Cold Cap - did it help keep your hair?

[rosarty]

Hi Mishy

Just to say I am nearly two years on from Diagnosis now. Stage 3 advanced to nodes. have had a full mastectomy and received high dose FEC and radiation. I used the Paxman system (we live near where the company is based) I managed two cycles of FEC using the cold cap. I found it really tough and after the second cycle my hair came out in huge clumps. as I had masses of hair before it was very noticeable and distressing. At that point I decided to clipper off what was left (with my hairdresser- she was marvellous) and do scarves with funky hats. I was lucky as this was through the winter and I love wearing hats. It was the best thing I did and felt totally liberated. I completed the third cycle of FEC without using the cap.

My hair is now fully grown back. Thick and wavy as it used to be and I have it in a shoulder length bob.

I use an organic wash in hair dye that is very gentle and have the ends regularly trimmed.

It started to grow back straight away so I was never really completely bald. I'm convinced it was the cold capping that helped even though I had a lot of hair loss and only managed two cycles. I'm sure it helped protect the hair folicles and root growth area.

So keep persevering and dont worry if you don't manage all cycles with the cold cap. It will have helped.

Best wishes xx

[Mishy18]

That's brilliant I hope this one on Monday is fine I'm looking forward to having an easier time! Yeah I nearly gave in yesterday and got it all cut off but decided to hold off and have a bit of faith in my Barnet going to fill the rest of my good week in the garden and having a trip to the coast!
Yeah maybe it's better to avoid public transport if you can you should get someone to take you to maggies for a coffee it's really nice x
Hopefully the weather will fair up so I can do some gardening x

[feelthefear]

I'm also using the paxmam mishy. I invested in the paxmam shampoo and conditioner as well as apparently it stimulates hair growth. Whatever conditioner you're using they advise you only need a coin size worth combed through your damp hair.
Although, Kathryn has been lathering hers and is having great success. 😀
I really do think it's because your hair is so thick. After everything I've read I'd think the shedding will ease off for you soon. 🤞🤞🤞🤞
If you've got lovely thick hair, hopefully it should hide the loss.
I called sunderland hospital yesterday and they've added me to the look good waiting list. I just thought, if I'm having a dodgy day it's less for me to travel.
However, I almost feel like I'm tempting fate saying it, but this second dose has been even less nasty than the first (so far). I was doing some pretty heavy gardening by yesterday afternoon. Feeling extremely lucky, I really feel for those of us who it isn't being so gentle on. Maybe it'll be the T that knocks me out 😳
Angela x

[riversidedawn]

Keep positive about the cap ladies. I shed what seemed like masses of clumps after first fec and then no more! Combover and loose ponytail worked for me x

[Melia]

*your hair

[Melia]

No no don't shut up about your... we are all hair sisters! Seems that's all I'll talk about to anyone who will listen. Keep the faith mishy sounds like u havw plenty to lose mine is really fine but lots of it so looks thicker than it actually is. All I am doing is keeping permanently positive about keeping mine I try not to let it enter my head that it might go. It's the only thing I can manage to keep positive about. Angela my nurse is lovely was so patient and nice thank God. Maybe it's fate that I was in hospital this week as my usual nurse was on holiday. I really want her Every time as she makes sure it's the correct cap etc maybe another nurse wouldn't have xx

[Mishy18]

Yeah just to add the nurse tried a couple on me before she turned it on used the pax man, a man came in as I was finished and it was his third round and still had hair so I'm baffled! I'm hoping it's because my hair is really thick that it's normal to shed this much but it hasn't stopped since yesterday, I'm so gutted as I have put so much energy into keeping it! Washing it properly and everything mind they did say that my first fec was an aggressive dose so maybe but anyway I will shut up about my hair for now fingers crossed eh!!!

[Mishy18]

Hiya my daughter came with me anyone can use the centre if having treatment in north east you just ring them and make an appointment they are on a Monday every four weeks I just called in myself for a cuppa and asked if I could sign up for one, they have lots of different drop in things going on aswell as classes of yoga nd stuff! You and your family or friends can go it's lovely the staff are all lovely try it!
Yep thick hair thankfully cos its shedding like mad every time I move I shed just strands but constant, I hope it worked but I have a terrible feeling it's not going to stop I've been dredding this bit but I will plod on with it in hope it will stop after this one x if I get a bald patch anywhere visible and have to start some horrible comb over I will have to admit defeat and go for the shave......

