Member
Posts: 6
Registered: ‎05-04-2017

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

Hi, I've had 4 of my 6 EC chemo cycles and have used the Paxman system. Like others I had my long thick hair cut ear length before it started which, although a wrench, I'm glad I did. It is painful and the first 10 to 15 minutes especially so. Also this pain seems to have increased as my hair has thinned and I too have gone down a size in caps. I estimate I've lost 50% but evenly so it's not obvious to those who don't know me. The condition is not good,very dry and brittle, and I may be overdoing the conditioner As my scalp is flakey or there's residual conditioner - not sure which. Is it worth it? It has been for me - have a wig tucked away in a cupboard which I can't bear to look at despite my partner and friend telling me it's fine. I've got this far so I'm going to continue. But I do wonder after all this is it actually better then to cut it off to allow the, hopefully good condition hair, afterwards to grow. If not I'll have soft hair near the scalp with my current fuzzy stuff at the end! 

Hope this is useful, Sue

Member
Posts: 6
Registered: ‎05-04-2017

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

Hi, I've had 4 of my 6 EC chemo cycles and have used the Paxman system. Like others I had my long thick hair cut ear length before it started which, although a wrench, I'm glad I did. It is painful and the first 10 to 15 minutes especially so. Also this pain seems to have increased as my hair has thinned and I too have gone down a size in caps. I estimate I've lost 50% but evenly so it's not obvious to those who don't know me. The condition is not good,very dry and brittle, and I may be overdoing the conditioner As my scalp is flakey or there's residual conditioner - not sure which. Is it worth it? I have a wig tucked away in a cupboard which I can't bear to look at despite my partner and friend telling me it's fine. I've got this far so I'm going to continue. But I do wonder after all this is it actually better then to cut it off to allow the,hopefully good condition hair, afterwards to grow. If not I'll have soft hair near the scalp with my current fuzzy stuff at the end! 

Hope this is useful, Sue

Member
Posts: 1
Registered: ‎20-06-2017

Re: did it help keep your hair?

I had 12 weeks of Taxol last year and I used Penguin Cold Caps. It worked very well for me - I would say I kept 90+% of my hair. Cold capping tends to work pretty well on weekly Taxol. I know it worked for me as I lost it EVERYWHERE else. It's a pain in the ass - it makes the chemo day long and it caused a lot of neck and shoulder pain in my case. But for me, it was well worth it. I did all of my normal activities and felt mostly fine. And after the 12 weeks, it was easy to move on. Hope that helps. Best of luck!

Community Champion
Posts: 1,572
Registered: ‎19-04-2017

Re: did it help keep your hair?

Cuteboy, I cold capped for my first FEC treatment and by day 19 I started shedding significantly and developing a thin patch on top. The cap was well administered and fitted.  It gives you 10minutes of brain freeze agony and then numbness which is easy to tolerate. I didn't cold cap again for my next 2 sessions as I personally felt it was too much pain for too little gain. I also decided I wanted to make sure the chemo gets into every cell in my body, especially since the lymph fluid runs under the scalp and I am lymph node positive. I had my 3rd FEC a couple of weeks ago and still have about 40% of my hair (I had it all shaved off after 2nd FEC which makes it easier to manage with a wig). Hope this helps. X

Member
Posts: 199
Registered: ‎16-03-2017

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

Thanks Anne I start tomorrow, dreading the pain but hope I can bear it. I will be following everyones advice x
Member
Posts: 1
Registered: ‎11-06-2017

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

I used the Paxman  1st one  March 2nd 2017  No 4  was  May 4th  I am having the operation  June 16th I found the cap  quite horrid  very  uncomfortable  and  gave  me  a splitting headache I have lost 30% of my hair. not sure if I need more chemo after operation .

