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Cold caps

loopy68
Member

Re: Cold caps

Hi Girls

I just thought i'd share my experience of the Paxman coldcap with you as i've done my chemo now.

I had 4 EC and 4 Taxol and used the cold cap throughout.I was told that everyone loses their hair even with the coldcap when they have Taxol - I proved them wrong and they were amazed! My best advice is to get it cut short, if you have long hair. I lost hair on the crown of my hair but just wore a beret and in fact still do as it's so short still. That said, I never really looked like a cancer victim which was what I wanted to avoid!

Please please please don't mess with your hair if you're using the cold cap. Wash it only once a week - dont brush it - I used Simple shampoo and conditioner. The less you mess with your hair the better.

If you can stand it, give it a try girls - I'd not hesitate to recommend it!

Love Loopy xx

grace59
Member

Re: Cold caps

Hi all... I'm on Day 13 of EC & trying not to panic. The Cold Cap gave me no problems to use but I really dont know whether its working...I'm losing a lot in my comb & yes moulting all over the show but no huge clumps as yet! The condition is dreadful & I'm desperately nurturing it with Botanics shampoo & kind conditioners. I empathise with those who use colors, I'm normally full head blonde & have had lowlights to try to disguise grey roots. I've been told not to use any colors while I'm having chemo but if it does hold (big if) I might try that Harmony rinse!!!!I feel a mess.....Good luck to all trying the frozen head thing...G x

KatieFizz
Member

Re: Cold caps

Chris - good luck for Thursday and whatever you decide to do about using the cold cap again or not - its not an easy decision for you, but what ever you decide will be the right thing!

K x

Chris5555
Member

Re: Cold caps

Thanks everyone

angels/finty - I am not as disciplined as you - find it difficult not to fiddle with my hair. My hair is short anyway, so it can't be pulling - feeling very impatient with it today - even the cat is glaring at me for malting on her!

What I really need is a crystal ball - if I knew that it was all going to go I could avoid the cold cap on Thursday for my second round.

Take care all

Chris x

finn353
Member

Re: Cold caps

hi i have used the paxman coldcap twice with epi,a week after my first treatment my scalp was itchy and felt like it was on fire then i lost lots of hair i still have a covering but under my long fringe i am very thin.it looks ok with a hat with or a headband.i wash it once a week with baby shampoo and do use a cold hairdryer and my hair for a couple of days looks ok.after the second epi my scalp was ok and i have lost hardly any.i have a lovely wig for bad hair days,i am due my third epi on wed.best of luck everyone jackie xxxx

maisie54
Member

Re: Cold caps

hi im having fec first ,so reading your comments seems very reasurring i have very thick hair so hope this may help! WILL LET YOU KNOW. XX

angels12
Member

Re: Cold caps

Hello

I have been using the coldcap throughout all my cycles, I will have the fifth one on Wednesday, my chemo regime as been FECx3, and TAXOL x3.

So far I have found the coldcap very succesful,I started shedding the most from the 18th day of the first cycle two weeks into the second cycle, then it slowed down, yes I too felt a burning and sore sensation throughout the cycles, this is when some of the strands come away, I still have a good covering of hair it as just thinned all over, I only brush it once a day, and hardly ever wash it, the less you do to it the better.

good luck x

finty
Member

Re: Cold caps

I have found the sold cap very susccessful with FEC. Am due to have my third tomorrow, and have only had a little bit of thinning - still have a full coverage. I haven't had a sore scalp - but I take care not to touch it, and have my hair very short - I suspect it is the weight of hair that causes some of the pain. Good luck xxxx

maisie54
Member

Re: Cold caps

hi everyone im due to start chemo on feb 10 woild like to try cold cap treatment .asked bc nurse few weeks ago abuot this was not keen on me using reg chemo not getting to scalp !but spoke to oncologist who was ok with it . a little unsure on what to do, any suggestions? xx

Chris5555
Member

Re: Cold caps

Hi everyone

I've been following this thread with interest. I started EC on 14th January and used the Paxman cold cap. Day 19 now, and finding hair everywhere and my head is so sore it is giving me a headache.

The cold cap I used was on for 1/2 hour beforehand and 2 hours afterwards, which made the treatment long. I felt very cold even though my daughter kept me supplied with hot drinks throughout. I have treatment 2 due on Thursday but am dreading the cold cap again.

I would like to know - from anyone who didn't lose their hair - does the sore head continue? and is the cold cap any more uncomfortable with less hair?

If the hair does all fall out - I presume the itchy/sore head stops?