[feelthefear]

I've been thinking the same about pulling out for a wig. I think I'll see how this week goes following
Yesterday's chemo. If mine thins at all you'll be able tell especially these days with not being able to use products or a hair dryer. I can't complain though. It seems our chemo nurses are really putting the effort in to get us a good fit with the cap. X

[Melia]

Sounds like were having very similar success im.having my mam wash my hair and she's saying she can see new hair growth! I would think the chemo wasn't working if I hadn't been so I'll! But I would honestly spend a week in hospital than lose my hair. Is it worth buying the wig I really don't think you will need it if you havw kept this much so far even if it thins a bit Now would it not still look ok. Xx

[feelthefear]

I feel for you Kathryn. We all hope for a smooth ride. Hopefully they can get on top of whatever has caused the problems this time round so next session in kinder to you.
I haven't lost at hair yet. Second session yesterday. In fact I'd say it's even grown. I didn't think I'd lost any from elsewhere either but hubby pointed out that I've definitely lost quite a lot (probably too much info). Really hoping I get through this week without a shed. Nurses said they were surprised I hadn't lost any yet and that this is usually a very good sign, so fingers crossed for us both. I've got another tribeca appointment next Tuesday to pick up my real hair long wig. Bit nervous about how much it's going to set me back but couldn't of coped with the short synthetic. I felt I looked ridiculous. It was an awful feeling. I had to fight back from the bottom lip wobble. Nothing else through this whole episode has made me actually cry.
I feel good today apart from period cramp and a bit of a flushed face, which I think I got last time round off the steriods. Temp is normal.
Hoping they'll have everything under control for you soon so you can get on with the next round. X

[Melia]

I've been meaning to sign up but hospital visits have got in the way of that. Angela my hair is still staying should have been due my second chemo today. Of course I'm delighted about it but completely baffled I haven't even had a shed I'm losing less hair than I usually do. Not complaining though! Maybe determination and stubbornness do pay off after all haha. How is yours doing?

I'm neutropenic... there were treating me for sepsis but can't find a source for infection. I came in feeling unwell and with a temp last Tuesday expecting be sent straight home and im still here:( they sent me home last Thursday but I was back in within 3 hours with same thing. So I think they are being ultra careful with me now and don't want to send me home to soon. Just waiting on bloods coming up so I can hopefully come home! So glad my hair is staying at that would have tipped me over the edge xx

[feelthefear]

Hi mishy.
My hair is thin anyway. I've moaned about it all of my life, but now it seems it might be helping me with the cap as it's tight to my head.
It would make sense that the thicker your hair is then maybe the cap wouldn't be as tight to your scalp? It should also be a lot less noticeable when you shed. It wouldn't take much shedding for me to be bald. 😳

How did you sign up for the look good session? The chemo nurses keep saying they'll get me the info but so far I haven't had anything.
Did you go alone or take someone with you? Not sure I want to get the metro on my own, but think I would rather go to the maggies centre than to my local one in Sunderland, as I've heard lovely things about the centre but nothing about sunderland's.

[Mishy18]

Well everyone still shedding I got a bed cap to help no clumps or bald spots thank God or it would be coming off know how you feel about the wig mind I haven't got one yet dredding the thought of one I still have alot bot quite a bit has shed thank God it's thick I will keep you posted on it though I hope it bloody worked!
Feeling alot better ready for another blast on Monday and yeah the look good thing was good you should sign up for it the maggies centre is lovely it's located in the Freeman hospital x

[feelthefear]

Hi JA48.
Hoping today goes well for you. It was a relief to get my first one out of the way early this month. It wasn't bad at all. Just a bit boring. I took plenty of snacks and water. Don't forget a 500 paracetamol about an hour before capping. The icy feeling will wear off after about 15 mins and you'll forget you're wearing a block of ice.

[JA48]

Thank you for all your posts ladies.  First chemo today,  will be using a cold cap,  it's so good to read about your experiences. 

[feelthefear]

Hi mishy.
When I had my second fec yesterday the nurse told me it was very unusual to have no shedding. She says when she usually applies the conditioner for cold cap there is always some hair on her hand. So hopefully that's all you'll get. Light shedding.
I can imagine how you feel though. I'm so paranoid about losing any.
I went to try on my short synthetic wig yesterday and was shocked at how emotional it made me feel. I just wanted to run away. I hated it. I then tried on a real hair, longer one and felt so so much better.
Looks like hubby will be paying at least 700 instead of 200. 😳And hopefully it will be a very big waste of money as I won't need it.
How are you baring up now?
And Kathryn, how is your hair doing and are you out of hospital yet? I hope it's nothing serious. X

[Melia]

Oh no well hopefully it's just a small shed! I bet that course cheered you up I've seen the good bags you get If your on Facebook you should come join us on there I think I might havw seen u mention it in the chemo starters group xx

[Mishy18]

Well girls I have started casting hair like a lab 😞 started yesterday not clumps just strands of hair I keep finding hair on my clothes or if I touch it, not enkuyto get out the clippers but enough to make me think oh no here we go is this it! Hopefully it's just a small shed!

