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Cold Cap - did it help keep your hair?

Community Champion

Re: Cold Cap - did it help keep your hair?

My hair loss was around the 13 day mark. Beware - the girlie bits may be the first to go! It was a bit of a shock for me! My head hair loss was quite dramatic for a few days. I didn't brush or comb it throughout chemo, just ran my hands through. There was quite a lot in one go, but then it stopped and any loss was not noticeable during the rest of chemo. By the time I started taxol I had new growth appearing. I kept my hair in a loose ponytail which helped to hide the lankness.
Member

Re: Cold Cap - did it help keep your hair?

My shedding seemed to be around day 14 and it was the odd hair not big clumps. When I washed and combed while ringlets would come out so say 30 strands together. I still have enough hair and wild curls to cover my head x
Member

Re: Cold Cap - did it help keep your hair?

I am on day 11 of my first fec cycle having used the paxman cold cap.  I followed the advice (used simple shampoo and conditioner) and have washed my hair twice so far & dried it with T shirt with minimal combing. I haven't had any hair loss yet; just wondered the likely pattern of hairloss.  I was worried that there would be clumps of hair coming out on my pillow at night.  Is this likely to happen or is it more general shedding?  I guess without new hair growth there will be cumulative thinning as a best case scenario.  I have very fine straight hair cut in a bob at present but it doesn't have much body.

Community Champion

Re: Cold Cap - did it help keep your hair?

I used paxman for 3 x fec and 11 x weekly taxol. If you need any specific tips or anything please let me know - I feel quite qualified !!
Member

Re: Cold Cap - did it help keep your hair?

Yes I have read the booklet from cancer hair care and the paxman leaflet and i feel alot better informed.   Thanks for great advice.

Community Champion

Re: Cold Cap - did it help keep your hair?

Amoyart, take a look at cancerhaircare website. They have loads of tips and advice.
Member

Re: Cold Cap - did it help keep your hair?

Anna bandana do.lots of little caps to sleep.in. I've done 6 x fec. I have to listen chin and back strap as it was making me feel sick but to compensate I do 2 hours post epirubicin. My hair is thinner but the mad curls cover that up at the moment. I'm not sure of how to style it going forward. I had it cut to a bob and blow.dried it once a week but that will now be too aggressive for hair. I'm thinking of shorter on the sides over my ears xx
Member

Re: Cold Cap - did it help keep your hair?

Hi i 'm on the other extreme and as i just started my 3 rounds of FEC75 yesterday which will be followed by 3 rounds of docetaxel.  I opted for scalp cooling and they have the paxman unit at the hospital.   I was abit concerned that the contact at the back wasn't as good and when taking it off the nurse commented that the strap was undone around the back, next time I will be more on the ball getting them to check it as I went to the loo and maybe things moved.   I had a medium cap with a small covering hat.  There wasn't much advice regarding haircare afterwards.   I was wondering where you can get the scalp caps to wear at nighttime to avoid finding clumps of hair on the pillow. 

I have found snail888 practical advice very useful; thankfully I rung the chemo ward so I knew to bring a headband for covering ears and forehead and I had brought some conditioner.  The nurse seemed to be under pressure yesterday and there needs to be attention to detail with cap fitting to get a good result.  It would be better if they could have done this in advance. 

I am not going to wash my hair for a few days, had it cut from long to a bob and fringe, it is v straight so I'm lucky it looks ok, there is dried conditioner from yesterday but going to leave it if doesn't become itchy.

Thanks for advice against wearing hats if possible as best to keep scalp cooler.

best wishes to everyone going through this.

Member

Re: Cold Cap - did it help keep your hair?

I just finished my last round of chemo (total of 4 treatments over 12 weeks: TC), using the Arctic Cold Cap system. I still have hair! I lost about 60%, and admittedly had a lot to lose given I had "big hair" - thick and lots of it.
Arctic has been very supportive, however, I learned lessons along the way that were not necessarily explicit from the onset, and wish I had known early on.

1. No hats. I live in a climate in the Pacific NW, in the US, that sees some cold temps in the winter (temps in teens, and in 20s-30s during our coldest stints) though mostly stays pretty temperate
(40s-50s). We had several cold snaps this winter and I wore hats for the first several weeks during treatment.