Chrisx

KatieFizz
Member

Re: Cold caps

Yes, at least we've managed to get cancer in the winter, ha ha!! We'd have to resort to floppy sunhats otherwise, and theyre just so not trendy !!

slatch
Member

Re: Cold caps

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

trumpet1
Member

Re: Cold caps

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

KatieFizz
Member

Re: Cold caps

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

slatch
Member

Re: Cold caps

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!

trumpet1
Member

Re: Cold caps

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

elle58
Member

Re: Cold caps

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

finty
Member

Re: Cold caps

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?

trumpet1
Member

Re: Cold caps

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

grace59
Member

Re: Cold caps

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

Richo
Member

Re: Cold caps

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

janilizi
Member

Re: Cold caps

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.

elle58
Member

Re: Cold caps

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

finn353
Member

Re: Cold caps

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

KatieFizz
Member

Re: Cold caps

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

pangapanga
Member

Re: Cold caps

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!

finty
Member

Re: Cold caps

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.

jellybean1
Member

Re: Cold caps

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

grace59
Member

Re: Cold caps

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

car
Member

Re: Cold caps

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

Chris5555
Member

Re: Cold caps

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

1dayatatime
Member

Re: Cold caps

Hi grace59

As I mentioned earlier in this thread I'm using the type of cap that is kept in the freezer. From what I've read it does seem that it might be less effective than the wired in type but I'd also say that it's potentially more bareable to use so less chance of giving up on it.

When I go for chemo I have infusions of steroids and anti-sickness meds before the actual chemo drugs and I put the first cap on at the same time as the first infusion is started so that by the time the chemo starts I've been wearing the cap for about 20-30 mins. The chemo itself takes about another hour and then I wear the cap for a further 30-60 mins. The cap is changed every 30 mins so I get through 5 in total.

I'm now 4 days since my 3rd FEC and still have a full head covering of hair, I don't need scarves and don't own a wig. I wear a hat when out walking but only because it's cold. My hair has thinned, especially towards the back on top but if you didn't know what my hair looked like normally you wouldn't see anything odd about it.

I have no underarm hair left though (all departed very suddenly overnight a few days before 2nd FEC) and I'm quite happy to do without that - a small bonus to this treatment!

Give the freezer caps a go, they can work and you've nothing to lose by trying!!

Linda
xxxx

grace59
Member

Re: Cold caps

oh my god josyemarie I should think you really needed that!! How dreadful ....Katie/Josy thank you for the comments about hairlength.It really is a minefield. I rang my Cancer Centre this morning to see if the nurses could advise & was a little shocked to be met with "I've never seen a lady keep their hair". Well clearly none of you lot live in Wigan!!
Apparently they have the caps in the freezer & they are replaced every 20 minutes.I get the impression that in other centres the caps are "wired in"...am I right? I also suspect the wired in ones might be more effective.I was further concerned to be told that I only have to keep it on 20 mins after the treatment which sounds much shorter than some of you guys are suggesting.Perhaps this is why they are not successful !!!!
Yours in frustration G x

josyemarie
Member

Re: Cold caps

I had very thick waist length hair which I cut to the middle of my back. I had 4xFEC,4xTax and wore the coldcap throughout. I was attacked just after my first taxol by a raving lunatic so will never know if that was the reason all my hair fell out as I'd still a good head of hair after the FEC!

KatieFizz
Member

Re: Cold caps

Hi Grace and Jackie,
It is a minefield, isnt it?!
And yes, its interesting that Naz was told it wouldnt work with Tax, but if you research any of the cold cap sites, that is a drug that is listed as being suitable for the cold cap.
It is a bit of a performance and I certainly couldnt do it without my sister - but its been made more complicated because the hospital dont provide it ..... if its done by the staff, its not such hard work because they have the equipment on hand.
Ive read success rates of between 20% - 90%, so really variable. I guess the colder it is and the longer you can tolerate it, the better the odds of it working. My hair is shoulder length and quite thick. I would recommend you do as little as possible with your hair - certainly no colours / treatments. Im just getting used to it being curlier than normal and a little wild - quite like the fact Im not spending time or money on it at the moment!

