Hair Loss - options?!

Hi Ladies,

Well, my mum's 6 month check up showed that it's back, so fighting gloves back on... This time, they'll probably use a combi drug - the side effect of which is hair loss. Can I ask, do any of you know if hair loss is a 'definite' side effect, or if it's a 'possible' side effect? Also, assuming she does lose it, does this happen right from the first treatment? And lastly, if you don't mind me asking, have any of you gone for a wig option?! You see, my grandparents don't actually know that my mum has cancer - she managed to hide it last time as they're very old and considerably frail and she wanted to spare them the shock... obviously it'll be harder (impossible!) to hide if she does lose her hair. If any of you have experience about wigs, I'd most appreciate any leads of good suppliers....

I hope you're all having a good day today, and thank you in advance for the feedback :-)

Angela xx

43 Replies

  • Dear Angela

    I'm sorry to hear your mum has relapsed. I'm going through the consultation process before starting a second line of chemotherapy. I wonder from what you say whether your mum had only single-agent Carbo-platin last time and this was the reason why she didn't lose her hair. Generally they advice a dual agent chemotherapy and last year that was Carbo-Platin and Paclitaxol. Some hospitals this year seem to be combining Carbo-Platin with Caelyx and this is currently being considered by NICE.

    I didn't lose any hair with carbo-platin and I'm currently looking at options if I have Taxol. Some hospitals offer a device called a cold cap which patients wear on their head whilst receiving Taxol. This can prevent or reduce hair loss on Taxol. It works for some women but I'm aware my hospital, for instance, doesn't recommend it for patients who are receiving their Taxol every third week.

    If the new combination is carbo-platin plus Caelyx there can be some thinning but no drastic hair loss. This was something my hospital discussed with me and it seemed to be an option if hair-loss was important to me. I can't speak for your Mum's hospital but it's worth asking about that combination if she is worried.

    I'm currently looking at wigs and I was going to post up the contact details of a hair stylist I found in London who will cut a wig. Mine costs £62 from the NHS and was supplied through the hospital's appliance service. We arranged to meet for half an hour for me to choose the one I liked best. My previous NHS gave me a voucher for £100 to be spent in a wig shop of my choice and I found a great selection in Cardiff at Salon Wills. Both hospitals gave me a list of wig suppliers but they weren't allowed to recommend one above another. It's worth going along with your mum as it can be quite upsetting even though in the two salons I have attended the staff have been wonderful. They've made a private appointment and have made it feel a bit like a make-over. It's important to have a good look round as the difference between wig suppliers is enormous.

    The hair salon that has a wig stylist is Athertoncox, 18 New Cavendish Street, London, W1G 8UR

    Phone number 020 7487 4048. The person to contact re wig cuts is Tyron. I'd imagine he may be prepared to recommend a good place to buy a wig if your mum is looking for one.

    I was meant to start chemotherapy yesterday - Taxol and Carbo-platin. I've been told hair starts to fall out 10 days after the first treatment so I'd booked a hairstylist to cut my hair really short so it isn't so distressing when it starts to falls out and it'll be easier to shave off when the time comes.

    I'm considering all sorts of looks for my bald head - hats, scarves, clear lens spectacles, hair bands, etc. Yesterday I met a lady with no hair at hospital and she looked absolutely wonderful. She had stuck 3 little jewels from Claire's Accessories up the back of her head and was wearing some jewellery that is designed to fit on the ear. I'm quite fascinated by it all and have collected together loads of photos of bald women to see how to manage it as I can't see myself pulling on a wig just to open the door to the postman.

    I'm sorry this post has become rather long and rambling but you've asked a question that's really interested me recently so it's nice to share my experiences so far.

    I hope your mum is OK. love Annie xxxx

  • Hi Annie - what a wonderful reply, thank you. Yes, I think mum will be having taxol along with the carboplatin this time - last time it was just the latter. Her side effects, whilst miserable, were nothing compared with what some women go through, so she's getting her head around the prospect that it could (probably will) be worse this time... she's willing of course to do what it takes! The contact details are very useful - I will have a tentative discussion with her about it again... we haven't actually seen the oncologist about moving forward yet - the results were given to her over the phone with an initial chat, so it's good to hear that they will hopefully give us some avenues to explore too.

    I do hope all goes well with you and the side effects aren't too severe - I shall be sending you lots of positive thoughts and best wishes...

