hugs and love ❤xx Jane
Have a look at Heathers Hair: heathershsir.co.uk. Some good help there and a charity that can help you.
I decided against wigs as they seemed expensive and the ones ai tried on were scratchy. But it depends on your budget, some more expensive ones are good.
I was lucky as mine fell out in winter and more a lovely winter hat instead. A head scarf eventually became more comfy as summer arrived and if you get some good accessorising etc, scarfs can look OK!
I think after my hair fell out, having no hair somehow became part of my new identity and tried to roll with it. But some ladies have wigs and one lady ai met had an incredible one. Good for social functions, weddings etc if you want to blend in more.
I had carbo/taxol too and my hair started falling out after just over two weeks. I was told that the cold cap can work but may well not . I did notice that the ladies who had it all found it very hard to bear and several gave up. I believe it is like getting your head frozen and not for the faint hearted. However you could try it and ababdon it if it is too much to bear. I decided against because I wanted to be comfortable and deal with getting the chemo without any added stress! In Scotland you get an NHS voucher and a choice of hair salons to go to . They advise going whilst you still have your hair as it makes choosing easier. The voucher is for a synthetic wig, but I think they are fabulous ! No styling is required with synthetic and so you just pop it on and it always looks presentable. I did not like the idea of a stranger's hair !!(-silly I know),so I would always choose synthetic. A good quality one is an excellent choice. The ones by Rene of Paris are fantastic. With long hair you will have no problem finding one. The salon gave me one of these and even trimmed it to suit-all free. However , I looked on line to order a spare one and I found Wigs4u.co.uk to be an excellent company to deal with. It is hard to know what colour to choose- it is trial and error. At Wigs4 u a I got a wig by Henry Margu in colour 6H which is a lovely deep chestnut brown, just like my own hair! It was a good price, very comfortable and I wore it in the Med in July! (with a little wig liner-like a large pop-sock- sold by the same company). My skin is sensitive but it was very comfortable. In the Renee of Paris range my colour was ginger brown. This is the same colour approx. as the 6 H colour . The word ginger might out you off but it is a lovely mid-dark chestnut brown. I have washed and stored my wigs just in case I ever need them again. They were a life-saver for me, enabling me to feel like me again with no stares etc. I went to two weddings in them -and felt confident and very presentable. Lastly , if you go to a salon for your NHS one you will gain experience in wigs and colour/fit and that will help when looking online. There are some very cheap wig companies on line which make the wig to order sent form China and they take months to come. Beware of these! I got one after many months. It was a terrible fake colour, nothing like the picture, had a very strong chemical smell which would not go after weeks of airing, was cheaply made and it shed hairs at a fast rate, somethig a good wig will not do! Needless to say it ended up in the bin. I never wore it it was so awful. Refunds were not an option. So DO NOT use Wig Smart .co .uk-Please beware anyone reading this NOT to order from them- a complete waste of money. I wore turbans at home at times, but I mostly wore my wig because it made me feel like my old self. Everyone has a different experience, but I would really recommend taking time to get a good wig to suit you. It can be very worthwhile. Best of luck. Hope that helps.
I have a nice fringe bought from Wigs4u.co.uk. I stuck it (adhesive on the base of it) onto a stretch cotton black hairband. Then you pop on the hairband with the fringe attached and then you can put any hat you want on top, woolly beanie, etc.
Just another voice in support of the cold cap - it's not as bad as it sounds! But take extra layers/blanket to keep your body warm and also conditioner very important to put on hair after wetting it - so the ice doesn't stick to the cap and pull your hair out when you take the cap off! Take something to look at/concentrate on for the first 15 mins to take your mind and off the cold, also a headband to put round the hairline and keep the freeze off your forehead.
I've done 2 lots of taxol for my sins and used it both times, I hardly lost any hair.
I found out that Toni & Guy have a Strength in Style service and went along to find out more.
They have staff who are trained in hair loss and they made it all feel really normal. We looked online and chose a few wigs which they ordered in and then I went back a week later with a friend - I tried them on and my friend took photos and we decided which one was best. It was a really fun afternoon and we had a private area set aside.
The Strength in Style service is free and you just pay for the wig (they have a range of prices ranging for synthetic from £80 to £180 if you fill out the VAT form - the NHS one I'd seen was £64). They steered me to the cheaper end, recommending synthetic over real hair as they're easier to maintain and actually with everything else going on, I don't want to be thinking about styling my wig. Toni and Guy will trim the wig to suit you and they will also wash it. They talked about losing my hair and I'll go back for more advice when my hair starts to grow back.
I was adamant that I would just be bold and wear scarves but I'm enjoying my wig. I've noticed more people looking at me in my scarf than in my wig - that doesn't really bother me but I figured that it might be good to have a disguise if I'm having a bad day and want to hide a little bit.
I haven't worn my wig to work as everyone there knows I've lost my hair and as I started off wearing scarves I'll probably stick to that. I have worn it out with friends or when I've had visitors and I'm enjoying it and seriously hoping my own hair grows back looking this good.
I'd recommend having your hair cut quite short as mine fell out gradually which was really messy (it was short but not short enough) - I had a couple of beanies from a site called bold beanies which contained the mess a little bit while I was moulting. They're also handy to wear under scarves.
Also, if you're used to long hair, there are some good scarf tying videos on you tube which show you how to tie a scarf so it looks a bit like a pony tail. I had short hair before so tie my pony tail into a bit of a bun.
Emsymits. As an expert in wigs, ( I create and sell human hair wigs for a living), I must say that so many advancements have been made in the contsruction of wig caps. They are not at all itchy. I have provided wigs for quite a few cancer patients including my mom. She was my full motivation for getting into the wig business. I would stick to the mono cap wig in human hair. It would definitely hold up a lot longer and would have the least chance of being itchy. This cap type would hold on your head and there would be no need for any major adjustments. I do not have cancer but often wear wigs. When I need a quick fix the mono cap is my first choice. If you need any more informaition please feel free to inbox me.
Thanks for that info. Fab to hear from an expert! I'm going to phone the hairdresser today to book in for a massive hair chop. I figure if it is shorter (I've got shoulder length hair) it will a) be easier to fit under a wig if it thins b) be less likely to pull as it has been said hair weight can pull the follicles c) less hair to insulate my head when wearing the cool cap.
That said I've wasted 2 hours yesterday on the web looking at hairstyles...
Ok I did it! I went to the wig shop and am now the proud owner of an extra set of blond locks incase mine fall out. It was quite an OK experience actually and I was pleased they had booths for you to sit in whilst trying on. The lady was lovely. As when I'd finished my own hair looked awful I actually wore the wig to go home in! My husband is quite keen on my 'Jennifer Anniston' look.
My advise is don't cut/shave you hair off until u have had your first taxol. Unfortunately I was all gun ho about th "hairthing" .shaved my head in preparation for the wig only to find out I was allergic to taxol and only ever had 1 dose. 😂😂. Thankfully by the end of y catboplatin cycles my hair had grown back. 4 Months post chemo I have had 3 hair cuts and adore my thick curly hair!
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Caelyx and hair loss 
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