Cold cap.

[Suzanne333]

With the inevitable chemo looming again, has anyone any thoughts, experience etc on cold caps? I can't stand the thought of losing my hair again- not that I've got loads.

Thank you lovely ladies. Xxx

[rppizio]

Suzanne, hate to hear this for you. I have heard about 50/50 on the cold caps, for the ones that have had good success they love it and for the ones that didn't, not so much,lol. Will you be having the same type of Chemo or different? It is my understanding that not all chemo causes hair loss. Please remember your beauty is more than your hair.

[Suzanne333 in reply to rppizio]

Hi.

I will be having the same chemo. Carbo and taxol. I would like to hang onto my hair if I could. I could always get a funky wig too. I've heard the cold caps are quite painful. I might try it and see how I go.

I hope you are ok. Xxxx

[Purple-iris]

Hi Suzanne

I used cold cap successfully and although my hair thinned ( was very thick) I kept most of it.

First 15 mins are the worse while it gets to temp but then got used to it for the other 6 hours ! I found the chin strap the worst as has to be tight . I would use it again but I know not everyone can tolerate it . May be worth a try to see how you get on . But if not , there are some great looking wigs available. I had / have one on standby .

Love Kim x

[Suzanne333 in reply to Purple-iris]

Hi Kim.

I think I will try the cold cap. Do you only wear it when you have chemo. Do you wear it in bed or around the house? I will see how I get in with it. I'd like to try and keep my hair this time around. If not I will shave it off. Just seems to take so long to grow.

I hope you are ok. Xxxx

[Purple-iris in reply to Suzanne333]

Hi

Only during the chemo 😀 does make it a little longer treatment. They normally put it on during premeds , wet hair thoroughly and apply conditioner . Needs to be on 1hr before paclitaxel , ( had for 3 hours which affects hair ) and an hour after so you keep it on when they start the carboplatin ( 1 hr ) . You then need to keep it on for 30 mins with freezer unit turned off to defrost !!! before removing .

Then you have wet and sticky hair to towel dry !! lol

I am good thanks at coast for weekend with family , hoping stays dry , restocked the Pimms and Presecco and trying to forget my achy back ! and scan results .

Try and have a good weekend and try to forget about the chemo until you have a start date .

Love Kim x👍💜

[Petrolhead]

Hi Suzanne

I tried it for a couple of sessions but my head was not the ideal shape! I have a head which is flat on top so the cap did not make good contact with it. They tried to pull the chin strap tighter but it about cut my jaw off so I gave up. You have to wear it before chemo,, during chemo and for an hour after. You look like an alien as you have the cap on , then the coolant cap which has a tube running from the cap to the coolant machine. There is the connection to the electric as well. My other half took a photo of me with it on- I will try and find it and post the picture. The leaflet I was give stated that it worked for about 50% of people and if you kept more than half your hair it was considered a success. Some ladies find hair thins but they do not lose it. Definitely give it a go.

Regards Fay

[Beckyjh]

Hi Suzanne. I have used the cold cap for original chemo and recurrence this year. Did not lose my hair at al although did go thin on top. As the other ladies have said first 15 minutes are the worst but I took paracetamol beforehand to take the edge off. You smother your hair in conditioner beforehand and then I didn't touch it for 2/3 days afterwards - wore scarves to disguise how awful it looked!! Satin/silk pillowcases don't pull on your hair so much either! Good luck xx

[SarahsJourney]

Hi Suzanne, I successfully used the cold cap. I had weekly paclitaxel rather than 3-weekly so not sure if this made a difference, as the dose was lower. My husband made sure cap was on really snug & tight. I took a co-codamol about 30 mins before and then his job was to distract me for the first 15 mins. I'd highly recommend to anyone to try it if it's an option. For me, mentally it made a whole world of difference. I have plenty of pics wearing the cold cap but don't think I can add a photo in a 'reply'

I also didn't wash my hair/style it much. Used to just wear a beanie home from the hospital & prob only washed it twice a week. I think I've been very lucky as to look at me now you'd never know what I've been through. Double-edged sword sometimes, but the best option for me personally. Oh...if it helps, I have fairly fine hair, and it did thin out a bit but no bald patches.

Good luck!!

Sarah xxx

[Suzanne333 in reply to SarahsJourney]

Hi Sarah.