Kathryn I feel OK this week first week was horrible SE sent me to hospital for a few days so knocked me of my feet a bit, the Onc has tweeked the red stuff for next one which is Monday so fingers crossed

Went to a look good feel good at Maggies yesterday was really nice met lots of nice ladies and got a lovely goodies bag of make-up and perfume all good stuff to bring home, you should definitely both sign up for one!

Hope you are better soon Melia and both of you keep well x

[Melia]

I haven't heard of shedding after round 2 either I hope I'm not an exception. I'm actually amazed with results so so grateful it's staying as think that would tip me over the edge at the minute. I've brought my hair net and silk pillowcase to hospital with me haha. I don't care how ridiculous i look as long as I keep my hair. My next chemo is delayed due to being in here. I hope they just tell me that I don't need anymore:/ wishful thinking xx

[feelthefear]

Yeah, five days in hospital doesn't sound good. Hope you're back on track Kathryn. Keeping your hair so far is excellent though. 🤞🤞🤞I've never heard of anyone staring to shed on round three.
Hi mishy. House move is a nightmare. We knew the house was bad when we bought it (worst house on best street we could afford). We're literally stripping it back to brick. I haven't got time to be ill so hoping round two is as kind to me as round one. How are you getting on? X

[Mishy18]

Well Melia that is great nearly round 3 and still your hair 🙂 sorry you have been in hospital I wasting my first week!! But glad we are all OK Kathryn How's the house move and good luck for round 2 x

[Melia]

That's great news, I lost body hair just before second cycle..ive been waiting for a big shed this second time round and still nothing. Im astounded.. I expect to wake up to handfuls on the pillow but the longer it's going on the more confident im feeling about keeping it. Glad yours is doing well too. Hope the move is going well xx

[feelthefear]

Hi Kathryn. I've been off the forum for a week as just moved into a new house (building site) so not much time on my hands.
Thought I'd check in today to see how you were doing with your hair and noticed your post to me.
I've not lost any (anywhere) yet.
I'm due my second fec tomorrow and have noticed some people don't start to lose any until after the second dose, so who knows what this week might bring.
Great that yours is still in tact. I'm obsessing over mine. It's been pretty hard not washing it daily while our new house is in such a state. Walls being knocked down etc. I'm starting to feel like swampy.
Angela. X

[Melia]

Hey that's great news mishy. I've done 2 cycles now was due my next one on Tuesday... but that's been delayed due to being in hospital for 5 days...but tagta another story 😕 my hair is staying firmly stick to my head so im delighted with results so far xx

[Mishy18]

Hi Melissa it's day 14 for me after first fec I could capped too and so far so good although I hear it's around now u start losing hair so I'm bracing myself! My down below has already Started! Probably too much info but I left it on purpose to see if that fell out too and it's already happening 🙂 so every cloud eh!!! I will keep you posted on hair on head situation!

[Melia]

Angela how are you getting on with the cold cap?.x

[riversidedawn]

Hi emilysmom, sorry to hear about your daughter. The hospital should have cold cap for you to use. They seem to keep quiet about it, probably because it takes much longer to give chemo than without it.

There are lots of different makes available. Some you have several caps which you freeeze then keep changing them every 20 mins. Most of us have used the Paxman one which is plugged into a portable freezer throughout chemo. You put the caxp on about half hour before and keep it on for an hour or so after.

My hair thinned all over, no bald patches.

Good luck. Hope it goes well x

[EmilysMom]

My daughter has stomach cancer and will be receiving epirubicin which will cause her to lose her hair.  She is just getting started on the chemo meds this next week.  Where do we obtain the cold caps?  I've not heard anything about them.

[Melia]

Digo that's fantastic.....nice to see a positive outcome from all of this. What treatment did u have? X

[Digo]

I've now completed my 6 chemo sessions and used cold cap throughout, I'm totally astounded with my hair, I actually can't believe how much I have, my hair isn't patchy or particularly thin, it was the Paxman that was used for me, hospital staff were tremendous and reassured me always. Anyone about to embark on their journey must choose for themselves but I'd recommend to give it a go👍🏼

[feelthefear]

Hi surrey girl. I thought I had to have both. So I've been wearing the horrible sweaty cap and soaking my lovely silk pillow case. I'm going to wash it today for the first time since cold cap on Tuesday. Can't wait. X

[Surreyhillsgirl]

Hi, I was recommended to get a silk pillowcase as it helps keep your hair & a side benefit is no face creases in the morning! Worked for me. Never wore a cap in bed x

[Melia]

