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Hair loss

28 REPLIES 28

Re: Hair loss

Not logged into this forum for three weeks as I've been in hospital for six days and then just did not feel like logging in.  I can assure you that loosing my hair is not the worst of the se's of going through chemo and this dreadful experience.  I had a partial mx 11 years ago and in July had a full mx.  The dreadful feeling of chemo and the loss of controlling my own life is far worse than my hair loss.  I know my hair will slowly grow back but some of my confidence I think is lost for a while.  All I can say is stay strong and positive.  When I think back to the cold of the scalp cooling cap it just was not worth it and the cost of all the extra things I purchased to try to keep my hair was just not worth it.  I proudly wear a scarf or hat and know that in the New Year my hair will return.  Take care.  Virtual massive hugs to all.   xx

Re: Hair loss

Hello, MellyJP

I read your post last night, and have been reflecting on how the loss of hair for many  of us ladies here, is absolutely the worst thing to cope with, more so than surgery, as Glttergirl said.

I was pretty obsessed with my faith in the scalp cooler, and I did manage to keep around half my hair.

When I was diagnosed, I hated the lack of control over who I was, as I saw it.  Before diagnosis, I was a Head of Faculty in a high school [I have since taken early retirement]-managing four colleagues.  I got so distressed that suddenly I was swept, albeit temporarily, out of professional life, and that I was now a cancer patient, managed by my medical team.  Cancer robs us of so many things, but I felt that if there was at least a chance of keeping my hair, it would give me a little bit of control amidst a situation in which I felt I had no control.

However,  a friend who had gone through chemo ten years ago said to me- you must not obsess on losing your hair, but concentrate on getting better.  Being here for my [grown up] children, being around for any grandchildren which may come along in the future, was far more important than a temporary loss of hair.   This is true, of course, but nevertheless it does not take away the fact that hair loss is a devastating thing to cope with.

I hope you will gain strength from all the posts on here, saying that you do get through it, because you do!

 

Re: Hair loss

Oh MellyJP, reading your post is heartbreaking, mostly because I can totally empathise with what your going through. I had lovely long, thick hair ( which reached well below my (then) boobs! I had it cut to shoulder length just before chemo, which in itself was really traumatic. I've always had long hair, it's part or should I say was part of my identity and even when I reached my 40's I refused to cut it! I tried putting mine in a pony tale a few weeks after chemo but that actually pulled more out! 😞 I'm scared to brush it now and avoid it all costs. It does mean that every day is pretty much a bad hair day. And it's very thin.. I do sometimes think it would be easier to shave it off, but I hate wearing my wigs even more! This is sounding very vain, for which I apologise, and I know I just have to keep telling myself it's only temporary, but I think I'm finding loosing my hair more traumatic than having a mastectomy.
I think I just wanted to say that your not alone in having these feelings. It's normal. It's hard when the people around you don't really know what you're going through (no fault of theirs). Chemo is really hard but you will get through it. We are all here to support you whatever you decide to do. Take care. Xxx
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Re: Hair loss

Hello,

 

Thank you everyone for your replies.

 

 I have used the cold cap twice now and I feel I have shed most of my hair, I have been really upset this week as I could cope with the pain of both operations I have had to endure this year but my hair which was long and thick before treatment has been heartbreaking,   I am able to scrape it back into  a short ponytail but my scalp is quite visible.  I can disguise it a bit by combing it.  I think I may try the cold cap just one more time as  I really want to believe in it.   I know it will grow back but I just don't feel like myself anymore.

 

 My husband is trying  to understand and assures me he loves me whatever but I was such a socialble person before all this happened and in the space of the past 6 months not only have I have had a baby but I then discovered I had breast cancer and have had to undergo a lumpectomy then a mastectomy plus chemo at the moment.   I am trying so hard to be positive but it is so hard.

 

Melly x

Re: Hair loss

Oh no, KatePB! I'm really sorry to hear this is happening. I have to say, my hair has also been shedding - quite dramatically after first chemo. At that rate I was certain I was going to be bald, but it did slow down. I'd say I've probably lost half my hair but even considering this, I'm still 'passable' on the street and don't wear my wig. I wait to see if it will last the course - I've just had number 4 of 6 of FEC90 and am feeling pretty ropey. That's an added bonus for you - you don't have to go through the process of washing all the conditioner out of your hair after chemo when you really don't feel up to it! I'm sat in bed waiting for my hair to dry a bit so I can put my silk cap on and go to sleep!! Conjures up a lovely picture, no? !!! Take care all. xxx

Re: Hair loss

Unfortunately for me just 3 weeks and 3 days after starting chemo and using the Paxman scalp cooling cap just twice my hair has fallen out big time.  I've followed all the advise given but now visited my hairdresser so that he could shave. my hair. 