I stopped wearing hats after my Cold Cap support nurse (via phine) told me to stop and to actually expose my head to cold temps in between treatments. Hard to do on early morning walks for exercise in freezing temps, but I did it (with ear protectors/headband around forehead). Started this practice halfway through.

2. Also, some of the cold caps were defective, which we didn't realize until halfway through treatment. The were ripply and "bunched up" in the crown. As soon as we realized they wouldn't smooth out, no matter the tactics we tried when freezing, we contacted Arctic and they shipped replacement caps immediately. Unfortunately, we already went through 2 treatments at this point, so I do think the areas on my crown where I have the most thinning/baldness, is a result of that. We weren't getting enough contact there. Being so new to all of this, we just weren't on it quickly enough. Strategic comb overs do help - those and headbands. And, because I lost so much hair on my crown, I was worried about abscesses, and fort unduly had cut my hair to shoulder length prior to starting treatment, so we were able to bring that hair forward and place it on top of my head, under the hair net, to cover the bald spots during capping. I also used two hair nets to keep it all in place and cut down on the tearing and shredding of the hair net as you change caps every 20 minutes. On treatment days, I was in my caps for 10 hours.

I've been very strict about following all the protocols. Washing with clear, organic products twice a week, using an organic detangler each time I comb with a wide tooth comb, with some rinsing in between washes - all with as cool water as I can stand, just on my hair, in shower. I went from being able to hold a ponytail in my fist, to a tiny cluster between my thumb and pointer finger. But I still have hair, and if you didn't know me and what it looked like before, you really can't tell!

Hope this helps. Good luck to all of you!! Just celebrated last chemo yesterday. Stay strong and take care.
Community Champion

Re: Cold Cap - did it help keep your hair?

Keenchild - you can get one free on the NHS, ask your breast care nurse.
Community Champion

Re: Cold Cap - did it help keep your hair?

If you want to look a bit better with your thin hair I can recommend a topper. Just a wide hair  extension but so easy to put in 

 

http://www.internetwigs.com/toppers.html

 

 

I like the 731 best out of this lot.

 

Member

Re: Cold Cap - did it help keep your hair?

I also wrapped my hair in an old tshirt not a towel to protect it. I think that the finer your hair the better you fare because the blood supply isn't as good as on thick hair. X
Member

Re: Cold Cap - did it help keep your hair?

Hi PatriciaU

 

I cold capped and it seems to have reasonably successful. My hair is thin compared to how it used to be but people who see me say it looks OK. There is the odd bald or very thin patch but a bit of strategic combing over or moving the parting with a spritz of hairspray to hold it in place and it's job done. I can definitely feel the cold so woolley hats are a must for me in chilly UK. I also had my hair cut in a similar style to my wig  which was cut quite a bit shorter compared to its' usual shoulder length but it put a lot less stress and weight on my hair follicles.

I completed my chemo 17 days ago and still wear my sleep cap to protect my head. It's also useful for catching any hairs that do shed. Be warned even though you are cold capping you will still shed hair particularly 10-14 days or so after your first treatment.  

I did shed hair after each treatment but still washed it twice a week. I know they say only once a week but that was too little for me and in between times used a dry shampoo. (Batiste is one of the better ones in the UK)

I used baby shampoo in tepid/warm water and was very gentle with my hair. Air dry naturally as far as possible or cool setting on the hairdryer. Use a bamboo or wide toothed comb and hard though it is - try not to fiddle with your hair especially when its tingling/hurting like mad. I only wore my wig a couple of times and then only in desperation because I felt such a mess at times.

Cold capping does not work for everyone and some people can't cope with extended treatment times that using the cold cap brings. It is a struggle at times but hang in there. Good luck

Community Champion

Re: Cold Cap - did it help keep your hair?

I washed my hair once a week throughout, let it dry naturally or use a cool setting on your hair drier. I used a very soft scrunchie to put it in a loose bun - with an effective combover to hide the thinning scalp!
Member

Re: Cold Cap - did it help keep your hair?

Hi Patricia your best bet is to leave it alone and use a head scarf or fancy hat the more your message with it the more it will.fall.out.x
Member

Re: Cold Cap - did it help keep your hair?

Hi there,

 

I'm new to this group and thread.  I live in California and am having difficulty finding people that have  used caps.  I am  using penguin cold caps.  I had my 1st infustion on February 2nd.  How did those of you that  used the caps deal with the dirty hair?  It's making me crazy.  I typically wash my hair daily.  It's thin and gets oily quickly. 


