Chemotherapy and using a cold cap - Is it worth the effort?

[Murphy69]

I couldn't stick it . I knew I would hate evry session. Glad for those who can and did . I resigned to shaving my head now not that I think it will e a good look for me . Just gave to try hats and wigs xx

[hopalong]

Hi, thought I'd pop in to this thread again. Just had 4th EL, and still got plenty of hair on sides front and back but my comb over ability has gone as my top bald spot is getting larger. Can only now go out with people 5ft4 or less!!!!!. The nurse on Monday put a hospital surgeons hat on before the cold cap due to bald patch and couldn't feel any crown freezer burn. Am wearing wig more when I go out out if you know what I mean but don't worry if going to supermarket or out with my good friends. Keep capping girls. X

[msmcann]

Hi there,

You could also check out www.heathershair.co.uk who provide real hair weaves on a headband to be worn under a hat/scarf and they claim they can be dyed - maybe you could have your elusive red hair after all!!!! I got a full weave from them a couple of years ago and loved it. Didn't attempt to dye it though. They are a charity and other than the £2 p&p anything else is a donation and up to you. All the best. 

[Salsaroja]

Thank you Sheryl, Dawn and Hopalong... Its funny but I started my album on here as per Sheryls example 🙂 and realised after the first picture of me with my children that I feel a bit ashamed about being anxious... I realise that my hair has been a huge part of my self image, creativity and expression, and maybe I hid behind it too somewhat so its a big part of me BUT its only a part of who I am - those who love me will still love me - What is more important is that I am still here for my sons...

I also had a session today with Breast Cancer Care 'Headstrong' ladies, learning how to tie scarves, which hats suit me and different colours etc I feel lots better - I can also express myself in a different way - I highly recommend this for any others who are worried - I bought bright red and a red & white polka dot scarf too >>> I will rock the head scarves and hoopy earrings look at Salsa!!! 😄

Tomorrow I continue the search for the elusive RED WIG!!! Next week a bob haircut... Thank you all for posting... I am truly grateful - its been an emotional time for me but I have said my goodbyes to my hair now - If I manage to keep it then fab but I am ready x Karen x

[Sodastream]

Salsaroja I was lucky that my hairdresser had a couple of friends that had the cold cap so she advised me to have a one length short bob. It was great as like I said I went bald underneath at the nape of my neck but my bob covered it. Don't forget if you get bald patches and have dark hair use Bastille dry shampoo for dark brown hair as it covers up your pink scalp. I had to point out all my bald spots as my friends didn't notice unless they looked closely. Think I went through about 7 cans in total but a lot less money than some of these specialist products. X

[hopalong]

That's my problem. With it being short. Have enough length to comb over but then when encounter a gust of wind it all blows back to original place as nothing for it to cling on to. I think when I give my hair it's weekly wash on Saturday I will be a member of the friar tuck cold cap club.

[riversidedawn]

I'm with Sheryl on this, don't cut it really short. I've just gone to a bob mid between ear and shoulder - it means I've got enough for a comb over if necessary and can put it in a pony tail, I'm glad I didn't go for a short pixie style as there's not so much to play with to cover the scalp. x

[Salsaroja]

Thank you so much Sheryl - my gut instinct is to cut it off now and get used to the shock but after your post I will just have it cut short for now and I will start my own hair diary so to inspire others as you have done me 🙂
Really appreciate your post - Have a lovely day!
Karen x

[Sodastream]

