Hi you lovely lot.....🌟
I start chemo wed. And I've asked my nurse about cold cap and she said they don't offer it as it's time consuming.
And it would be private.
Anyone know how to get this ?
Thanks. 💋
Loosing my hair very scared. : Hi you lovely lot... - My Ovacome
Loosing my hair very scared.
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Zena41
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Are you sure? Is there anyone you can double check this with? Maybe your consultants secretary?
Hi that's what she said when I rang they don't offer it with that chemo eitha ? Confusing maybe it depends on which chemo u have.
I have appt tues with them so will ask again
My hubby offered to pay for the real hair wig but that's £400 + 😤
Good idea I will ask consultants sec.
anything worth a go
X
Sounds a bit odd to me but then I never bothered with it or with a wig either
Yep strange as lots of women used it on here with same chemo.
Did your hair grow back fast? I've never had short hair
It took a few months I like it when it first came back and was very short but it grew back darker and very curly
I assume you are having carboplatin and taxol? It an expensive business having cancer
Hi I rang drs sec, she said she knows nothing speak to my nurse left msg with her. 😤
Which nurse?
It maybe that your particular hospital doesn't offer it but if that's the case, I want to reassure you isn't necessary to buy a real hair wig nowadays. Most synthetic wigs are very natural looking and your hospital is likely to have some kind of subsidy. Do ask your CNS. Have a look at some on-line wig suppliers to get an idea of the styles you like. You might like to get some hats and / or scarves as well.
To add to this, I was given a voucher for an NHS wig when I was diagnosed and was recommended the synthetic wig as easier to look after. They also gave me a list of local wig suppliers. The wig was absolutely fine. My own hairdresser trimmed it a bit for me to individualise it.
As regards the cold cap, our hospital isn't a big one and there are plenty available - more now than when I started in 2015. I've even seen guys using them!
Just an FYI I loved my cheap synthetic wigs better than the real hair. Easier to care for and held the style better. I had a few that my hair stylist cut to better suit me. Some days I was blonde others a red head. 😃 Also lots of cute hats and scarves! I was really dreading the whole bald thing but it ended up not being as upsetting as I thought it would be.
I agree and became quite good at tying the scarves and wearing colours to suit my clothes.. now my hair is about 2 inches long and white and curly.. but getting used to that too now 😎😊
Aww thanks I'm scared of showing my head , and I know my 2 yr old will pull it offx
Hi
I used the cold cap once but found it very uncomfortable. My hair started coming out about 2 weeks later. I decided not to continue with the cap as I had already lost so much of my hair. I did struggle with this for a while wearing scarves and hats but one day I went out bald and I felt liberated.
I bought a fabulous wig that cost less than £200. You can't tell it's not real hair and it's so easy to take care of. I was advised not to get real hair as it is more difficult to look after.
I did wear my wig if I was going out but several times when I felt hot I just whipped it off and put it in my bag!
Since then I've had another course of chemo which was different so my new hair growth has just thinned slightly.
X
in reply to Zena41
I got a real hair wig, wished I had saved my money. The synthetic Ines are so much better, plus for the same money you can get s few and change your style , and have some fun.
The real hair ones are very hard to look after, and I found them very thick and heavy. Xx
Hi Zena, my friend used the cold cap there was a few sitting in the chemo clinic. She asked her onc & they had to have it arranged for the day she had chemo. It is time comsuming to put something over her hair it was wet maybe oil. The hood went over her head with a straps under her chine the machine was tuned on & fed cold into her cap. There were different size capes for different size heads. It take longer to have this cold cap. Which made chemo a lot longer.
We are in the UK & that might be the reason but if you are in the UK I can't see why you have not been offered it.
No one has said it's private it sits in the chemo clinic. I am at the Southampton hospital maybe its because we have a good size chemo clinic with lots of nurses. I would ask your onc to arrange for you to use it. Good luck take care Cindyxx
Yes this I have been told unless they have changed regulations ...?
I am in Manchester.
They must have changed it then. My friend had the cold cap at Manchester (wasn't that successful anyway). X
They do have it at Christies but the results are very mixed and the ladies I spoke with there when I had my treatment said it was very uncomfortable and the duration of the treatment day is extended significantly.