Thank you for your reply. I saw the pic. I was wondering too whether it's advised or makes a difference if the chemo is every three weeks. I will have to ask nearer the time. I would like to keep my hair this time. I know it's only hair but being bald or wearing bandanas just shouts out cancer.

I hope everything is ok with you Sarah. Xxx

[SarahsJourney]

Suzanne, just posted a pic as a new post. Hope it helps 😘

[Cath63]

Hi Suzanne I've been using the cold cap , I've just finished my 2nd dose yesterday and 4 still to go . I've got thick shoulder length hair and so far I've shed quite a bit prob 30% of my hair , I was told that it's because of the 3 hr infusion of the taxol that causes it , the nurse said breast cancer patients get a much better result because they only receive 1hr of the taxol , but to be fair my hair is only shedding its not coming out in clumps and I've not got any bauld patches yet , I've been in contact with a lovely young girl going through the same as myself and she's used the cold cap and explained from start to finish to edge me on not to give up , the shedding gets less with every treatment , so I suppose it's a matter of choice how much you want to be left with , I just feel if I'm left with enough hair that I can put up and disguise the thinning with toppiks hair thickening powder , it's great works really well .

I'm determined not to give up unless it comes to the pointless stage , because I know what works for 1 might not work for another , at least I can say I tried,

The hospital I attend uses the dignicap , and it is really cold to start with but you do get accustomed to it and I dont find it too uncomfortable , only down side it does add on a good bit of extra time to your treatment , hope this info helps you best of luck with your treatment

Cathy xxx

[Suzanne333 in reply to Cath63]

Hi Cathy

Thank you for your reply and the info.

I will be having the same regime of chemo which will be every three weeks so yes I'll have more chemo and longer sessions. I think I will give it a go. See what happens. If it comes out too much I can shave it off again.

I think I have a few months before I'll be back on chemo. Nothing shows in my scan and my CA125 is 113. Not a massive number but they've said I will be getting chemo again as my xancer is coming back.

I e booked to see a top oncologist at my hospital week after next to see if she can give me more reassuring news.

I hope you are ok and doing well. Xxxxxx

[Cath63 in reply to Suzanne333]

Hi Suzanne your results sound good so try and not worry , wait and see what your specialist says , and yeah definetly give the cap a try , don't give up too soon with it even when your hair does start to shed , remember you've got millions of hair , you'll know yourself once it starts coming out , I've put all mine in a bag and it looks loads but still got plenty left , my daughters think I'm crazy but I just want an idea of what I'm loosing , I've got a wig for back up and bought loads of scarves .

Hope everything goes well for you if and when you do need to start treatment and feel free to messsge me .

Take care

Cathy xxx

[Suzanne333 in reply to Cath63]

Hi Cathy and thank you.

I will try and persevere with the cap. I know when I lost my hair before it seemed like loads came out but there was still quite a lot left like you say. Then eventually it did start tumbling out. I had to shave it off. It hurt too.

I'm so worried about this recurrence. When I woke this morning I kind of wish I hadn't woken up. I just keep thinking what's the point. I guess I'm just getting a bit depressed. I'm sure I'll soon come to terms with it. I just need some hope and positivity. Like we all do. It's so bloody hard what we deal with.

I feel totally deflated. I'll perk up though. Got to be strong.

Sorry for waffling on.

I hope you are ok. Xxxx

[Cath63 in reply to Suzanne333]

It's a horrible disease Suzanne but try and stay positive , your not alone , that's what I always say to myself , and there's new drugs coming out all the time , hopefully one day it'll be the real one that we all pray for , and your certainly not waffling on , it's good to talk and get it off your chest , what I always think is im here , I'm alive , I'm living , and more so on my good days I'll go out and just enjoy myself .

Always remember your not alone stay strong !

Sending you a big hug xxx

[Suzanne333 in reply to Cath63]

Thank you for your lovely kind words Cath.

I will be ok. I'll be back to myself soon.

It doesn't help that my other half was made redundant three weeks ago. He's very low. I'm trying to be positive for him.

We are trying to be careful with money so aren't going out.

Things can only get better. 👍🏻👍🏻Xxxx

[Cath63 in reply to Suzanne333]

Know the feeling , I've been off work now since 22nd may and my oncologist has said because I work with the public I can't even think about going back until 2 month after I finish treatment , so prob Feb. It's hard we're the exact same this is when you wish you'd put a bit away for a rainy day . But I'm afraid I like to spend 😂, I'm not worrying we'll get there and you will too,

The bills can wait .