For those still using the cooling cap do not give up as it might just work successfully for you.  Good luck.

Re: Hair loss

Hello MellyJP,
I would just like to add to everyone else's comments on this and say don't give up on the cold cap! I have cycle 4 of FEC90 on Wednesday (am having 6 in total, so am just over half way). My hair started to fall out big time just over 2 weeks after my first chemo. It used to be really long and thick but I had it cut to a shoulder length bob just before treatment. I'm glad I did. I was forewarned that some would fall out but like you, started to panic a bit when it did. I was told by the nurses when I went for my second chemo that I would have been bald by that stage had I not used the cap, so it is working. Unfortunately I can't do a thing with it as any form of handling makes it shed but I wash it twice a week (it still gets greasy so I can't last a full week without washing), use a wide tooth comb when it needs combing (and I try to avoid doing that too if I can!!) I read on someone else's post that it's like having a bad hair day for five months, which made me smile because it totally is!!! But at least I still have hair to have a bad hair day with! It is quite thin and I have bought some caboki (primarily used by men to cover bald patches/thinning hair) which has also helped me disguise the patched where it's getting thin.
I have also read that because using the cold cap protects your hair follicles a bit, it also grows back quicker after treatment, which if that's the case will be an added bonus!!
Hope you're getting on ok.
Take care. Xxx

Re: Hair loss

Hello, MellyJP. Welcome to the forum- those of us who have been through the treatment are always happy to pass on any tips/experiences we have had.

You mentioned you have been brushing your hair, and I am wondering whether you would be better using a wide tooth comb, and make sure you hold the top of each strand as you go through, to ensure you are not tugging at the scalp?  I found that very effective, as the roots are so fragile, it does not take much to pull them out during  treatment.  You could scroll down to read my replies to KatePB about using the scalp cooler.

  I kept around 50% of my hair, and I was thrilled with that, it made the whole traumatic business of chemo, just that bit more bearable!!  I was determined to try and keep some of my hair if I possibly could, and although it is not easy, I could not recommend trying to persevere with it, highly enough.

Re: Hair loss

Hi MellyJP

When I cold capped, there were times when I seemed to lose alot of hair but like you, others didn't seem to notice. I considered giving it up  after my first cycle of chemo as I didn't think it was working. However, my chemo Nurse told me if it wasn't working, I would have lost nearly all of my hair after the first cycle.  I can't say if this will be the same for you but it might be worth hanging in there. Now nearly 3 weeksa after finishing chemo, my hair is quite thin but seems to be thickening and growing quicker than I thought. Hope this helps x

Re: Hair loss

Hi Melly and welcome to the BCC forums
Along with the support and shared experiences you will soon have here our helpliners are on hand with practical and emotional support so please feel free to call on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays

Here's a couple of links to the BCC hair loss information and further support for you:

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/breast-cancer-hair-loss-bcc5...

http://www.breastcancercare.org.uk/breast-cancer-services/information-support-sessions/headstrong

Take care
Lucy BCC

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Re: Hair loss

Hello, I am new to this forum and have just had my second FEC. I am also using the Paxman Coldcap. Over the last two weeks my hair seems to be coming out in large amounts when brushed, although not noticeable to anyone else is this normal? I am finding it very distressing and wonder is Coldcap worth it? Thanks

Re: Hair loss

Thanks Helm for your reply.  I was told the cold cap needs to be on really tight especially on the crown otherwise hair loss would occur.  Mine was on for just over three hours but the nurse was sat with me virtually all the time injecting chemo into my cannula so the time passed very quickly.  Hope you cope okay with the hair loss and use of scarves, wigs, etc.  Good luck for remainder of your chemo.  Hugs. xx

Re: Hair loss

Hi, I started out using a coldcap and I do feel that it did help slow down hair loss , so I would recommend it . I had mainly thining around my crown so I was able to cover it with a scarf worn like a headband, rather than a full scarf covering. But I stopped using a cold cap  though on session 3 of FEC, just because the whole process and time involved was getting too much for me. After that I noticed my hair loss was more rapid. I've just completed session 4 (switched to Docataxel) and because the hair loss is more extreme have decided to get rid of it all - attacked it with the kitchen scissors the other day and this morning, and I have a hairdresser coming on Saturday to shave it all off:)