Let us know how you get on,
K x

grace59
Member

Re: Cold caps

Thanks so much to all of you....So much experience to draw on. I'm assuming the ECT I'm doing is the EC part of FEC plus then 4 cycles of Taxotere which Katiefizz is having? I'm only just getting my head around this!! Also interesting to read that Naz was told The Cap wouldnt work with Tax & it is working for Katie!! Naz I'm sorry to hear it didnt work for you though. Katie what a performance you are going through ....Can I ask how long your hair is??
I've been warned any type of dye/colour is out of the question. Is everyone in agreement?
Muck love to all G x

finn353
Member

Re: Cold caps

i too have tried the coldcap and found the first ten mins a pain with the brain freeze,but then it was bearable not as bad as i thought.i am washing my hair every 5 days with baby shampoo and so far am losing hardly anything,my hair dosnt look its best and the high lights i have are growing out but at least its still there,i am on epi at the moment and then go on to tax so i am pleased it worked for you,lets hope it works for me as i know i will hibernate if lose my hair,although i am going for my wig tues just in case,best of luck jackie x

NAZ
Member

Re: Cold caps

I had my first fec on the 17th December, i used the cold cap, but not the Paxman type..
Unfortunately it did not work for me and my hair went after two weeks post chemo.
I was then told that the cold cap would not work with the taxatore anyway, so i didn't bother with it during my second cycle.

I think it can be great if it works though!

Naz x

KatieFizz
Member

Re: Cold caps

Hi All,

I first had chemo 4 years ago and lost all my hair. When I was diagnosed again, I really wanted to give the cold cap a go - but unfortunately my hospital doesnt provide it.
So, im hiring the Penguin Cold Cap myself, the chemo unit have been very supportive, and leave us (my sister + friend) to do it all ourselves. It is a logistical nightmare, and I certainly couldnt do it without my sister (in fact, she does it all, I just sit there and endure it!oh, and pay for it!). The company who provide it have been fantastic - I have it for 40mins before chemo (arrive at the hospital with it on), during the chemo, then for 3 hrs afterwards - but go home as soon as the chemo finishes and carry on at home into the evening.
It is quite painful for the first 5 mins, then becomes fine. The caps have to be at -30 degrees when they go on and changed every 30 mins. I have just had my 3rd dose of taxotere, and so far, so good - i lose some when I wash it, but nothing that causes me any concern. I only wash my hair once a week, dont use products / hair driers / straighteners, so its not looking its best as you can imagine. But for me, its worth giving it a go.
We are all very different, we all worry about different things and we all cope differently - as one of the chemo nurses said to me recently - you just have to do what is right for you.
So, if anyone is using the cold cap - good luck and I hope it works for you!

K x

jaykay22
Member

Re: Cold caps

Grace, I'm due for my third lot of FEC next week. Like yourself, I was dreading losing my hair and chose to have the cold cap.I will admit that it's torture, especially the first 15 minutes but after that your head just seems to go numb and you get used to it. Anyhow I've stuck with it and touch wood I still have a full head of hair, it hasn't even thinned. I've always had very long hair but the day before my chemo started I had it cut into a much shorter style (not cropped). You're advised not to wash your hair so often, or to use a hair dryer so I figured that short hair would be more managable.
Good Luck!

RECS
Member

Re: Cold caps

Grace I think short helps - it will thin though so be prepared - there are lots of great stories about it. I myself gave up after 3 goes but I had EPI so the cap had to stay on for 1/2 hour before treatment and then during treatment and then for 2 hours so it was quite an ordeal - different regimes have different timings.

wishing you all the very best. xx

grace59
Member

Re: Cold caps

Hi Ladies...I'm joining your discussion because I start ECT on the 19th...Slightly bothered by the fact most of you seem to be on FEC...Anyone else doing ECT ?? I'm going to try the Cold cap for sure so your comments are so helpful. My Oncologist wasnt thrilled but said I should have my hair cut short if I wanted to try it. My hair is shoulder length after many years encouragement!! Any views ladies? I feel that cutting it short would be tantamount to losing it anyway!! If I'm going to lose it fair enough & obviously if it falls out partially will do the sensible thing & crop it but now??!! My hair is thick which I know has pros & cons, good that if it thinned noone would know but not so good if cold cap contact is reduced....Help!!
Grace x

eva_nicole
Member

Re: Cold caps

i was originally told i would have radio after my wle. But then the size of Larry the Lodger (the name of my cancer) was bigger, so i am have having 6 fec and then 15 radio. Really big shock at the time,
eva

Steph10
Member

Re: Cold caps

It's a pity Dena, you were told you would just have rads and then not. I was originally informed that it would be rads only if the nodes were clear, unfortunately the sentinel node wasn't so now going for axillary clearance this Monday. It's just the thought of eventually going back to work still wearing a wig...

jellybean1
Member

Re: Cold caps

I wear contacts too but find that my glasses have been used more since starting Chemo, my eyes do get a bit itchy and sore and I have found that my contacts do not seem to give me as good vision as I had with them before. I read somewhere that the chemo can cause your eyes to deteriate a bit but that it gets better after chemo has finished. it does certainly feel that this has happened to me.