    Much love, Angela x

  • Dear Angela

    I'm happy to compare notes and commiserate with your mum. We might both be feeling rotten at the same time and it's good to have company to have a little moan. xxx love Annie

  • ...sounds like a good idea! She's due to start next month but we'll no doubt get that confirmed at the appointment next week. Meantime I will try and convince her to get on this site! xx

  • Not all women are confident with IT. That's the real drawback of an online support site. I'd be happy to give you my email or telephone number should she just want to contact someone. xx

  • btw I start chemo next Tues 29th Oct. I was dreading it but now I know I need it I'm actually relieved. I hope your Mum is OK. The onc has told me I'll feel much worse this time on dual agent. I'm a bit nervous not knowing what to expect. xxx love to you and your Mum

  • Best of luck Annie. Can only repeat what him indoors said to me when I was feeling dreadful on chemo. "If its hurting, it must be working." Keeping my fingers crossed for you.

    Love Mary xx

  • Love it Mary! In that case bring it on! Geronimo xxx

  • Hi Annie,

    Mum was supposed to start this Thurs but she's not been able to have her little op today so it's postponed now until Nov 10th! We've been told that this won't make any difference to the cancer so I shall just make sure she enjoys herself until then! As far as I can tell, everyone reacts differently to the chemo combinations - you might find it's no different to the first time... I can only hope that it's easier on you than you're anticipating, and in the same vein as Mary - hey, if it's making you feel really bad then just imagine what it's doing to those bad cells! I'll be thinking of you and sending my love. Thank you for all your support xx

  • Thanks Angela. Love and good thoughts really help xx

  • Sandra has had 6 lines of chemo over the past 4 years, ref hair loss see the following;

    1st line was Carbo/Taxol, complete hair loss due to Taxol

    2nd line was Cisplatin/Etoposide hair loss due to Etoposide

    3rd line was Caelyx/Carbo no hair loss at all

    4th line was weekly Taxol, hair loss

    5th line was Gemcitibine/Carbo no hair loss

    6th line was Caelyx, no hair loss

    7th line is Tamoxifen, no hair loss.

    You should be able to get a wig which can be styled to look identical to your normal style. Sandra would use hers for shopping but preferred a headscarf when at home or at clinic.

  • I love that you listed out everything you have gone through and the results you had with your hair. I finished my chemo of taxol/carbo and knew from the beginning that total hair loss was going to happen. I have often wondered what would happen with other drugs if I have to walk through the fire again. My hair is still in the early stages of growing out from ending treatment back in June. I have in the meantime 4 wigs that I like to change up my look with. Thank you again for your layout, very informative.

  • Thanks for the info. It's also good to hear about these different drugs - good to know there are plenty of options out there for recurrences. Mum was on carbo only last time so kept her hair... taxol only this time - starting this week so need to sort her wig asap! xxx

  • Hi Annie, curious as to why they don't recommend cold cap for 3 weekly taxol. Is it because yours is for a longer infusion time than mine ? My taxol is twice every 3 w , and runs through in an hour , smaller dose than singke dose every 3 w, but still have to wear cap 1/2 hr before and 1 hr after treatment so cap on for 2 1/2 hrs total With a 2 hr infusion of taxol this would increase to 3 1/2 hrs so not huge difference. Main discomfort is initial freezing, tend not to notice it much after that- might be worth double checking with chemotherapy nurses if anyone does use it for your treatment, I found the male oncologists generally rather dismissive of using it("why bother its only hair !" ) but chemo nurses much more supportive . Have a great wig ready, but she's still on a stand in spare room watching ! H xx

  • Hi Hilary

    I'm not sure what the reason is exactly because when we visited York's Magnolia Cancer Centre patients could opt to use the cold cap even if they had the longer infusion every three weeks. My hospital said this isn't an option. My oncologist is female so nothing to do with male attitude to losing hair. Given the choice I'd have opted for the cold cap but not too worried either way.

    Love Annie xxx

  • I asked about this at the appointment - we were told that it can be really uncomfortable and can give awful headaches so not something they encourage - would you say you had these side effects? Does it mean there's a chance that you actually won't lose your hair at all? xx

  • Hi, I've now had 11 treatments ,out of 18 and still have my hair as normal, its thinned a bit along my parting, but not noticeably to others. At this rate I hope to keep it, I have quite long hair .If it lasts the 18 w, then reckoned the top will thicken out quickly with new hair growth , and the length will still be there. It's a bit painful for he first 15 m whilst its freezing on your head, but after that just uncomfortable. No worse than the chemo itself, and fine afterwards. Couple of hours of discomfort seems easier to me than wearing a wig or scarf as I'm useless with hair generally .good luckxx

  • This is really really interesting - I'll definitely discuss again with mum! Thanks so much xx

  • Hi Angela

    Sorry to hear that your Mum has to undergo more chemo. When I lost my hair it happened after about 2 weeks but prior to me starting treatment the chemo nurses referred me to the 'hairdresser' who sorted me a couple of wigs. However, never managed to wear them as I have always suffered debilitating sweats and so couldn't tolerate them. Wishing your Mum, you and all your family the very best.

