Hi Grace
I am starting EC This Thursday, and am currently planning to try the Paxman cold cap (if I don’t chicken out!).
Thanks for the advice everyone - will go armed with a flask!
Will let you know how I get on
Chris
I had the plain out of the freezer cold cap-they change it several times.My only problem is that I have a large head and they only come in one size,so they had to search for the stretched ones!
The oncologist assured me that I would lose my hair-it was great to see the look on her face when I went for my mid treatment check and I had most of my hair.I had to have it cut and styled because my hair had thinned out on top (because of the shape of the cap) I also kept my eyebrows.
I was told that it had worked well because it fitted tightly.
I finished my chemo in October and have had to have my hair cut since-it has also regrown very thickly.I used Weleda chamomile shampoo because your hair gets brittle and Body Shop leave in grapeseed hair sheen especially before you use the cold cap. Hope this is of use.Car
Car/Linda, bless you both for such specific information. I will most certainly give it a try & let you know how I go…Good luck to all at whatever stage you are at… G x
Hi Ladies
I was going to get my hair cut before the treatment started, I had been toying with the idea before diagnosis anyway, but decided just to leave it and see what happened. i had shoulder length thick quite coarse hair to begin with and knew that shorter hair would go a bit shaggy looking without the good old GHD’s to smooth and tame it so thought leaving it a bit longer I could always tie it back if it was a mess! I am glad I left it, although my roots are in shocking need of repair and you can see the grey coming through I am still glad to have it. it has grown I would say at least an inch and a quater and hasn’t really thinned at all.
Went to see my oncologist last week, it was the first time I had seen the actual consultant rather than one of her staff, and she was busy congratulating herself on recommending I try it! I told her that I hadn’t actually seen her before and that her said that it would only be a 50 - 50 chance of it working! She was very impressed with the results though.
It is an ordeal, I had my 5th one yesterday and the relief when it is removed is enormous, but I would still recomend it. I was told to use something like simple shampoo and conditioner and to wash once a week, but it left my hair like straw, so have been using the John Freida range ever since, still once a week, but was told as it was designed for daily use it would be ok, and its been fine, at least it feels a bit nicer and a but more normal! I also got PH balances stuff from the health food shop but that was pants too! I was advised to stay away from baby shampoo as its not balanced, but that seemed a bit double dutch to me!
I would say, give it a go, it i time consuming but worth it. You can always tell them to take it off if you really cant stand it, but at least you will have tried it
dena xx
Hi
I have the out of the freezer one - day 22 and still no loss at all, so keeping my fingers crossed. I got a very short hair cut and love it - everyone has told me I look 10 years younger (for now!). I kept pushing it down so it was in as close contact as possible - maybe that helped.
Good luck.
I’ve used the cold cap for two FEC sessions now, Although a lot has fallen out, I still have a reasonably good head of hair (it was quite thick start with).
On Day 22 it went bonkers and loads fell out for about 10 days and then slowed down. I have patches around my neckline, and I’ve got a thin patch on the top of my head, but they are all hideable. I just look like I have a really bad hair cut!
However, I am thinking of giving up the cold cap, but I’m not sure what to do!?
Reason one - I hate it! It feels like wedging your head in the freezer door for 3 hours, and last time I used I felt dizzy and got really cold, despite the nurses piling blankets on me. And the thought of another 12 hours under it makes me feel sick.
Reason two - lots of hair has fallen out. I find hair absolutely EVERYWHERE and most annoyingly in my dinner! It’s distressing to watch it slowly falling out, and not know if I will eventually end up with virtually no hair anyway despite using the dreaded cold cap.
Can anyone tell me when using the cold cap do you lose a similar about of hair each time? Or does it slow down?
If I lost a similar amount of hair each time, I think at some point there would be more on the floor than on my head and I would shave it off anyway!
Hi Pangapanga,
Oooh, thats a tricky one for you im afraid.
I suppose only time will tell whether its worth you perservering with the cold cap or not.
I remember how distressing it is when you see hair falling out everywhere (had chemo 4 years ago and lost all my hair day 17, have now had 3 sessions with cold cap and all hair intact) - and as you say, losing it slowly is almost worse and every day you just keeeping seeing hair everywhere and it prolongs the agony.