How often did you cold rinse?  Cool/warm water wash?  Best styling? (loose bun?)

 

Thanks so much for ANY insight with this one!

Patricia

 

Member

Re: Cold Cap - did it help keep your hair?

I'm at the end of FEC cycle 3 (next three will be docetaxel and herceptin) and have used the cold cap throughout. Success is partial - had a wide band across the middle of my head where most hair is gone, and a patch at the back of my head. Need to wear a scarf at all times to hide those, but as fringe and hairline are unaffected, at least I still feel and look like myself, so I'd still say it's been well worth it. The hair loss occurred where the cap didn't fit tightly enough - my head is less domed than the cap.

Member

Re: Cold Cap - did it help keep your hair?

Thank you for the update regarding pax man. I've done 3 x fec and hair still looks OK very fine so shedding isn't that noticeable. Looking forward to trying regrowth shampoos. If head is dry try an overnight olive oil soak. Very soothing xx
Member

Re: Cold Cap - did it help keep your hair?

Well I have finished eight in total of fec-t and have a full head of hair it's three weeks just over after my last one and I've stopped shedding finally!!! Still have the flakiest head ever but am very grateful for a full head!!! I've got so much regrowth it's crazy!!! Mine was paxman and 100% worth it.... I wish you all the best of luck and every success with your treatment and cold capping xxx
Member

Re: Cold Cap - did it help keep your hair?

I am using Penguin Cold Caps. I am having success. I did lose hair after 2nd chemo. I shampooed my hair in the sink, with a thick shampoo, and my hair got tangled as I lifted my head up. Now I use a gentler shampoo, and I shampoo in the shower always.
Member

Re: Cold Cap - did it help keep your hair?

if it is grey coverage, use a crayon or powder temporary color at the roots. It fills in thinning too.
Member

Re: Cold Cap - did it help keep your hair?

Did you use them while cold capping? It seems they want very little stress on your hair.
Member

Re: Cold Cap - did it help keep your hair?

I am using Artic Cold cap.  The support is great and the kit comes well designed.  I think the key to success is practicing with your capper several times before the day of chemo to get the system down and timed well.

Member

Re: Cold Cap - did it help keep your hair?

I meant to say after washing I treat scalp to a biopic rub too x

Member

Re: Cold Cap - did it help keep your hair?

I have just had Fec 3 have used a pax man cap for all.of them

I take 2 paracetamol 30 minutes before, canulate then wet and add loads of conditioner to my hair to get a good seal with the cap. I also have a headband to protect my forehead. I then wear the cap for 30 minutes before the epirubicin which is the one that damages the hair the most.

Then I time 2 hours. I take a blanket and flask of tea.

I only wash my hair every 7 days,  I bought organic shampoo and conditioner with no phalates etc. I pat dry with a t shirt not a towel then sleep in a cap. I also bought really cheap satin pillow cases to stop any excess rubbing.

I have very fine naturally fair hair which I think has a poor blood supply. It's also really curly which is hiding the thinning patches

This picture was last week xx

20161219_215145.jpg

Community Champion

Re: Cold Cap - did it help keep your hair?

Hi DWM, there are lots of comments all over this site about makes and private hires. Does your hospital provide this service or do you have to hire? Mine used Paxman which have the cap attached to a fridge like cooling unit which maintains the temperature throughout treatment. I had great success with this and there are lots of positive reviews on here.

The other types (I think the ones you're suggesting) have several caps kept in the freezer and you have to swap them over every 20 mins or so. I believe that these were less effective as the temperature fluctuates and you rely on someone getting them out for you.

Cancerhaircare.com give very good online advice and tips.

Good luck, I really hope you find a system to suit you - hair loss is psychologically very stressful x
DWM
Member

Re: Cold Cap - did it help keep your hair?

Hello-I am about to start chemo and am considering the cold cap. I have found 2 that look like they have a successful outcome. One is from Penguin Cold Caps and the other is Polar Cold Caps. Would love any opinions on these 2 companies or if someone knows of another company they has success with. Thanks!

Member

Re: Cold Cap - did it help keep your hair?