Hi I'm quite happy to sit their all day just want to save my hair. 🤷♀️ I'm in christies they say don't offer with carb/tax now?
Who at The Christie said that was it the chemo unit?
No my nurse.
A nurse at The Christie or NMG?
If you are not ready to give up yet you could try contacting the chemo unit directly and/or contacting PALS (the info is on their website) I think think the infusion time for catbo/taxol is about 7/8 hrs unless you are having weekly?
Hi I just rang the chemo unit at christies and she said they can only do it with weekly chemo and my treatment is Every x3 weeks. 😤
Are you allowed to switch to weekly.......just a thought?
I don't think so but shall ask tommorrow at appt. x
Hi
I used cold cap successfully . It was offered on NHS at Guys with carboplatin and taxol . They had several units on the chemo ward and it was never a problem one being available . Adds about 30 mins to time and has to be on when you are having premeds and left on for 15 mins after chemo to defrost. I used to spray my hair and apply conditioner and once you have had it fitted the first time you just tell the nurse the size you need .
Can't believe you are being told you can only have it if private patient . You should have the option to use it if you want.
Maybe worth ringing Ovacome support line tomorrow for advice or Macmillan .
Hope you manage to sort and best wishes for your chemo trreatment.
Love Kim x
Hi yes I'm having same chemo as u and they say they don't offer it with that anymore at christies...?
Hi I've just finished 6 months of weekly taxol (Bristol) used cold cap and for me it was fantastic. They only had 2 machines there but it was pretty much always ready for me when I got there. It does add a bit of extra time but totally worth it to keep your hair.
I think you need to push for this , as far as I knew they have to offer it on NHS everywhere in uk. Surely it should be standard throughout hospitals? If you want to use it they should give you the option.
On Tuesday tell them you want to use it as they need to book you in for chemo 'with cold cap' as they have to get machine ready first so they have to know in advance.
Good luck Zena, let me know what they say, thinking of you xxx
Hi Zena, I do hope you get this sorted. The cold cap wasnt even mentioned when I started my first chemo 10 years ago, and Id not heard of them so I lost my hair, got a wig, wore it about three time think.... My hair has always been my crowning glory, I never venture out without it looking exactly as I want it but for some reason and, Im not sure why, losing it never once bothered me. When it started to grow back, thick but finer and different colour ( Id always had really thick dark coarse hair) I went into work on dressdown day minus my scarf, got great reactions. I still to this day dont know why it never bothered me but I know it does upset a lot of ladies (and gentlemen) but as soon as chemo stops it starts growing back and you will be amazed how quickly it does. Sending you a big hug and best wishes for Wednesday xx
Synthetic wigs can be quite cheap and still look great. I ended up with 6 of them! Though losing your hair seems like the end of the world at the time it isn't, trust me! 6 months on I have an amazing head of hair - after losing the lot - I originally was a long, straightish dark-haired brunette and now I have amazing blonde curls - the blonde is fake but the curls are real, it looks like I've deliberately styled it but I don't do a thing but wash it! Once you get around to the idea of wigs it's just another thing to put on before you go out the door. You should have gotten a voucher from the NHS to cover a wig and fitting - they even trimmed it to match what my (old) hair was like. The cold cap was too much to bother with considering all the rest of what I was going through. 