The cold cap doesnt work for everyone and not everyone feels the need to use it. If its causing you distress seeing your hair slowly fall out, and if using the cap on the day of chemo causes you pain, anxiety and distress (in your own words “I hate it!”)…then maybe the cap isnt right for you.
Its just a really difficult situation for you, because if you stop using it, then it will definately all come out. But if you carry on, theres is a chance you will be left with enough to feel happy with.
I know I havent answered your questions for you, just wanted you to know that I know what a difficult decision youre facing at the moment, and I really feel for you.
Whatever you decide, will be the right thing for you.
Good Luck,
Let me know what you decide to do!
K x
i have had two doses of epi and used the cold cap both times, still have a full head of hair but hair is slowly thinning finding hairs every where, on pillow ,in the sink and on my clothes,but while i still have my fringe i will carry on at least you can cover it with a hat-thank god for this cold weather.havnt washed it for a week,im usually an every other day girl and no straighteners ,roots are awful but im just glad im hanging on to it.got another 4 sessions to go and i dread to think what i will look like,its funny how it works for some people and not others.im not quite sure if it has worked for me yet.good luck tp every one else trying it jackie xxxxxxxxxxxx
Hi all
3 FEC with penguin cold cap and still have hair. A bit thinner and so grey at the roots but atleast its still mine. Asked about Tax and hair loss as due to start that in 2 weeks and told would probably be ok as some people experience hair growth with TAX. I do wish all these professionals would sing from the same hymn sheet as it gets mighty confusing who to listen to. We can only go on our own experience can’t we. Hair only washed once a week but I do use a dryer on it on a cold setting just to give it a bit of shape. Carr I will give the body shop leave in stuff a go as know what you mean about straw like barnet.
Good luck ladies and long may the bad hair days rein while we still have it.
elle x
I have just finished chemo on the 30th Dec was my last session. I had 4 sessions of FEC and 3 of taxotere. I have probably said before I used the cold cap and yes it was uncomfortable at times and I did make my decision session by session as to whether i was going to continue in the beginning. I started out with really thick hair which is now much thinner but in the main I am the only person who notices that. With the Fec I lost hair I could lightly pull handfuls out if I touched it and my hair brush often seemed very full, it fell out everywhere and even into my food, I was always picking it off my clothes but there was enough of it for me to continue. It did start to grow wagin with tax and I have some vey short hair amongs the shoulder lenght that is left. I am so pleased I continued using it, psychologically it was right for me - although I had reconcilled myself to going bald and decided not to wear a wig and bought some beauiful scarves. The Breast Care nurse told me in no uncertain terms it was not worth trying the cold cap as I would loose my hair but the sister onthe oncolgy ward asked me if I would try it. My thoughts were that I had nothing to loose and could change my mind - I am very grateful to Jane for encouraging me. I suffered alot during chemo and was often very sick - I don’t know if the cold cap contributes to this or not but I do know I would use it again. I was lucky it worked for me.
Hi,
I have my first chemo on Thursday 21st am having 3 FEC and 3 TAX. Still unsure about cold cap. I have very thin hair anyway and a small head. Have heard cap needs to be a tight fit and thinking with my small head its not gonna work. Also weighing up length of time you have to be at the hospital with cold cap vs not, do I want to be there for another couple of hours. Am I going to lose my hair anyway?? So many different stories…
Undecided
Anne xx
Hi Ladies…I had my first EC with Cold Cap yesterday.Its just the basic one straight out of the freezer & I have my doubts abouts its success but will certainly do the next couple of sessions to assess the outcome.I took advice from you guys & took a paracetomol half an hour before putting it on, nursing staff were not encouraging, indeed at one stage I thought the Conspiracy theory was alive & well.However the cap fit tight & I had next to no discomfort. I would advise anyone to take plenty of layers to keep yourself warm. Do not assume blankets will be provided!
It lengthened my treatment by only 30 mins (15 before & 15 after)so nothing to put me off. I have very thick hair, shoulder length, which I know has pros & cons, I can afford to lose some but the thickness might reduce the effect.