Salsaroja I definitely recommend the cold cap and pleased to report it worked for me. I washed and blow dryed my hair everyday as I still wanted it to look good else what was the point of keeping it. It will still fall out and I lost a good handful everyday from day 20 on first cycle but its amazing how much hair you actually have. It slowed down by cycle 3 of FEC but accelerated again when I started doxetaxol and I continued to lose more after chemo had stopped. However the hair that had fallen out during FEC started to grow back during the doxetaxol. After chemo had finished I was left with straggly hair consisting of new short hair (quite a bit of it grey!!) and some longer hair still hanging on. I got my hairdresser to cut it all short and did wear a wig for 3 weeks until I'd got use to short hair. I dyed it using Daniel Field dye 7 weeks post last chemo and stopped wearing the wig and embraced my new short hair. Although I haven't been left with the hair I started with I have never been bald and never felt like a cancer patient. If you click on my profile you can see the pictures of my hair journey.
The big mistake some people make is they see they're losing lots of hair so think its not working and so stop using the cap. Keep with it and hoping it works for you too. Sheryl x

[Salsaroja]

Many thanks Hopalong, Dawn & Karen2609
I am all set to try the cold cap and chemo starts on 30th December - I have my paracetamol, headband, flask for my ice lollies, book etc etc ready 🙂 Anything else I will need please do let me know x Thanks in advance x

Since my last post I have been to an NHS wig supplier - discouraging/disheartening experience due to her distinct lack of interest - also wig makers dont cater for red heads much it seems & the wigs I was given to try on make you look like you are 90!!! Thus researched more wig suppliers and found some excellent ones just in case cold cap doesnt work for me - also bought some tube hats & scarves, made an appointment with Headstrong for advice re scalp care etc and my lovely hair dresser is going to cut my 20" hair up to my ears - its odd that I am faced with life n death, double mastectomy etc etc yet losing my hair has been the most traumatic bit for me to deal with... I guess its been such a huge part of my self identity and now I will just have to look a little deeper 😉 
Karen x

[riversidedawn]

That's great news Karen. My concern is my 12 weekly sessions of paitaxel in the new year and can I bear it weekly!

[Karen2609]

Hi, I cold capped throughout. Had my last chemo on 6 Nov and although I lost most of my hair from underneath at the back and it thinned at parting I still kept enough to be worthwhile. I found the hardest thing was that my hair looked a mess most days because it is naturally quite frizzy.
Since finishing chemo I've had it all cut short and it has thickened up a lot already. It doesn't work for everyone but my hospital having been having good results with it recently. Does add a lot of time onto your treatment but I would say it's worth it

[riversidedawn]

I'm coming into day 19 of FEC 2 and no hair loss this time, just thinning the first time round so definitely with it.

[hopalong]

Hi had my 3rd session yesterday and used cold cap again. Doing really well with hair at sides and back thin at front but I now have a bald spot on top of head. It's not too big and can
be covered with small bands of fabric and on Saturday I bought a headband from H&M. That will do the trick.
I've got a stretchy headband that I use to cover the back of neck ears and forehead under the cold cap, mine was £1.50 don't spend a fortune because the nurses are good with gauze to stop you getting freezer burn. Like others have said take some paracetamol before your appointment time to ease initial symptoms.

I think for me trying the cold cap has benefited as I am not sat thinking what if. Hope things go well x

[Salsaroja]

BIG thank you to you all for the replies... I really appreciate it and have been reading all the chemo tips and lists of what to take 🙂

Dee I am right behind you, starting on 30th December so fingers crossed - I will post back as well 😄

Today was my big results day, plan for treatment and dates...

Grade III - fast growing - 2 enlarged lymph nodes affected but no obvious spread from bones and CT scans 🙂
IHC: ER neg - PGR weak pos - HER2 neg but FISH tests showed a weak pos for HER2 - very relieved that i am not quite triple negative and have been offered Herceptin with the chemo :)))

Need heart echo-cardiograph and if that okay treatment starts 30th December at Clatterbridge using cold cap - if snowman head doesnt work I will have care transferred back to Royal again...

CHEMO (intravenous)
EC x 4 cycles
Rest - test
Docetaxel x 4 cycles + 4-5 cycles of Herceptin

Then 18 cycles of Herceptin (injection).

Genetic testing will be given
Lumpectomy/Mastectomy (depending on shrinkage results) and auxiliary node clearance or Level II auxiliary.
Possible radiography depending on results of chemo etc

Elective double mastectomy and recon agreed... *If genetics positive then double mastectomy and recon but if not then I will have to wait and have second mastectomy and recon at later date.

