just wanted to reassure you all re brain cancer and cold cap.I was worried about the link and asked my bcn -she replied that it doesn't target the brain cells in that way as there is no difference between people who use the cap and those that do not-not sure if that is true but have given the cold cap a go and although i am losing 10-15 strands a time and it is def thinning i still have a full head of hair (FEC X2 due on Mon).IO did get it cut short and do all the usual (wash twice a week using simple products comb hair using hsands only etc) but hopefully it seems to be working:)
Hope you all have a good day with few se
I still can't open the freezer door without thinking of the cold cap. Good luck to all of you using it. My hair is now growing at a rate although I could have done without the curly sheep look lol! X
I have just had FEC 3 With cold cap have lost about 60% of hair, but still have hair all over just thinner. I have found the 2nd and 3rd Cap treatment very painful, but if you distract yourself by reading have a hot drink this pain goes in about 10 to 20 mins then really is ok, or should i say was for me, as i know we all have different reactions. I have found leaving my hair down was making more hair fall out. I now wear and loose scrunchie's and put my hair in a loose pony tail. I have had less hair fall out and i hardly comb it. I also find my hair looks tidy when it is up as i can't straighten it or style it. I hope you all have success or enjoy how long you hold onto your hair for. Oh i have also stopped using baby shampoo and use a Ph balance shampoo from the health shop then apply conditioner to help with less tangles. I think this makes a difference. Hope this helps, we all find different things that work for us, but i have had less hair loss since changing. Good luck if still trying the cold cap. Tricia x
I was never discouraged by my consultant or oncologist not to use the cold cap.. and brain cancer was never mentioned as a possible problem... having said that just had my second EC and am losing my hair big style... I think its doubtful I'll keep it, so the wig is being delivered and will be on standby. I was told today there are no guarantees it will work for everyone .. and I've followed the instructions to the letter . C'est La Vie. x
I asked my breast care nurse, my oncologist and the helpline at Paxman about this and was reassured that due to the temperature that definitely wasn't the case (can't remember the details! A yes or no was all I wanted!). I was concerned as I thought the brain was one of the organs affected by BC - brain, liver, lungs, bones...?
I don't know. Surely they wouldn't offer it if it was possibly detrimental to our health?? (Or is that me being naive...?)
Hi Katie Im due to start my chemo in a couple of weeks & I was also told by my BCN that the cold cap would prevent any cancer cells that might have travelled to my head from being "zapped" so I wasn't even going to consider using it cos I want to get rid of this horrible disease,so im trying to come to terms with losing my hair.Does hairloss happen with all chemo used to treat breast cancer?xx
I was also told by my BCN against using cold cap for the same reason as you i.e chemo wont treat my head area. I am having 1st appointment for treatment plan with ONC on thursday so i will ask him/her what they suggest and ill let you know.Good luck with your chemo
reading this thread is so inspiring and helped me so much. I am due to start chemo this week - 3 x FEC, 2 x TAX and still unsure about the cold cap.
My onc advised me to try it but something my BCN said is bothering me. She told me that if any cancer cells have made their way upwards the cold cap will not allow the drugs to "zap" these cells. I am not sure of the correct medical terms but she basically advised me against the cold cap. When I asked the ONC about this she said if any cancer cells has strayed anywhere they will never go upwards, only down towards the lungs/bones/liver/
Does anyone else know anything about this.
Thanks and good luck to everyone during their chemo
Has anyone tried the cold cap with AC and Paclitaxel accelerated treatments? My onc said it wouldn't work...but the paperwork my BCN gave me (from the Macmillan website) says it can reduce hair loss...
"El Katrano, it is interesting to know the 60% sucess rate for the cold cap - I was just told sometimes it works and sometimes it doesn't, I wonder how much hair you hav to keep for them to say it has worked?"
Hi Lyn - good point, didn't ask them that, presumed it meant all of it to be honest.
I loved my hair and found the idea of losing that the most awful thing and the most visible sign of cancer.