    Love Karen. X

  • Thanks Karen - good to hear that we can expect some options from the hospital about this then. We haven't seen the oncologist face to face yet - the results were given over the phone with an initial chat, so I might be jumping the gun a bit - just trying to gather some info to help mum get her head around things.

    Hope you are doing really well yourself, thanks again,

    Angela x

  • Hi Angela

    I lost all my hair on carbo/taxol. Before I started on the chemo I went to a wig salon. There is a very good one in Ipswich - the staff were very helpful. I actually bought a wig with long hair as they tended to be not so thick. My natural hair is quite fine. I then took my wig to my sister (who is a hairdresser) and she cut both my real hair and my wig in exactly the same style. This meant when I did start to lose my hair I was happy to shave it all off and start wearing the wig. I then wore the wig all the time as I did not get on with scarves on my head.

    Also do ask about he cold cap as mentioned by Annie. When I was on weekly paclitaxel this year I used the cold cap and it was fine. I didn't find it uncomfortable at all.

    Good luck and best wishes to you and your mum.


  • Hi Angela,

    Do ask about a cold cap- I'm on weekly carbo/ taxol regime for 18 w , getting taxol 2 out of 3 weeks and have been using the cold cap for the taxol infusions. I'm now on week 10 as so far it's worked, my hairs thinned a little but still got plenty and the regular freezing with conditioner on ( used with cold cap) has made it soft and shiny . The oncologists can be a bit dismissive about them ( ESP if they are male) but the chemotherapy nurses are keen to help you use them I've found, they smile each week I turn up with my hair still on my head !

    Good luck

    Hilary x

  • You have lots of good tips from everyone else......telling (or not) family is really tough under any circumstances. I have agonised about telling my mother on each occasion. If your grandparents really are old and frail, it's possible they won't notice your mum wearing a wig. The wigs are so good these days, she could just put it down to a bit of change of style. My father was massively incapacitated by a stroke when I lost my hair for the first time. It seemed to me he definitely noticed something different about my hair, but not necessarily that it was a wig. One other thought, I understand and respect your mum's wish not to tell.... but are you sure this isn't adding another stress to what's already a really hard situation? All the best to you both whatever you decide to do. Chris xxxx

  • Hi Chris,

    Well, she made a decision yesterday NOT to tell them. Her brother helped make her mind up too and they're in agreement that it might be very detrimental to my Nanna's health. The reason I urged her to think about it was exactly as you said - for the strain on her. She tries to pretend everything is ok and just the support of your own mum is of course invaluable. But she's made the decision now and just not having to deliberate any further is a good thing. We'll get a good wig and hopefully manage to keep it between ourselves! x

  • I'm sure it's a big relief to you all, especially to your mum, to have made a decision..... I've been thinking about you as I've been struck by how much more quickly my hair has fallen out with carbotaxol than it did when I had FEC. I was worrying about your timing and getting the wig. We're all different, and your mum might react differently to me, but I was having a lot of hair falling our within 2.5 weeks of the first chemo dose (3 weekly), I've now had the second lot and got so sick of the hair, I've cut it short and am having wig fitting next week. There've been lots of brilliant suggestions on here about how to manage the transition and a lot of women rooting for your mum. And you're right about what you said about families! I do hope all goes well for her and she doesn't find the treatment too taxing. I'm only just ahead of her with it if she does want a moan. Love Chris

  • Well her first chemo session is Thursday and the hospital hasn't yet given her the wig contacts... I'm doing some research of local places today mind you - no harm in that! So I hope she does have a few weeks before it's noticeably coming out... I'll maybe get an appointment lined up for early next week so that we're not losing any time! And thank you for the offer of a moan with her - I shall pass it on. I do hope it's going okay with you so far and you're having a good day :-) xxx

  • Sometimes they dont tell you about having a wig but if you ask they will give you a form, from your consultant and some hospitals have a hairdresser and a wig section in another room. If not the hairdresser will probably know where you can go. Do ask sometimes they think if you dont you do not want a wig.

    It is sometime different from hospital to hospital. on this advice.I had to ask with the 3rd hair loss.

    Regards Barbara.