Tablets for 5 years

15-18 months later I WILL get my survivor T-shirt alongside **each and every one of you lovely ladies**
Thank you all again - I will keep popping back to find out how everyone is doing and report on my hair...

Karen x

[riversidedawn]

I've taken painkillers half hour before each time and think that helps. I use a head band to cover forehead and ears as they get cold, also hit drinks, lots of layers and a handy blanket. So far so good, but I'll report back next week after hair loss day!

[deedee540]

That should read F E C.sorry

[deedee540]

Hi all.Just had my first DEC this morning and used the cold cap.The first ten minutes were torture_ it felt like a lead weight on my head and neck and I got a headache straight away. Thought no way can I do this but after the initial ten minutes I was fine. It didn't feel heavy anymore and my headache went away by itself. All the way throughout my head did not even feel too cold - but the rest of my body was shivering. This might have been with nerves rather than the cold cap. Will definitely be using next time on New Years Eve ! Good luck if you try it. Dee xx

[waiting]

Hi Karen,

At my first  session I asked the nurse for her honest opinion about the cold cap as figured she sees women daily and would really know the success rate or not. I asked her if she would use it and she said definitely would as makes a difference to the rate at which hair is lost e.i  without it hair gone for most around second session.  With scalp cooling some women actually manage to hang on to enough hair not to cover up. For me it felt like the sensation you get when eating ice lolly. Laterally brain freeze for the first half hour but the remaining two I really thought were not so bad.But glad to get it off all the same.

Here's hoping we keep some no ALL of our locks xx

[Murphy69]

I been told it is worth it and secpveral people i know have kept their hair , mt breast cancer nurse recomend using a material head band on the fire head to protect the fore head from being so cold .i notice in ither threads they suck ice pops too to prevent sores and ulcers in mouth . Has any one done this with a cold cap and do you think it would be possible ? H xxx

[riversidedawn]

Good for you. It's tough, recommend you take painkillers half hour before and have hot water bottle, blankets. Layers ready as you get cold during it.

How about finances? Any help there?

[Salsaroja]

Perfect thank you - I am going to give it a go... fingers crossed!

Hope you keep holding onto your hair 🙂 Kx

[riversidedawn]

This is the link

 http://www.dailymail.co.uk/…/Why-aren-t-breast-cancer-patie…

 Good luck

x

[Salsaroja]

Thank you so much - appreciate your response Riversidedawn

*For anyone else wondering I found the following links:
1. http://forum.breastcancercare.org.uk/t5/Chemotherapy/EC-chemotherapy-and-hair-loss/m-p/902451#U90...
2. http://forum.breastcancercare.org.uk/t5/Chemotherapy/Cold-cap-eyebrows-and-eyelashes/m-p/909416#U909...
3. http://forum.breastcancercare.org.uk/t5/Chemotherapy/Cold-cap-eyebrows-and-eyelashes/m-p/909416#U909...

I have made an appointment at a recommended local wig shop, researched hats and hat making (will keep me busy) etc etc but stil not been able to find much about cold cap

Now to look at finances - thanks again
Karen x

[riversidedawn]

Hi Karen. Have a look at the November starters thread, Hopaling had posted a link to an article in the daily mail. I'm using it and others on that thread, we've had 2 chemo sessions so far and holding on to hair. I think it's worth a go - still got some thinning but at the moment it's not noticeable to those who don't know me.

Regarding money look at Macmillan website they have a leaflet on help with finances which depends on your personal situation

Good luck with your decisions x

[Salsaroja]

Hi I will be starting chemotherapy with Herceptin just after Christmas and have been offered 'Cold Cap' - sorry if I am repeating previous questions, but how effective is this? Also positives and negatives please as I have to travel to a hospital much further away, petrol costs...not working so money tight, extra travel time etc etc. All advice apreciated
Karen x