You are right to expect the worst, I was told initially I would just have radiotherapy and it was a shock when they told me that chemo was on the cards for me. I would have preferred to have been prepared for it and then told I didnt need it than the other way around!

Whatever happens, its good to be as prepared as you can, its not a nice experience but as a lot of ladies say it is doable, just take one day at a time.

Dena xx

Steph10
Member

Re: Cold caps

Thanks so much for your replies. When I next go to clinic and told I need chemo (I'm working myself up for the worst and then it'll be a nice surprise if not needed!), I now know what sort of questions to ask - that's if it's offered at my hospital. Good advice about the paracetamol and glasses. I'm very shortsighted and usually wear specs, but will pop in the contacts for the chemo! Although, that's a thought - do chemo and contacts go well together?

jellybean1
Member

Re: Cold caps

I would thouroghly reccomend the cpld cap, I have had 4 cycles of FEC and used the Paxman Cold Cap on all occasions, it has worked very well, I haven't really lost any hair at all and it has been absolutely great.
It is hard though, they put the cap on about 30 minutes before they give me the chemo, then I have to leave it on for 2 hours after the treatment. Once its switched off it is left for about 30 mins then removed. I have to have my hair dampened and then covered in conditioner, once on the cap creates a cold seal. It is really uncomfortable for the first 11 - 15 mins, then your head goes numb and it is bearable. One the cap is removed my hair is frozen doe a few minutes, but just take a hat to wear til I get home.
tips for survival - 1. take 2 paracetamol about 30 mins before they put it on , 2 take lots to read as it is a long time to wait, 3 use very mild shampoo and conditioner after wards to help keep your hair healthy.
The worst think is the first 15 mins, I havent had the ice cream headache yet, but I think that is dowm to the paracetamol.
Everytime I say that I wont do it again, but it is nice that I have kept my hair, it may not be as smooth and lovely as it was and may look a bit like a haystack, but it is my haystack and its nice to have it!
Give it a go when it works its great!

m1yu
Member

Re: Cold caps

I've had my last chemo the beginning of Dec and wore cold cap all through my treatment. It's cold and heavy. Not very nice. Especially with me having to take my glasses off, which means I can't see very well.

I also had it on for about 30 mins before treatment, during chemo and for another 30 mins after. They kept changing it as well.

All the endurance for me has been worth it because I still have a head full of hair, though it thinned quite a bit.

A few tips might be helpful:

If you decide to go for the cold cap, I found having a hot water bottle helped a lot to keep my body warm. Anyway, if you find it unbearable, you can always stop it later.

My nurse recommended me to get babe shampoo and wash hair with the palms of my hands rather than the fingers of hands.

Hope those helps and all the best with your treatment. Take care

eva_nicole
Member

Re: Cold caps

ive done 2 FEC and tried the cold cap first time. I had my hair cut really short before i started.

Unfortunately, it didnt work for me, but i would say, in my exerience, i am pleased i tried the cold cap, cos otherwise i would always have wished id tried it. I was told it was about 50-50 if the cap would work or not.

I used to be wayyyyy upset about the thought of my hair going, but once it's gone im coping ok mostly.
eva

1dayatatime
Member

Re: Cold caps

I believe there are a couple of different types of cold cap and that the the length of time you wear it depends on the type of cap and also the chemo regime you are having.

I'm currently having FEC and use a cold cap that is basically a cap shaped freezer pack. I wear it for about 30 mins before treatment, during chemo and for another 30 mins or so after the infusion has finished. The cap is changed for a new one out of the freezer as soon as it starts to warm up from my body heat.

It is uncomfortable, especially when first out of the freezer, like a bad 'ice cream headache' but I don't find it unbearable. The type of cap I'm using doesn't require your hair to be wetted so I don't look a state after it comes off! From what my chemo nurse says I believe this type of cap is less 'severe' than others, I guess that means it could be potenitally less effective but I still think it's worth trying.

I am due my 3rd FEC in a weeks time and I still have a full head of hair. It has thinned considerably but is not noticable to anyone but myself and the rate of hair loss seems to have slowed down over the last few days. Since it seems that many people loose most, if not all, of their hair around the time of the second FEC I'm hoping that it's a sign that the cap is working for me and I may get to keep my hair throughout, or at least enough to avoid it being noticable if I wear hats and scarves. So far I've only needed a hat to deal with the winter cold which is more noticable with thinner hair!

I would definitely recommend at least trying the cold cap if it's available - nothing ventured, nothing gained.

I should mention that I had quite thick hair prior to chemo so that may be helping.

Linda
xx