Re: Hair loss

Sorry I've not contributed this last week.  Good to read comments that have been posted in the meantime.  I had my 1st cycle of FEC 8 days ago and unfortunately suffered very badly from it.  Thankfully now under control until cycle 2.  The scalp cooling cap was much better than expected.  The worst part for me was when the nurse took it off as I had not thought about ice on my hair.  I'm not a headache person but also developed an enormous headache but will be prepared next time.  The three hours went quickly by as the nurse was sat with me the majority of the time putting the chemo into my cannula.  Apparently some of the nurses have been trained in newer techniques so will wait and see what happens in a couple of weeks.  Again I had taken earphones to listen to music and a book to read but never thought that I could not put earphones or my glasses on so was extremely grateful to have the nurse with me as we talked over the chemo, daily life, etc.  I was advised to use Simple shampoo.  I had previously purchased Baby shampoo but was told it was too harsh due to its soap content and told not to use a conditioner.  Also advised to wash only once per week, comb very gently once a day and avoid dying/perming for 3 months after.  They advised not to have it cut - wished I'd know that before - but as someone wrote on here I've spoken to my hairdresser and he is doing an old fashioned dry cut next week using my wide tooth comb.  Also recommended to wear a hairnet whilst sleeping to avoid knotting of the hair and if possible a silk/sation pillowcase.  Hospital did say that research now shows using scalp cooling (and this may depend on the manufacturer of the scalp cooling I suppose) with fec there is an 89% chance of not loosing hair - will wait and see.  Trust you all go on okay and thanks for all your input.  Good luck.

Re: Hair loss

Thank you Dogmad 84. I usually have my hair coloured but obviously haven't had this done since March. I'm now completely grey but the colour's growing on me (no pun intended!) so I may stay grey. I will carry on with the baby shampoo/conditioner and wear my Baker Boy hats when I go out. Take care x

Re: Hair loss

Good afternoon, Mac 123.  Pleased my comments were helpful.

I continued with the same shampoo regime, including not using heat appliances, for six months post chemo.  That was what my BC nurse advised. 

I now also use an organic, ammonia free hair colourant, which I am very pleased with, and which I intend to stick with from now on.  I hope that helps- all the best., and please do not hesitate to ask if there is anything else you were wondering about.

 

Re: Hair loss

Morning Dogmad

Your reply to this thread is really helpful for me as I finished FEC 2 weeks ago and cold capped throughout. I've lost about 50% of my hair. I wash it twice weekly with Johnsons baby shampoo and conditioner, pat it dry then leave well alone. I'm not sure when I can use my hairdryer or revert to my conventional shampoo/conditioner though-any suggestions please. Thanks very much.

Re: Hair loss

So pleased my comments were helpful, KatePB.

The name of the shampoo and conditioner I used was Awapuhi, with Wild Ginger, by Paul Mitchell.  Some of the 'top -end' salons will stock it- they normally list local stockists on the Paul Mitchell website. It is a lot more than I would normally pay for shampoo, at around £19 each per product, but I really thought it was worth it, and each bottle lasts ages, as you only need a 10 pence size amount each time you shampoo.  I worked it into a lather in the palm of my hand, before applying it. 

You asked about trims during treatment.  Your hair will be too fragile to stand the rigours of the backwash, so I would wash mine at home before I went, then my hairdresser would trim it by using a water spray as she went, being very careful not to tug on the hair.

I continued with these dry trims, and the  hair wash routine with the Awapuhi shampoo for quite a while after the chemo had finished. This will sound bizarre, but your brain will tell you when your hair is back to normal, and you can return to your 'normal' hair care routine. I cannot really explain this- you just know.

 I think they recommend leaving any hair dye until you are six months post chemo.  Bizarrely , my new hair growth returned with very little grey.  Before chemo, I had quite a lot of 'greys' - now I have just a spattering, and my hairdresser applies an ammonia free/organic hair colouring, which I shall continue using from now on, as I don't really want to bombard my body with any more chemicals after the chemo!!

Chemo is now eighteen months behind me, and my hair is almost back to the same thickness as it was originally.  The hair I kept is jaw-length, and the new growth is now just one inch off catching up with it.  I have it in a bob, with a full fringe- but the fringe hair certainly took the longest to get back to its former thickness, as at at end of chemo I was left with just tiny strands for a fringe.

I do hope you succeed with the scalp cooler- I would not be truthful if I said it was easy, and I remember during the last two chemo sessions, that I just sat sobbing quietly to myself, as I was so fed up with it- but I was so determined to keep some hair, that I persevered!!  I am so glad that I did.

Do write an update of how you get on.  Please ask if there is anything else you would like to know- we are all here to give support, if we can.  All the best! 

Re: Hair loss

Hi Dogmad84

Many, many thanks for your reply.  It is really kind of you to spend time to give so much information. 

I had my first blood test this morning and commence Fec chemo tomorow.  I also saw my oncol and lead nurse this morning who both told me that with the cold cap people usually keep about 50% of hair so it is good for me that you also, as a patient, confirm that - brill news as like you I would like to be as normal as possible and not be seen as a cancer patient.  Thanks also for the tip about shampoo - I'll investigate that.  No problem with the wide tooth detangling comb as I already have one from my younger days of frizzy hair just a matter of searching it out.  One question - how did you manage when having your hair cut - presume just cut and towel dry without blow drying which is strange when going to the hairdresser.  Thanks also for tip on eggs - I love them scrambled and in omelettes.