Hi Flopsy, I just wondered how you were doing now after your op? Hope you are feeling so much better, I had my last chemo on the 1st November and really only just beginning to feel a little better so glad that parts done, start my radiotherapy on Monday the 28th so at least I will be all done for xmas then hopefully things can start getting back to some kind of normality! Lol xx

Community Champion

Re: Cold Cap - did it help keep your hair?

Lulabelle sounds like you're nearly there! I cold capped through 3x fec and 11x weekly paclitaxol. I only experi significant shedding after the first fec - huge handfuls and clumps fell out. After that it wasn't noticeable and like you by the time I'd finished I had a good couple of inches of new growth all over.
Member

Re: Cold Cap - did it help keep your hair?

Hi all,
Sorry I haven't been on for a while got crazy busy!!! I have now had four fec and so far two T's have two more left. I am shedding like mad on the docetaxol im losing handfuls when I wash it yet by go the grace of god have an overall coverage still. Praying it lasts the final two. My hair has grown throughout and there are tons of tiny hairs. My head is full of flajes though I'm using teatree and castor oil to ease it. Something that most cold cappers don't know you can have a sedative to take twenty mins before I now have this due to me being really sick for two chemos it wasn't the chemo but I had a nervous tummy every time I saw the cold cap I was sick but no longer and it doesn't hurt because I sleep through it now so perfect!!! You don't have to suffer through speak to your onchologist they can't refuse you if your in pain or it makes you ill.
I've used a wooden wide toothed comb from the body shop it is amazing well worth buying and take collagen and biotin most days I think this has helped with the hair growth I'd say it's grown maybe an inch or two since the start. I still have dread about my last two as I feel like I'm so close but I could still lose my hair. Does anyone know how long after chemo stops the shedding stops on adverage?
Thank you in advance Smiley Happy
Member

Re: Cold Cap - did it help keep your hair?

Thankyou ver much for your reply x

Community Champion

Re: Cold Cap - did it help keep your hair?

You can wash it now but still treat it very gently. I kept most of my hair and instead of a wig I have bought hair pieces which are fabulous they are called Easi-part and Easi-crown and this is what they are:

https://www.youtube.com/watch?v=zyy-XcFTdZs

 

 

I could not go to the shop because it was too far but I sent them a sample of my hair and they matched it.  I got them from here:

http://www.internetwigs.com/toppers.html#

 

If you can only afford one get the Easi-part because that covers the top, the sides and the back. The Easi-crown only does the back and to be honest if I had not bought both I would only get the Easi-part.

 

They clip in like hair extentions and nobody can tell you are wearing them.

 

This is the site that makes them but they are in the USA 

https://www.jonrenau.com/

Have a look because you might need a wider Easi-part just called Easi-part XL and the site give details of the base and how they sit on your head. The XL has a bigger base but see what you need.

 

 

Member

Re: Cold Cap - did it help keep your hair?

Hi everyone, I finished my chemo two weeks and just wondered when it was safe for me to wash my hair?

its driving me mad scalp really itchy and flaky I'm dying to wash it in snow nixoin shampoo but. Didn't know if I should wait a bit longer, haven't got much left and don't want anymore to fall out! Lol xx

LS2
Member

Re: Cold Cap - did it help keep your hair?

Hi All

I've been cold capping through 9 weeklies of Paclitaxol and have managed to keep about 60% of my hair.  I discovered my neighbourhood hairdresser was a bit of an expert on chemo-induced hairloss, and he recommended using Nioxin products throughout chemo, so I use shampoo, conditioner and scalp treatment (which is left in). However, he told me not to wash my hair more than once a week, to be very gentle (not massaging the scalp too much).  So far, this has worked reasonably well for me. I've used dry shampoo inbetween ,but resort to a chemo scarf or hat towards the end of each week, when I definitely suffer from bad hair days.

An expert (on cold capping) nurse in my oncology unit said it's very important to ensure a good tight fit -- good contact on the crown, top and sides -- and to make sure it's used for the appropriate timings according to the TYPE of chemo regimen you are on. It means the chin strap is quite tight!  For me on paclitaxol, timings were 30 minutes before, 1 hour during injection, and one hour after the chemo is finished.  She also said that the cold cap protects hair follicles from becoming damaged -- even if the hairs drop out, it helps it to grow back afterwards.