I had the same chemo. I wasn't offered it but I knew my hair loss was going to be total anyway. I saw people having it and it looked torture with them swathed in blankets and towels. The chemo took long enough without adding the extra time and for no or very little result. I lost every hair on my body and only wore my wig once. But it was winter so it was all hats and I never really ventured out much. It's growing back now short but very thick. It was very hard but I got through it. I am a year on from diagnosis and have had 2 clear 3 monthly check with a CA125 of less than 10. Good luck. X
I wasn't offered Cold cap either and focused my energy to icing my hands and feet so as to try to prevent neuropathy- partially helpful. If the cold cap had been offered I would have been nervous that it would have prevented the chemo from getting to the brain (not that I wanted chemo brain LOL but to prevent the cancer from nets but my oncologist said the cold cap only goes to the scalp so no danger). Everyone's experience is different but I found I had a few good cries over my hair, after a week had it all buzzed off and then quite frankly enjoyed the feeedom. Also tried to tell myself that the period of chemo was a time for my body to rid itself of all ills, namely the cancer cells , but the hair was also a part of the shedding and starting over. I Used a synthetic wig - highly reco that over real - when I needed to be "formal" otherwise used scarfs. When my hair started growing back - with a great wave I never had before (although I lost it within a year) I got so many sincere compliments on how I looked with short hair (even from people who didn't know me with long) that I decided to keep it super short even after it starting getting longer. NEVER would have had the nerve to do that before cancer. I can't wear pierced earrings anymore - had reactions - so wear it short without earrings. My feeling now is life is too short to be fussing with my hair as long as I used to but everyone is different as to how important the hair is to them.
I can't believe this, they're supposed to be there to help and make you feel better. My local NHS hospital had several units. Yes, it takes more bed time but not much of theirs. Once it's on they don't have to do anything until you're finished and then just take it off.
It's just creaming your hair, seconds, placing the hat on and making sure it's tight, can't be more than two minutes, then plugging it in and that's it.
I'm discussed with them. xx
My synthetic wig better than my real hair ones, v stylish
hi
I used the cold cap twice but found it very uncomfortable and my hair came out in patches. My loving sister in law shaved the rest of my hair off for me.
I loved buying scarves and hats to match my outfits, and wore a wig to go on nights out.
My hair has come back very thick and salt & pepper colour. I have to say I felt less stress once my hair was gone.
Hugs Ellsey xx
I had it but it din't work....think it stands a chance if you have very thick hair...some insurance policies contribute to a wig...I agree with others prefer synthetic(!) love Chris xx
Hi just add in mcr I was told they don't offer cold caps for carbo/ taxol cos the treatment is so long. They don't even offer it for this treatment in the private chemo ward. I ve seen it used though for shorter treatments.
And I agree with the other ladies. Go synthetic for a wig. Also believe me, you feel worse when you have lost some hair than all. And if you don't get a cap, my advice is to crop your hair before it all comes out. It just helps x
Hi Zena, The hair loss is a nuisance but really not the end of the world.
I got my wigs from a website called 'simply wigs'. They're an amazing group and so very helpful, I had 3 (same colour different styles) and they looked fantastic and I was complimented on my 'hair' on quite a few occasions. Real hair wigs take quite a bit of maintenance whereas the man made lace cap ones I had were so easy to look after and getting ready in the mornings took no time at all. I still occasionally miss just being able to shake the wig and plonk it on when I'm busy shampooing and conditioning and then messing with the hot brush every morning.
I wouldn't worry too much about the hair loss, instead concentrate on getting through the treatment and being as well as possible. Then there's the excitement when your hair comes back and you find out what colour you really are 😂.
Keep as well as you possibly can ❤️Xx Jane
I find it hard to believe that it is not available. I had to push for it. Noone told me that it was available and I only found out about it by reading posts online. I asked for the cold cap at my first appointment at the oncology clinic and was told it was available. When I checked with the appointments team I found that I had not been booked in for the extra time fir the cold cap. I had to insist and eventually got it. It was as if it was a closely guarded secret. It was very well worth a bit of discomfort-I kept my hair although it thinned a lot -I never needed to wear a hat or scarf. I think you should push for an alternative hospital as it is definately available on the NHS.
Hi Zena, I do hope you find something which works for you and best of luck with the chemo. I wrote a blog post about hair loss during chemotherapy here: cancercarerchats.blogspot.c... and cancercarerchats.blogspot.c.... Hair is such a big part of our identity so it will take some time for you to find your sense of self again.
Best wishes
CancerCarerChats
Hi everyone.
Overwhelmed with the response!
I don't need a nursing team I have got u lot.....😘
I rang the chemo unit directly and they said they do do it with my chemo but only weekly and I am prescribed x3 weekly. 😤
Oh well I shall get a synthetic wig I am going to look Tuesday. And I have also been sent a voucher now.