I'm certainly going to give the cold cap a good shot.  Now just want to get start and end the other end of the process.

Thanks.  Hugs. xx 

Re: Hair loss

Hello, Kate PB.  I used the Paxman Scalp Cooler very sucessfully- I managed to keep about 50% of my hair. I would strongly recommend you give it a go.

Obviously, the most overwhelming objective is to get better, but using the scalp cooler gave me a bit of control at a time when you feel all your decisions are totally out of your hands. Another reason for my using it was that  I wanted as much as possible, not to look like a cancer patient to the rest of the world!!

The protocal for keeping your hair as best as possible, is very tough- I washed mine just once a week, using a chemical free shampoo and conditioner from the Internet, which was enriched with collagen, to strengthen the hair follicles.  You are not supposed to rub the hair, as it is very fragile, but pat it very gently all over the scalp, using the palm of your hand rather than your fingers.   I combed it through with a special wide tooth detangling comb from Boots, and you are not allowed to use a hair drier or any heat appliances, but just let it dry naturally after you have very gently patted the wet hair with a towel, or keep it inside a turban for a while,  then comb it through.

I kept most of my hair really well during my first three cycles of FEC, but the biggest hair loss was during my 3x cycles of Taxotere. Quite strange, really, because FEC is supposed to be really bad for hair loss.  

I managed to cope with covering the patchy, thinning bits with wide Alice bands, then wore Baker Boy hats when I went out.

 I don't know whether diet had anything to do to help, but I also ate half a dozen eggs a week, in the form of scrambled egg etc, as I was told that eggs nourish the follicles.

If you can cope with the coldness of the scalp cooler, I would really give it a go!  Good luck!

 

Re: Hair loss

Thanks for that artemis.  It makes me feel much better and just hoping my cold cap has the same affect.  My hair if fairly short to start with so should be okay if my hairdresser can just trim a little every so often.  Hope your next 2 cycles go okay and then you can recoup and get back to enjoying life.  Take care.  Hugs.

Re: Hair loss

Hi There,

Im on cycle 4 of 6 xFEC-T and cold capping. Ive lost a bit each dose although its not been patches or clumps, more lots of strands.

 

So far its working although i have thinned a lot on top, its ok at teh sides, back and fringe, although im told you cant really tell i think its obvious... It is hard to face each time and does make the treatment longer, but im not having to wear scarcves etc so i think its worthwhile continuing.

 

Hair doesnt look great as you cant wash or style it, so really its whether you can bear a bad hair day everyday for 5 months, although im assuming once chemo is over, it will improve.

Re: Hair loss

I'm starting on FEC on Wednesday so obviously very interested to read comments on this.  I've already told my oncol that I would like to try the cold cap so will see how that goes.  At the moment feeling very apprehensive about the cycles so hoping the next four or so months go quickly.

Re: Hair loss

Hi, thanks for your replies about hair loss. Ive already started FEC so its too late for the cold cap now , but thanks for the suggestion. I was curious as to whether anyone actually manages to keep their hair through FEC without the cold cap. I've read posts from people who have already got fed up with moulting and had buzz cuts only a week or two in to treatments but nothing has happened at all to me in this regard yet, in fact my daughter is moulting more than me and shes not having any treatment. Any replies on this would be welcome please

Re: Hair loss

Hi Rollercoaster

I have just finished 6 cycles of FEC and used the cold cap throughout with success. My hair is thinner and very wispy as I haven't been able to blow dry it but I still have it!!!! My advice would be, if you can tolerate the cap then go for it. Good luck x

Re: Hair loss

Hi Rollercoaster,

I lost my hair 3 weeks after my first Cycle of Fec, was told from the outset by my Oncoligist it would happen. It was actually a relief as my scalp became sore x

Re: Hair loss

Hi Rollercoaster,

 

Have you seen BCC's publication on FEC chemo?  If not I've put you the link below and hope you find it helpful.  Don't be afraid to ask anything here the users of this site have a wealth of knowledge between them, plus there's also our helpline staff if you need to talk to someone in confidence, 0808 800 6000

 

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/fec-chemotherapy-bcc96

 

Take care,

Jo, Moderator

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Re: Hair loss

My oncologist blamed the taxotere rather than the FEC, if you use the cold cap. I have been in touch with Paxman, a cold cap manufacturer, and their research seems to song gets that up to 50% of people using the cold cap with Taxotere can still keep their hair, although I think the stronger the dose (I think it is 50, 75 or 100) the less chance there is of keeping your hair. I am going to try it regardless. The Paxman site does have a table with stats, with and without te cap, so worth aloof at. Hope this helps and good luck!

Hair loss

Just wondered, does everyone lose their hair on FEC? Are there any stats on this subject?