I've definitely lost more hair on the top of my head than the sides or back, but it doesn't look too bad for the 9 sessions I've been through. I'm just hoping against hope that the next 3 do not result in significant further shedding, and that it all starts growing back quicly after I finish!   It's definitely heartening to hang onto a bit of hair!  

Good luck to all of you.....  

LS2

Community Champion

Re: Cold Cap - did it help keep your hair?

I had my hair cut and coloured about 6 weeks after chemo and all was fine. Once you've finished chemo I think it's fine to use your normal hair products. During chemo you have to be careful of any reactions that could lead to infection. Take a long k at the advice on cancerhaircare website.
Community Champion

Re: Cold Cap - did it help keep your hair?

I am desperate to colour my hair but I emailed Paxman and they said to leave it alone for 6 weeks to 2 months after your last chemo. It is 5 weeks since my last one and i am still getting a bit of shedding.

Member

Re: Cold Cap - did it help keep your hair?

Hi everyone. All been well I am having my 6th and final fec tomorrow!! I have managed to keep a covering of hair and it's very thin but it's still hanging on in there! I am planning on using the nixoin shampoo and conditioner and I just wondered if any of you past cold clappers could tell me if it's ok to use thus straight away or should I continue with the simple regime for a while? I'm just desperate to start getting whats left of my old hair in better condition and for my new hair to start growing! Thankyou xx

Community Champion

Re: Cold Cap - did it help keep your hair?

I was referring to the Paxman which is a machine you plug into. I know that the Penguin system need to be frozen as individual caps, I had assumed that when the person mentioned a "machine" they meant the Paxman because anyone else would have said that a freezer was available.

 

 

Member

Re: Cold Cap - did it help keep your hair?

It is not true that you just plug the penguin cold caps in. They need to be frozen and changed every 15 to 25 minutes. Similar caps can be purchased on Amazon, the price will be 1/3 of the penguin caps. They will also be cheaper than the chem caps which actually purchase the ones on Amazon then rent them out(I believe that is a real disgrace. The so called machine is nothing more than a commercial freezer installed by the Rapunzel project. The freezer gets to -40 degrees, clearly colder than your home freezer, one the caps are fully frozen they are placed on the head for approximately 20 minutes, then replace with a new frozen cap, the other cap is placed back in the freezer. It takes about 2 hours for the cap to refreeze, so it is necessary to have a minimum of 6 caps ideally 8. The caps cost 80.00 each to purchase on Amazon. Free shipping, and still no tax in most states because the item comes from the marketplace. The whole thing will cost approximately 500, if the facility has no freezer you will need to factor in dry ice cost of 80.00 per treatment, as well as the cost of a cooler. The rental will be 600.00 a month, you will also have to pay for shipping both ways. For a minimal 4 treatment regimen the rental will be 2000 vs 500 to buy, dry ice will add at least 325 to the 4 treatment's. It will be necessary to have a helper at all treatment's as it will be impossible to successfully accomplish on your own.
Community Champion

Re: Cold Cap - did it help keep your hair?

Not only will it grow back quicker but you will be able to use toppers instead of wigs, you will see a photo of my hair after cold capping on another thread. Anyway "toppers" are just wider hair extentions but super easy to put in. I have one called easi crown:

https://www.youtube.com/watch?v=XwNRBnTPwGo

 

You have to have some hair for the clips to hold on to. My hair thinned on the crown but there are other toppers if your own hair thins anywhere else.

Member

Re: Cold Cap - did it help keep your hair?

Hi everyone, I am due my 6th and final fec next Tuesday!! I have managed to hold onto a covering of hair which I am very grateful for however I do now need to wear my wig when I go out, my question is does anyone know if it is better to wear a wig cap underneath or is it ok  just to put on over my hair? I don't want to do anything that will put any extra stress on my hair.

Also is it ok to start using nixion shampoo and conditioner after my chemo is finished or should I stick with the simple range I have been using.

Thankyou Lesley

Member

Re: Cold Cap - did it help keep your hair?

Hi Sue

havent seen you on the October thread and was wondering how,you are getting on?

i had my first chemo 8 days ago, have and a really rough week as I has an infection 2 days later and ended up back in hospital 😨

Just staring to feel like myself again, my daughter has been amazing. Nsue came to the chemo with me, I wasn't sure about it but the Macmillan nurse advised me to let her if she was sure.  Slightly worried now as I've just had her latest school progress check and her grades have come right down....

whilst my partner is being supportive he has a short fuse and doesn't seem to understand my need for calm... Good job we don't live together!!

hugs

Angie

xx

Member

Re: Cold Cap - did it help keep your hair?