Unfortunately for me it started coming out very visibly and it was really awful seeing these huge long clumps coming out everywhere, all over carpet, pillow, bed, getting mouthfuls of it in sleep. Thats when I made the very personal decision to have it all off, as it was getting too traumatic for me and I couldn't forget about it when it was happening all the time.
It's a really personal choice all of this and how it's dealt with - but I did just want to say, though I've had my moments of feeling unfeminine with a big bald head and feeling unattractive, I still think that it's not as bad as I imagined it to be, really it isn't.
Another thing I'll say is that its sometimes nice to be able to control the heat of your head, when it's hot I can just whip off my jersey beanie that I wear at home and under scarves for padding. When it's cold, on goes the beanie, or the scarf, whichever. I used to hate getting a sweaty head when I had hair 😄
But yes, I'd rather have my pride and joy hair back thank you very much 😉
Its the fear of the unknown as well that doesn't help. xxx
I finished x6fec 2 weeks ago and used the cold cap throughout, now my hair was fine to start with and i ummmmm and arrrrrd before treatment started as to wether or not to use it,, then my son said 'mom whatever you are left with is more than what you would have it you didnt try it'
i had my hair cut short and treat it like glass, only washing it every 5 days with simple shampoo and conditioner, i dont use products or a hair dryer and i sleep on a satin pillow case..
Now the verdict has it worked?????
yes although very thin, to the extent if much more comes out i may get a blad patch on top, and i have thinned all over but my head is covered.
the thought of loosing my hair/lashes was devastating to me, i do wear 'sally' (wig) when i go out as i cant style my own hair yet but when im in my house i look fine..
its a very individual choice, for some people loosing there hair is not so important,, but to me it was, and im so glad i kept it up..
it may be a while before i can style it again but i have hair on my head which means so much to me...
love and hugs
Tricia, My chemo was cancelled because I still have a cold. It has been re-booked for next Monday which seems a long time to wait but I wasn't given a choice. The only good thing is that I am getting my wig on Friday and if my hair keeps falling out at its current rate I wont bother with the cold cap next week. Well done you for persevering.
El Katrano, it is interesting to know the 60% sucess rate for the cold cap - I was just told sometimes it works and sometimes it doesn't, I wonder how much hair you hav to keep for them to say it has worked?
Best wishes, Lynn x
I had my 2nd Fec today. Cold cap was so much colder than the 1st time as i have now lost quite a lot and it is much thinner. The 1st ten minutes were not very nice then it settled.
I have to say i came home from treatment today and was so hungry have not stopped eating since i came home, came on the forum to distract me from eating the contents of the fridge.
Lynn im glad you had your chemo, is your cold any better? Did you find the cold cap a little harder this time?
Good luck to everyone using the cold cap.
My BCN said that her experience of the cold cap in the hospital I go to was that about 60% of people didn't lose their hair.
I gave it a go but wasn't one of the fortunate ones, mine started coming out and I got a receding hairline a couple of weeks after the 1st treatment, mine was the new style cap with constant refridgeration. My hair was in very good condition, one of my best assets but I did have naturally quite fine hair so it was obvious and then I shaved it off, not easy but at least I give it a shot.
You may not believe me, but it isn't TOO bad once you get used to it - honestly.
Hi, I think there are two types of cold cap, the older style freezes caps which are then put on your head and when they start to warm up it is replaced by another frozen cap. The newer type uses a machine to freeze the cap and keep it frozen whilst on your head. From what I have been told, the newer style works a lot better than the old style.
I have only had 1 lot of chemo so far (2nd today) so it is too early to say if the cold cap will work for me but so far it seems to be reasonably sucessful.
Best wishes, Lynn x
I don't think using conditioner will make a lot of difference since it is the hair follicles which are being attacked by the drugs and not the actual hair itself.
In my hosspital they poo-pooed the use of a cold cap and nobody was offered it (that was 2008) but I have heard that another hospital in the area is now offering them and there has been some success.
Your experience is exactly the same as mine (I am having 2nd fec tomorrow).
I have lost loads of hair but people I trust tell me other people would not notice. I will use the cold cap tomorrow but I think if I keep losing hair at this rate I probably wont bother for fec 3. I have been using a PH neutral shampoo every 4 days and avoiding blowdrying etc. I am getting a wig on Friday so depending on how it looks I might not be so worried about losing my hair.