Take care

Cathy xx

[ZenaJ]

I used it and lost very little hair from my head. You can't wash, blow dry or dye your hair when using it. The cap has to be very tight on your head because if it doesn't touch the scalp it won't work.

I had it on for up to eight hours every week as you have to wear it before you start and when you finish your days chemo. It can be very uncomfortable for the first few minutes but if you can persevere with that it's fine for the rest of the time.

You can try it and see how you get on. There's no shame if you can't cope with it as everyone has a different pain threshold.

As from what you're saying you haven't got thick hair (neither have I) it has a better chance of working. Doesn't matter how long your hair is as it only works at the root level anyway.

Good luck with it. Zena x

[Suzanne333 in reply to ZenaJ]

Hi Zena. Thank you for your reply.

I think when I start chemo again I will try it. I'll see how I get on. I'd like to keep my hair. It's just growing back since January so it's short but looks ok.

I hope everything is good with you. Xxx

[ZenaJ in reply to Suzanne333]

Thanks Suzanne,

Yes luckily I'm four years down the line now. I have/had Stage 3C. I've been very lucky.

It's worth giving it a go, as you say it takes so long to grow back. It gives you the opportunity to try new styles though if it does fall out. I did have a wig on standby in case it didn't work but luckily, it did. Also, my oncologist told me several times that I would definitely lose my hair. Showed him, didn't it? lol.

Good luck and best wishes, Zena x

[Suzanne333 in reply to ZenaJ]

Hi Zena. You are doing well. I'm stage 3c too. BRCA2 positive also.

I'm glad you are ok. It gives me hope when I hear positive stories. Xxxx

[ZenaJ in reply to Suzanne333]

Thanks Suzanne,

And by the look of you you're years younger than me so you have a great chance. xx

[Zena41 in reply to ZenaJ]

Hi zena we're do you get it from ?

Xx

[ZenaJ in reply to Zena41]

I got my wig from the hospital. They're free. You can choose from loads. I had one as near to my own hair as I could get because I wanted people to think it was my own hair.

If you meant the cold cap. The hospital have them. They're in different sizes so make sure you get a snug fit. There's a large refrigeration unit attached with a hose to the back of the cap. It looks like a bicycle helmet when you're wearing it. You detach the hose from the unit when you go to the loo and reattach when you come back. Some allow two people to be connected to the same unit but I had a single one.

I felt very cold all the time. I don't drink tea of coffee to warm me up so I took extra cardies and a blanket. I even wore my fur lined boots.

Let me know how you get on. Zena xx

[Zena41 in reply to ZenaJ]

Kool. Do you have to ask for a cold cap ? X

[ZenaJ in reply to Zena41]

I asked and there wasn't a problem. You have to wait for the drugs anyway so they can get on with the fitting while you wait.

I heard a couple of nasty comments from others in the chemo unit, not directly to me but to the person next to them. Why bother, that sort of thing. I think they should keep their views to themselves. It was from men whose hair was so short it would have regrown in a couple of weeks. I chose to ignore them.

I came across a few negative people during my treatment who could have upset others that are not too strong but it takes all sorts. Luckily, most of us are positive and support each other. xx

[Zena41 in reply to ZenaJ]

Exactly no time for negativity!

You have to do what's right for you...

I am going to ask and give it a try and if if it's not for me I have a wig and hat xxx

[ZenaJ in reply to Zena41]

And you'll look lovely whatever happens x

[Zena41 in reply to ZenaJ]

Thank you. All zena r lovely 💪

[Suzanne333]

Aww thank you. I don't think I'm years younger than you. I'm 51. Probably look younger in the pic when I had hair. That was last year.

Xxxxx

[Cath63 in reply to Suzanne333]

Lol I'm 54 and you certainly don't look 51 . Xx

[ZenaJ in reply to Suzanne333]

Looking good. I'm 65 but if you're not too close I might look younger. ha. ha xx

[Suzanne333]

I feel about 91. Lol. Xxx

[Nicky100]

Hi my dear. Sorry to hear you are facing this again and I wish you a speedy route through it all. It's horrible isn't it?

I tried the cold cap and it was worth a go. I lost a bit of my hair so in the end I shaved it off (on my first chemo). That said I have read that it can really work for some people!

It was cold at first but don't listen to scary nurses stories about your head freezing! It was not that bad and I managed 5 hours of it!!

One thing I would say is make sure it fits properly! I think the one I tried was a little big, and you need to have it tight against your skull for it to work!!