Before using the paxman  I had  my hair  cut  from  shoulder length  to  just below chin length  which helped a lot  as my hair  was  heavy  and  thick . I  bought  shampoo and  conditioner  called Korres (  you can  buy  from amazon   ) expensive  but  worth it  . I found  the best  way  was to comb  my hair  gently  with  a large  shower comb ( wilko  £1) when it was dry .  when washing  dont  rub in  and the conditioner  I watered down just  pat it  gently  then rinse  off .  Pat with  a towel then drape this  over  your  shoulder  leave hair  to dry  naturally. I only wash my hair  twice  a week..  The outcome  is  a bit wild  looking  but  at least  I have  some left  . I woud use the cap again.  Hope this helps  anyone who  is like me  wanting  to keep their  hair  . There is no guarantee but  at least  I have  tried .. Good Luck  Anne x

Member
Posts: 20
Registered: ‎11-12-2016

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

Hi Riversidedawn,

Thanks for your previous advice.  I have had 3 rounds of FEC and 2 rounds of docetaxel,  so one left to go on 22nd June.  I have lost 80% of my hair despite using the paxman cold cap.  The nurses used gauze particularly on my crown and a blue scrub cap to prevent ice damage to my scalp.  I moved down from a medium cap to a small cap when I started docetaxel as I guess due to the hairloss it now fitted on.  I am spurred on to continue with the cold cap as there is a 6% risk of permanent alopecia with docetaxel,  but the head nurse at the chemo day unit was unsure whether I should continue.   I am definitely going to try to manage one more time if I can. I had abit of a headache by the end of the last session so I was relieved it was over, I am hoping in 2 weeks I will feel up to it.

 

I was wondering if there is advice on supplements that will help hair growth, the registrar mentioned zinc and selenium.

Any thoughts appreciated,  I too might ask about the tramadol if it doesn't make me too sleepy.

 

Community Champion
Posts: 779
Registered: ‎26-06-2016

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

[ Edited ]

Blue2 you can wash your hair as normal from now on. Don't colour it for at least 6 weeks after you last chemo.

I am getting my existing hair trimmed ever couple of months until my regrowth catches up. To disguise it I use a topper if I am going anywhere have a look here:

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

 

The best one for me is the Jon Renau Top Notch but it is expensive - worth it because I like myself far better when I am wearing it plus you don't have to pay VAT if you tell them you have had chemo.

 

This one is also good but cheaper:

http://www.internetwigs.com/toppers/medium-tp-top-piece-.html same thing with the VAT

Member
Posts: 199
Registered: ‎16-03-2017

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

Thanks for all Your help Smiley Happy I've downloaded the leaflet too cheers cx
Community Champion
Posts: 1,246
Registered: ‎24-11-2014

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

Hi melia

I did wash my hair as normal straight after chemo, I know some ladies have been told not to wash it on the same day - I didn't see this advice so washed in warm water as normal!

I lost may be 50% of pretty evenly all over my head. The majority came out after the first session - quite a lot all at the same time, after that it wasn't really much more than normally comes out when I wash it.

The top of my head was quite thin, so I adopted the comb over look and tied it up into a loose ponytail! The hair loss wasn't really noticeable to strangers.

I did put a soft fleece hat straight after chemo as it was so cold. Also wore hats whenever I went out as my chemo was November to April.

***** add to my list below *****
(sorry, it's finally starting to fade from my memory, 2 years on!)

Put cold cap on at room temperature and freeze it on your head (takes a little longer, but gives a better fit.)
Put gauze over any thin bits to avoid ice burns.
Have someone get it for you - Lots of warm drinks
Blanket for when your temperature drops.

**** Watch this space for updates! ****
Member
Posts: 199
Registered: ‎16-03-2017

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

Thank you riversdawn did you use cold water to wash it immediately? I think I might be scared to touch it straight after! How much hair loss did you have if you don't mind me asking? Did you wear a sleep cap or net for bed xx
Community Champion
Posts: 1,246
Registered: ‎24-11-2014

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

Hi Linda, please see my previous comments (sorry takes me ages to type on my phone!)

- See cancerhaircare website (stevenage)
- Don't use heat or pull wet hair
- use colour and perfume free products



Member
Posts: 2
Registered: ‎23-05-2017

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

Thank you riversidedawn Smiley Happy I took painkillers half way through this time which was better and I will ask about tramadol. Do you have any advice for afterwards? In terms of washing hair and the type of shampoo and conditioner - I was thinking of trying the paxman. Also, do you have any tips for styling hair without damaging it?