I think I have been lucky though, because at least my scalp is not hurting.
Good luck tomorrow.
I hope you don't mind me joining your forum. I also had cold cap on FEC 1, my hair is coming out quite a lot at the moment. I have been washing every 3 days roughly and putting plenty of conditioner on, i have very thick hair which is a lot thinner but still looks fine. Not sure how much more i can afford to lose before it gets noticed. I am finding hair everywhere. I have my 2nd FEC tomorrow and was a little concerned it might be worse as hair is now thinner. It great to find people that are trying this so i can compare notes. I was going to try a leave on hydrating/strenghtening conditioner tonight to see if it helps. I am also getting sensitive scalp in places.
Havent been able to post a comment in ages! Hope all you ladies are doing well. I am half way through now as I have just had fec 3. Doing ok...losing hair each day but no one can tell. My wig lady told me to go away! So just keeping my fingers crossed! x
smortiboys, at my hospital they put on masses of conditioner. Getting the hair wet helps to cool the scalp and putting the conditioner helps to protect the hair itself while still allowing the cold to do its magic.
Morning Ladies hope you all doing ok. FEC 2 keeps me awake! When I have cold cap I have to dampen my hair and then load it with lots of conditioner. But it is getting very thin. Think may have to get Miss Wig out today! Best of luck x Adi
Glad FEC 2 went ok. My hair has gone very fine too...I can feel the cold now! Can I ask do you put anything on your hair before you pop the cold cap on?
Ta, Sarah x
Sal... well done on FEC 2 yesterday, hope the se's are good to you,,my unit keep the cold cap on me for 2 hours post the E, then switch it off and leave it for 10mins,,, my hair is fine, but i still think its worth the extra time being there im sure if id not used the cap it would of all gone by now,,,bless your hubby for helping out on the ward, bet he loves the uniform !!!!
take care all
love and hugs
Woo Hoo Donna, quite a change in your posting from your last hair washing session 🙂
Had FEC 2 yesterday and as nurse was putting the water and conditioner on quite a bit of my hair came out, luckily its very thick, but she said she would leave me with cap on for an extra hour at end of chemo so had to sit there for three hours, my poor OH has to be the most patient man in the world but he has now been roped in to hang up the IV bags in the ward as so many of the chemo nurses are too short...he is just a big old flirt really!
I too have to admit i found the cap tougher on FEC2 than one maybe because my hair has gone finer.
Keep it up ladies, i still think its worth it!
Love Sal x
good morning ladies,,,
well i washed my hair in the shower yesterday and used simple shampoo and conditioner,, well all i can say is YIPPIEEEEEEEE, no tangles no tears and tantrums,,, just a few loose strands,,i could kick myself for my last experience, but i will learn from that just wish i could turn back time then i wouldnt of lost so much on monday..
take care all
love and hugs
Glad fec two was ok. I have been tired this week and a bit down. I think this is the hardest thing that I have ever done but I know it will end soon! I live by the sea and its been really sunny today which made me smile. Feel like I am putting weight on too but I am eating alot more fruit and veg!
Lost some hair today but I am getting used to it! Just longing for the day that I can forget about the big c.
Morning Smortiboys and Donna I come on here to set me up for the day as you all cheer me up and make me laugh. Know we all have bad days but at least we have each other for support. Had my FEC 2 yesterday and nearly gave up on the cold cap as it was not nice yesterday, but it got better. My hair is starting to drop out but oncology nurse was very impressed at how little as she didnt notice any difference. I know I should not really wash it today but decided I need to have a cut to tidy it up and am hoping to go out tonight with my Partner, have these tickets to see Jo Brown which I purchased as Anniversary present last year (~before this started)! Going to chance both as need to get out. By the way FEC2 has been a lot kinder to me than FEC 1 - hope I haven't spoken too soon!!!! Have hair day ladies x Adi
well im going to wash hair again today, and after mondays experience, im going to use 'simple shampoo' and do it the the shower and not over the bath,,
please keep fingers crossed for me,,
i wil let you know how it goes
I cut my hair just below my ears...and wash it in the shower and it has been ok so far...fingers crossed. I am more concerned about my heart burn at the moment!! Another side effect!!