I'm in Canada and just finished 8 cycles of chemo where I used cold caps.  No hospital here does that or have the machines, I was the one educating them.  I bought mine caps and all I needed was a cooler with dry ice, which was donated to me each time.  I did lose a lot of hair and because I dye it it looks crazy now, but I'm not bald and never wore a wig, baseball caps, but it sure helped me get through this.  You might need someone to help change the caps every 30 minutes and my nurses wouldn't do it.  

Good luck

 

https://www.elastogels.com/elasto-gel-cancer-care-cranial-helmet

 

Community Champion

Re: Cold Cap - did it help keep your hair?

Here is a link to Penguin cold caps which you can rent or buy if you are not in Europe:

https://penguincoldcaps.com/how-it-works/

No man power? All they do is plug it in! If they have the machine and the caps you can do it.

Member

Re: Cold Cap - did it help keep your hair?

HI. Does anyone know if it is possible to buy the cold cap. I have been told that my hospital has the machine but no man power to run it... so I am trying to buy caps. Any idea where I can get these? Mx
Member

Re: Cold Cap - did it help keep your hair?

Hi godiswithme
I am cold capping and so far it's working. Mine must be different to yours though as they are not changed every 20 mins. I'm presuming you're not in the UK?
I use the Paxman ones and they are on for 30 mins prior to treatment, during treatment and 90 mins after. I'm having EC. I haven't lost any hair to speak of. If I try, which I frequently do, I can probably pull 2 or 3 hairs out but no real shedding yet.
If you can tolerate them then there's no harm in trying. Yes it prolongs treatment time but for me that's not an issue. I'm just hoping mine continues to hang in there for the remaining sessions
Blueash is also cold capping and has had success too
Good luck
Sarah x
Member

Re: Cold Cap - did it help keep your hair?

Hi baysmom97,
I am curious did you continue with the cold caps? I am about to start chemo next thursday Oct. 27th.. I should be receiving my cold caps tomorrow via FedEx. I am really hoping they will work. Im a bit concerned because of the comments below with people saying they didnt work. Is everyone changing the caps every 20minutes? Thats what my instructions say. Sounds very encompassing but well worth it. Especially against Taxerene which has been on the tv. Any feedback on process of the cold caps?
Member

Re: Cold Cap - did it help keep your hair?

JoannaT,  I just finished 3 of 6 treatments that inlclude taxotere and herceptin.  I have cold capped each time, some shedding each time, seems that after the 2nd treatment was the worst, an alarming amount of shedding.  Now I have lost, I would say 50-60 percent of my hair.  It is shedding from the underneath and on the sides.  I have managed so far to keep it on the top, thru the cold caps and lots of prayer.  If I can keep what I have now, I will be satisified, 40 percent is better than none.  Cold Caps werent encouraged at the faciltiy I use in KY, they weren't familiar with them, which I found disturbing, but anyway, kudos to the UK for providing education and options for cancer patients!  Just wondered if anyone knows if/when the shedding stops?  I have heard is lessens after treamemtn 3, and then again I have heard it continues until after your last treatment? 

Member

Re: Cold Cap - did it help keep your hair?

I noticed I was going bald, I panicked and turned the internet upside down in search of a solution and tried lots of products and weird things but none worked. a friend who used  to tease me about the hair (in a bid to tease me further) bought a product from Africa during his travels and he mockingly gave me as a present.I tried it and the result is unbelievable. infact he had to call his contacts in Africa to get in touch with the manufacturers. I know how frustrating and confidence-sapping being bald is that's why I took this painstaking mission to reveal to any who wants to try it. you can contact the manufacturers on (abiomoigho@gmail.com)I hope this message helps.

Member

Re: Cold Cap - did it help keep your hair?

Hi Lorraine, I just had chemo no.5 on Tuesday and had the cold cap again, it was awful but only one more to go so am determined to see it through, I wasn't sure wether or not to bother with the bit of hair I have left but after asking others in this form others all said don't give up it will be worth it as hair will grow back much quicker xxxx