I’m now keeping my fingers crossed for the next 3 weeks, good luck to Anne (its really not an extra couple of hours)its worth a try!! And yes I was told that when I start Tax the hair would start to grow back…
Grace x
Please give it a go! The picture at the side is me after 5 FEC. However it did start coming out alot more after that and 6 weeks after last treatment is still coming out although new hair is growing! Although it is still below my shoulders and looks totally normal with a hat on. Very strange! The nurse i saw said not to bother, but SO pleased i did! Made me feel quite normal at times and think it was good for other people too. However, it is really not very pleasant and think i only stuck it cos i had to work on stage and couldn;t be bald! So well done to you for sticking it out, it is worth it really, keep going xxxx
I am on day 11 of second FEC and and still haven’t lost any noticeable amount of hair - I find a few stray ones in the bath and on the keypad, but probably no more than I would normally lose in a hairbrush (so short now haven’t brushed it for 5 weeks!). I’m sure it will start thinning soon - but the cold cap was worth it even if it buys me 3 extra weeks with hair. I am really shocked that a BCN would say not to bother - and also the 180 degree differing advice about tax.
One thing that I am curious about - if you manage to keep most of your hair, but the stuff you lose grows back differently - do you finish up with some really weird hybrid do?
Hi Finty
You have read my thoughts about new hair growth. Washed mine this morning so very aware of my thinning bits and was thinking how the hell will it look with all my little stubbly bits. Put a wash in Harmony colour on it last week as was going away for the weekend and wanted to look presentable. Its a bit difficult wearing a hat while having dinner in a posh hotel unless you are at a wedding. Have to say it was nerve racking as I kept waiting for it to start to sting and fall out but it never did, all went well and it blended in most of my grey. Result.
Starting TAX on Thursday so fingers crossed.
Elle x
Mmmm just wondered if any fellow cold cap users have any advice…Have long hair to my shoulders after chemo and then a very thin top of head and sides will a bit of long hair, so a real mish mash!! It has started growing back but not sure what to do as all different lengths. Usually wear hats all the time and you can’t tell, just can’t do that forever! Any advice, thanks xx
Hi,
I’ve already planned to have mine cut short in a few weeks. As the top pretty much disappeared completely, but still got a fringe and enough at the back,the top is regrowing pretty well and just one more FEC next week. I worked (b4 kids) as a hairdresser so I’ve been trimming mine every few weeks anyway to keep whats left tidy.
Are you thinking of going short Trumpet? or wanting to keep it longer, I wouldn’t suggest growing it any longer until new growth begins to catch up, maybe opt for a short bob of scraggy layer cut (which will incorporate the new hair as it grows!) Time for a new you!! Has anyone mentioned colours?? Mine is now dark brown- looks strange as I’ve always worn it blonder!
Hi All,
Trumpet - I think if I were you Id probably go a bit shorter - maybe to a graduated bob, or as slatch suggests, a scraggy bob (that sounds great!) Both styles would let you keep length at the front, and be shorter at the back and sides. Im halfway through 6 taxotere and had my hair cut yesterday (such a fab feeling, just going to the hairdressers!)- just having a trim has made it thicker and seems to have improved the texture and condidtion.
Keep us updated on what you decide - again, as Slatch has said - it maybe time for a new you!
K x
Ah, thanks for the advice, mmmm new me!! Well can’t get much worse than old one!. It’s just so thin on the crown that i can’t go out without a hat on at all. I just hope it starts to get a bit thicker! Like the idea of a scraggy layer bob!
I have had highlights for years and not been able to have them since this all started, may try a bit of home dye! Anyone braved the highlights yet, dont even trust my hair enough to use hairdryer yet? xx
hi Trumpet,
I meant to ask you if you’dd braved the hairdryer yet!! I’ve just got some knitted head bands from ebay. They’re very wide, enough to cover my sorry looking crown area and quite trendy too!! Lots of nice colours available. It’s just a case of doing the best with what we have left for a while. I’m hoping the weather doesn’t warm up too soon as i’ll look rather silly in my woolly beret!!!
Sarah xx