Morning Ladies and thanks for butting in notbreastfriend as stories like your are fantastic and of reassurance. Well done for getting through it. Right ladies we will carry on with the cold cap and look forward to posting same results when we finish our FECs and TAX. Your are all offering great support thanks ladies. Better get in shower ready for FEC2. Maybe not need to keep Portacath wounds dry so it will have to be the bath.... Have a good day x
may i ask? did any of you have my experience when washing it,, it went into a 'dreadlock' and matted together,.. wonder if it was because i had my head over the bath? oh i dont no but what i do know is that i wont be doing THAT again
good luck to all
love and hugs
I have just finshed 6 FEC T and used the cold cap for all 6. I lost very little on FEC and my hair thinned on tax but it is still here and doesn't look too bad. Like Finty I have a sopt where it is thinner than the rest but changed my parting. As I have lost an eyebrow, having a fringe is useful. For me it was really worth the extra time on the ward.
Good luck with it and please go easy on the straighteners!
sorry to butt in on your thread. Thought you could use a success story, I used the cold cap last Jan - June for my Chemo and it worked really well did thin a lot and kept thinning through to my 4th chemo but not as much as expected, I only washed my hair once a week using dove ph balanced shampoo and patted it dry, I was naughty on a few occasions and used my straightners, once chemo was over I cut my below shoulder hair to chin level and now have my shine back and my thickness also, noone knew i was going through chemo unless i told them.
Its hard doing the cold capand adds quite a bit of time onto your hospital visit but its worth it if it works.
Really like chatting to you all...its really helping me! More hair came out today and cant believe how dry it is!! Mine is full of blonde bleach but I have never seen it looking so unhealthy! I will keep going but not going to look rubbish so if I have to shave it off then I will do it! The fact is that my hair is dying and anything that I put on it needs to be full of energy.
I am using a salon shampoo...and lots of conditioner. Just pop it on your head and leave it to soak in. I know it sounds sad but I just dont want people to stare at me which is why I am soooo keen to keep my hair. I kept my cancer hidden for months and now just want people to treat me for me. So now that I am in my second fec is it more likely that I will keep most of my hair?? Any advice?
Evening Ladies I thought I had got away with it. Even this morning no hair loss but an hour later I think it did a Tommy Cooper - 'Just like that!' I ran my fingers through it to tidy it up before hospital visit and could not believe it - it was just coming away. Oh well we knew it would happen. Got FEC 2 tomorrow and think still going to use Cold Cap. Have booked to have some cut as it may be a bit heavy and this may not be helping. I suppose some hair is better than none. Why are we so vain? Keep smiling. Adi
Sally,, thankyou so much,,,
i wonder if i should use a different shampoo and no condtioner,, my hair has colour i though??
i use a shampoo from holland and barratt as i was told it shouldnt contain any ph and additives and not to use baby shampoo????
oh well time will tell
omg you are brave using straighteners, mine are collecting dust now along side the thickening shampoo/conditioner/moose hairbrush
take care all and lots of luck for your chemo this week
love and hugs
Good evening all, oh Donna P just read your post from last night cos just got in from work, felt so bad for you that you were so cross with yourself, am glad you feel better this morning. I use baby shampoo and no conditioner.
Donna and smortiboys i too think like you two, no point going through the cold cap thing if your hair still looks rubbish i also got to confess to getting my straightners out if i am going out anywhere special. My bad !!!!!!!!!
Bloods tomorrow and FEC2 on Thurs so hopefully my hair will hang in ther.
Keep persevering girls am thinking of you
Another one here with words of encouragement for you ladies. Keep going. I can only echo what Lynn has said that if you've got through two sessions and have kept most of your hair it looks like it's working. You will continue to lose hair each time, I did, but kept going and although it thinned on top I still think it was the right thing for me to do. I would say though that the cold cap does feel colder the more hair you lose and at my last session the nurse put two little squares of gauze to cover where it was thin.
Good luck to all of you.