Good luck and I would give it a go! You have nothing to lose by trying xxxx Nicky

[Suzanne333 in reply to Nicky100]

Hi Nicky.

Thank you for your reply. I will give it a go. I've nothing to lose (only hair)

I will see how I get on. I'd like to keep my hair this time around.

I hope everything is ok with you. Xxx

[Nicky100 in reply to Suzanne333]

I am OK thanks. Approaching halfway through my 2nd chemo.

Good luck and let me know how you get on as I would be interested to know xx

[Suzanne333]

I hope your chemo is going well.

I will let you know what the oncologist says.

Take care and thank you. Xxx

[Lynn_B]

I totally get you wanting to save your hair.I had taxol/carbo when diagnosed.Lost my hair. My first reocurence I had the same treatment. Devastated to lose hair a second time.I am now 2nd reoccurance and I am only taking carbo,so will not lose hair.Yes!.They are saving taxol for another time.I was thrilled to not lose hair this time. I also asked about the cold cap incase I was going to lose hair again.I think I would try it next time.Good luck with your treatment and hoping the cold cap works.Keep us posted.Lynn💙💙

[Suzanne333 in reply to Lynn_B]

Hi Lynn.

I'm going to try it. I really dont. want to lose my hair again. I want to look normal. I'm just hoping the chemo will be bearable again. I coped with it well the first time.

I hope you are getting on ok. Xxxx

[Neona57]

The cold cap didn't fit me very well and the hair on top of my head became very thin. I read a post from one lady who said her nurse had packed the cap with gauze to get a better fit. I thought the discomfort only lasted a few minutes and was worst the first time when I didn't know what to expect. Paracetamol half an hour before helped. I was so glad to have kept my hair -it was really worth it.

[Suzanne333 in reply to Neona57]

Hi.

Thank you for your reply. I am going to try it. I will take a paracetamol too.

Thank you for the tip. Xxx

[Hertsmum]

Hi Suzanne, just wanted to say I'm sorry to hear your news, know it is a crushing blow to hear. You just can't believe this is happening again, it seems so unfair after all you've already gone through doesn't it? My recurrence was 9 months after end of first line and like you I'd hoped for so much longer!

However that was nearly 2 years ago and whilst I can't tell you I've had a long remission since then, I have found the treatments I've had tolerable and had some wonderful times along with the more difficult days.

Anyway, I did use the cold cap both on first line and subsequent course of taxol, it worked very well both times and hardly lost any hair. The only thing is it may be a very long time to keep it on if you are having 3 weekly - I was on weekly taxol. You can give it a go anyway, so you know you have tried it. Hope you can manage to put it in its box for a while for now and make the most of treatment free time, I know it is hard not to think about it but hope with yoga and doing things you enjoy that will help.

Wishing you all the very best, love

Madeline Xx

[Suzanne333]

Hi Madeline.

Thank you for your reply.

It is devastating. I just went to pieces. It just made me realise that this is how my life is going to be.

I feel fine. I've no symptoms so I hope they hold off treatment for as long as possible.

I asked if I'd be having weekly or three weekly chemo. They said it would be three weekly again. Which means a long day in the chemo unit.

I'm sorry you too have had a recurrence. I knew it was highly likely, if not inevitable but thought somehow I wouldcrecur years rather than months later.

I hope you are doing ok and keeping well.

Thank you again for your reply. Xxxx

[Jo2305]

Hi Suzanne

I have just finished weekly taxol (18 sessions) and used cold cap as like you couldn't stand the thought of losing my hair. I didn't lose a strand! 😊 I even had it coloured and I washed it as usual as thought there's no point in having hair and it looking crap. I bought a wig and thankfully didn't need it, the nurses couldn't believe it! It isn't pleasant but totally worth it and I would do it again. Persevere as it gets easier each treatment, I think our bodies actually aclimatise to it after a while to a degree. I think it does have different effects for different people and did see a couple of women with thinning hair but give it a go for sure! Good luck with it xxx 😘

[Suzanne333 in reply to Jo2305]

Hi jo.

Thank you for your message. I'm hoping when I go back on chemo that I will have it weekly as it seems the cold cap works better with a lesser dose.

I will certainly try it as would really like to keep my hair.

Thank you for giving me that info. I'm glad you kept your hair. It kind of keeps our identity and we don't look ill.

Hoping you are ok.

Hugs. Suzanne xxxx