I shall also look at all the websites u have given me ladeez.
I know my fears are just my two yr old pulling it off in public.
So thanks again for your positivity everyone 💋💋💋
Do call into the Macmillan centre ay the Christies and see if you can sign up for a 'Look Good Feel Better' session. They used to run them regularly- yiu get lots of great tips, samples and advice as well as it being a really positive experience... Also, if you haven't already found it, then have a wander over the road to Maggie's Centre. You'll find it a lovely haven with lots of support, friendship and decent tea!!! Wishing you hope & strength xxxx
I believe they still run them in the conservatory in the glass corridor, great fun and the make up tips are really useful for boosting our confidence. There's also the wig and scarf section at Christies also in the glass corridor too with lovely ladies who are really helpfully The make up sessions get booked up really quickly so have to be booked in advance ❤️xx Jane
Thank you yes maggies is amazing like grand designs xx
O & have a look at Suburbanturban... really lovely stuff XX
Thank u kindly x
Hi Zena,Christie in Manchester. I asked about a cold cap for my treatment of 18 weeks 6 treatments at 3 weekly intervals - carbo and taxol. I was told, from memory, that it wouldn't make any difference with my treatment. I then didn't start loosing my hair until into my 3rd treatment. I have a synthetic wig which they give free, with the fitter having her own hairdressing room. However, I haven't worn it yet although all say it looks great and it does look very natural; I do just prefer to wear a small headscarf.
Good luck. Gwen xx
Hi. The first time I loss my hair was dramatic.Not going to candy coat this.Second time handled it a bit better because I had awesome wigs that looked so real.Better than my original hair.Lots of compliments from people that did not know I was going through chemo.Now, I'm in second reocurence and I'm only on carbo, so will not lose my hair this time. I need the break,but I hope the drug alone works.If not, I will be back on taxol again.Once you get used to the wigs,it works..Of course we don't want to lose our hair again.When people say,but you have awesome wigs.Not the same..If I lose my hair again ,I was also thinking of the cold cap.I would think If you choose to do this ,that the hospital will do this for you.No question about it.Look into this more.I believe,especially,.if your paying for it.or even if it's free.I am so thinking of you,being your new here.Keep us posted.Good luck.Lynn👍💙💙
Aww thanks. I'm an innocent newbie and don't know much 🤷♀️😂
I rang the chemo room at christies they said they can only do it weekly and I'm on 3 weekly. Oh well wig it is. Xx
Zena I'm at the Christie and was offered it on weekly chemo but after taking advice from a few others decided against it. I've seen mixed results for ladies so thought I would skip it.
I've had 2 synthetic wigs now. They have a wig department on site that will look after you. You can pick up a voucher from the info desk along from the conservatory. Also if you go over to Maggies they will give you a free headscarf. This is my second total hair loss and I rarely bother with the wig. Scarves are so comfy and more gentle on my head. Your head will feel very tender for a few weeks so have headscarf to wear as wig can irritate it.
If you have long hair I would suggest getting it cut to a pixie style as it will give you time to adjust before it falls out. I've done that twice now and it was also easier for the kids to adapt.
If you haven't already would consider having eyebrows tattooed on. They were a game changer for me and so pleased I took the advice at the time. Have been getting them topped up for the last 3 years. I love them and no need to maintain. They frame your face and made me feel better about myself.
It is tough but you really do adapt. It grows back quick enough but if you've never had short hair definitely cut it to get used to it. Hugs xo
I was also talked out of using the cold cap, and it sits idle in the fab new chemo suite. Looks a bit like something from outer space lol. I would speak to Macmillan, as they usually arrange this with the oncology department for you.
I often wonder if it is because the staff do not want the extra work, yet our wellbeing and state of mind is really important.
Good luck
LA xx
I asked and tried cold cap (not private). Lost my hair anyway so it does not always work. Got 3 amazing wigs and still use them 6 months down the line. Hair growing back, curly and steel grey, not a good look but if dont have more chemo it is a small price to pay. Lots of luck
Check this out.
lovemeow.com
Chemo Takes Her Hair But Her Kitten Keeps Her Head Warm Every Night.
It's cool
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