 

Thanks again x 

 

 

 

Community Champion
Posts: 1,246
Registered: ‎24-11-2014

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

Hi melia, take a look at cancerhaircare website for loads of tips.

I washed my hair immediately after each chemo (and weekly between 3 week fec) although I've read on here that some people have been advised against this.

I was very fortunate that I had a good result - I am hairy with very thick eyebrows which thinned but not disappeared during chemo!

I'd recommend a wide headband to protect your forehead and ears, lots of hot drinks, layers, hot water bottle, blanket, food, music / book / someone to talk to as it takes a long time. Also put cap on unfrozen then freeze it on your head for a better fit.

Good luck, I'm here if you need any Moore tips / talk x
Member
Posts: 199
Registered: ‎16-03-2017

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

Also when should I wash my hair as soon as I get home, or leave it a few hours or days? Should I use tepid water or cold as read so much different info x
Member
Posts: 199
Registered: ‎16-03-2017

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

Hi ladies im due to start treatment next week and cold capping. Im trying my best to think positive that im going to keep it but having total anxiety over it now. No one data suggest a wig to me as I'm so adamant im going to keep it. I think I'm prepared as I'll ever be, will pillow case, wooden comb, neutral shampoo etc but keep thinking I've forgot something important. Any additional tips please. Has anyone used a little cocunot oil to style hair just a little on the tips of my hair i was thinking to stop frizz. And should I be using a leave in conditioner after the cold caps over x
Member
Posts: 170
Registered: ‎07-02-2017

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

Thanks riversidedawn. I like the idea of scrunch drying my hair to disguise the short bits and having layers put in. I'm already getting a bit of a lift on my parting from the hair that I lost originally and has now started growing back.
In this hot weather, it's a nightmare only washing my hair once a week. I'm so anxious to move on from my cold capping routine but am going to stay with it for a few more weeks I think, just to be safe.
Community Champion
Posts: 1,246
Registered: ‎24-11-2014

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

Hi blue2, well done for getting to the end of chemo! I found that by the end of chemo I already had quite a bit of new growth. I've always had shoulder length hair all the same length but found my new natural layers looked good so after chemo I had it cut to a short bob with layers and it looked so much better. I was able to scrunch dry it which made it look even thicker.

It took me a long time to get confident to go back to my old hair care routine. I carried on using herbal essence naked range for a year and very little hair drying etc But I do think you can get back to normal quite quickly - I rather enjoyed my new speedy routine!!
Member
Posts: 170
Registered: ‎07-02-2017

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

I'm looking for some advice please......i had my last chemo last week, EC-T, and used the paxman cold cap, and want to know, when can I reclaim my hair?!!
I've got about 40% of it left after 5 months of treatment, its patchy and i have a few almost but not quite bald patches but have managed to get away without wearing a wig. I can use hair filler powder and a wide headband and look relatively OK. It's bob length at the moment.
I've been following all the cold capping hair advice - washing it just 1-2 x week on chemo with simple shampoo, once daily combing with a wide tooth comb etc etc, but wondered when I can start using proper shampoo and washing and combing it more often? I don't want to make a mistake right when I'm almost there and risk loosing it!
Also, when my new growth comes in, has anybody any tips on how to blend it into my pre treatment bob length hair as don't want to have to cut the remaining hair short and start from scratch. How do others manage the long bits and short bits?
Member
Posts: 225
Registered: ‎20-07-2016

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

[ Edited ]

I had my hair cut by a volunteer hairdresser at our local Hospice. My hair had been falling out all over while using the cold cap but as you say unless people knew - they wouldn't have known the difference.  I had really long wispy bits which looked a mess. As soon as it was trimmed up - it looked so much tidier and much thicker looking. If you feel you need a trim then go for it - it's the little things that make us feel better when going through treatment.

I had my last chemo in January and now my hair is starting to thicken up on top but thin on the ends - I had it trimmed by my hairdresser four weeks ago to neaten it up before I started my phased return to work. People have been amazed at well my hair has coped with all the cold capping and chemo - it may not work for everyone but it does grow back quickly - I'm so glad I stuck it out.