Oh really hope I've not put too much on so as to stop the freezing happen. I think I actually put more on this time. I guess time will tell 😕 xx

[feelthefear]

Gateshead are just using the paxmam. I took my own paxmam conditioner and they said the paxmam owners daughter had been in and advised that you only need to use a really small amount of conditioner once the water is on. I've got quite thin hair though so doesn't take much to flatten it. And as it's going to well for you, I'd probably keep lathering it on. X

[Melia]

Yeah mine is the same, I haven't had ice on my head after either session I don't know if that's a good think or not bit I do out like nearly a half a tub of conditioner in my hair ha. They said they are using a new machine at my hospital and are having great success with it so filled with lots of hope. I found the second session worse than the first for some reason xx

[Melia]

And still no hair loss woop woop still got hair paranoia... hoping the cap was fitted as well as last time. I couldn't have the strap as tight as last time as it was making me feel sick but still had it fairly tight xx

[feelthefear]

Everything I read says expect a slump about day four or five? I was really surprised at how easy I found the cap. It was a bit uncomfortable for the first 15 mins, then at some points i actually thought the machine had stopped working. I was amazed to see ice on my head when I was over. I managed to eat through it though ( with difficulty) hoping it was tight enough. I was paranoid that there was a bubble at the back of my head where it wasn't touching. They kept reassuring me it was tight, but I still kept pushing it down. They left it on for 30 mins prior and 90 after. Is yours the same? X

[Melia]

And still no hair loss woop woop still got hair paranoia... hoping the cap was fitted as well as last time. I couldn't have the strap as tight as last time as it was making me feel sick but still had it fairly tight xx

[Melia]

Well we will be feeling pretty much the same I imagine... I was really tired yesterday but feel fine today and tomorrow I expect my steroid buzz haha. Be prepared u may slump physically and emotionally after the steroids stop. I did last time bit only lasted a few days. I am so hungry too, eat while u want too as much as u can as u may not fancy much later on in the week. How did u find the cap ? Xx

[feelthefear]

Thanks for the tip Kathryn. Unfortunately I'm not on Facebook. I closed it down a couple of years ago. First chemo went well. Felt like I'd been to a rave for a couple of hours this morning, but fine now. Soo hungry though. I'll have to keep an eye on that.
Hope yours went well. Things should be looking good for you if you haven't had any hair loss yet. 🤞🤞🤞

[Melia]

U couldn't wear the night cap as found it too hot also. Try a hair net instead I got mine off Amazon for a couple of pound and fits really well and is still on every morning. Are u on Facebook? Private message me your details and I'll add you to a lovely little group we have goinf for people just starting chemo. Made by a lady on here. How your first chemo went ok I had my second yesterday cx

[feelthefear]

P.s. Yes, I mentioned to him there was another lady off the forum due in later and that you were desperate to keep your lovely hair. He says he had six wig fittings that day. The man on reception says they're getting so busy with bc women it's almost worrying. 😳

[feelthefear]

Morning Kathryn.
I've ordered a wig from
Tribeca. He advised, because I've cut my hair so short it wouldn't be worth buying real hair as the synthetic will look just as authentic. So £200 instead of around 500 to 700.
If yours is still long, that's a lot to pull out for something you might not need. Here's hoping you'll keep it all, and if not that you'll keep enough that you won't be able to notice.
I had my first chemo yesterday and wore the bed cap thing last night. I woke up about 3am with it stuck to my head in sweat. 😳 Horrible. X

[Melia]

Angela how did your tribeca visit go, he mentioned he's had a lady in before me who's also cold capping... I said I know haha. My hairs still hanging on at the minute so I'm going to wait to buy one xx

[Surreyhillsgirl]

Hi Amanda, I'm so glad you found my experience helpful, it makes it so worthwhile using this forum! If you need any other tips/support do please let me know. Wishing you all the best in your treatment, and let me know how it goes. If you do need chemo remember it's zapping all those nasty cancer cells!!  🙂Take care xxx

[Amanda81965]

Hi Gill... Thank you so much for sharing your experience and tips which has given me hope if I have to have chemo. I am still waiting to hear as I was only diagnosed last Thursday and have been told that I will have a lumpectomy and radiation initially but then dependant on other tests such as my HER2 results they will br able to establish other treatment for me.... dreading chemo as I don't want to lose my long hair (down to my mid back). I hope yours continues to work and that you make a full recovery Gill, take great care of yourself- Amanda xxxx

[feelthefear]

Haha. I feel like bleeping all of the time
Kathryn. Obviously im having fec-me instead of fec-t. 😳
Hoping tribeca does wonders for us without clearing out the bank balance. 🤞🤞

[Melia]

Forgot you can't swear on here.... shame haha. The word bleeped out Is sh*t