  • I really agree with passenger's point - they weren't very forthcoming at either of my two hospitals and it's not necessarily top of your mental list when talking to the onc! I'd suggest ringing the CNS to find out how it works at your hospital - it may save some time. I was able to select my wigs to try before the wig people had received the referral from the clinical team. This also wasn't straightforward - the problem being that since any of the team could do it, they all waited for someone else! (I hope I'm not being too uncharitable). It sounds as if all your background work will pay off when it comes to the choice. Just been for my fitting with a friend and we had a real laugh - especially at the one that made me look like a 14 year old! My mum and I had a good laugh when selecting the ones to try too. I hope you and yours can too. All things considered, after the first couple of days, I'm feeling pretty okay.... lots of niggly things but not (yet?) enough to cramp my style too much. It does seem a bit odd with it being double agent, so let's enjoy it while it lasts and hope your mum has the same experience. Love Chris

  • Hi Chris, I've actually found somewhere an hour away - a wig shop set up by a lady who has had cancer and it sounds like a very one-on-one experience. I'm thinking of heading up there and having a nice afternoon tea, maybe with my sister too, so it's not all about the wig - mum does seem to be pretty good about it all at the moment though. I hope we can have a laugh as you did :-) Her chemo has now been postponed over 2 weeks, but what the hec - better to get the ball rolling I thought! Thanks for your response, and I hope, fingers crossed, that you continue well on the chemo xxxx

  • Hi there. Such great advice, as always, from the OC ladies. I lost all my hair very slowly on carbo/paxi. I still had some left after my 3rd cycle, but decided enough was enough and k got my hubby to shave it off. I got an NHS wig free of charge but went to wig shop and bought one. I then had it styled to my choice at the hairdressers. If your mum is told 75% she will lose her hair then my suggestion would be to have it cut short now! That way it will less of a shock to her mum n dad when she wears a wig - she can say she didn't like her new hair cut and it waiting for it to grow. My mum us 94 and has been with me all the way. It was a shock to her but she just kept saying "it'll be all right!" I don't know who she was trying to convince because my cancer us back and I am facing more chemo ending this month :(. I do wish mum well. Love Izzy xxxxxxx

  • Oh I am so sorry it's back :-( I cannot wait for the day that we see a true superdrug to beat this beast. All my best wishes are with you of course. I suggested to mum about cutting it shorter now, and getting a wig - just like you advise. I think she's going to do it... thanks for your response and all the very best for you xxx

  • Hi Ally, thank you for the response. I think she's definitely going for a wig as close to her usual hair as she can... and then she'll cut it short before chemo - perhaps even shave it as you say - and we'll leave the fuzzy bit (good tip!) xx

  • So sorry I was on.carbo/taxol. MY head also got very sore just before the hair came out. I thought I.was prepared emotionally but it did take its toll. I wish you the best and KNOW you will and years your parents.

  • Thank you :-) I suppose looking on the bright side it's only because we have such a loving family that we're all trying to protect each other so we are very thankful for that :-) Her parents may not know, but my dad, my sister and myself are all there for her every step of the way xx

  • Buffs are very good - you get them in outdoor shops. You can get thick or thin ones, and in fab colours and patterns. They are good for keeping head warm in the night too. And great for days when you just don't feel like wearing a scratchy wig.

  • What on earth is a buff?! Is it a kind of hat / scarf?! Sounds very interesting!x

  • Yes I left "tufty" bits of hair. Better for the wig to hold onto. My head wasn't sore but I can imagine the pain. When I finished my chemo I bought VATIKA coconut enriched hair oil. It's AMAZING!!!!! My hair has grown back thick and with volume PLUS THE CHEMO CURL lol. I also use ARGAN hair treatment, which is a kind of conditioner after washing. That's good as well especially as you have to leave it on for 10 minutes whist soaking in the bath :) With my next treatment I shouldn't lose my hair again, the onc said just thinning, so loathe to have it cut. I'll wait and see but will continue to use my oils. Good luck with the wig buying. Try loads on to get the best for mum. Love n hugs Izzy xxxxxxx

  • Right - I am making a note of the above oils and will put a ribbon round them for mum! Thanks for your help! x

  • Sorry to hear about your mum's recurrence Angela. Bit late in replying as I've been away in a corner of the UK where the mobile signal is best described as "intermittent".

    I loved my wig. My hair never looked so good. And a fair number of people thought I'd just been to the hairdressers as it was close to my own style - only better. Although no one actually wants to lose their hair, there are some perks. When feeling exhausted with other side effects of chemo, it was such a relief just to massage some shampoo onto my scalp and then pat it dry and slap the wig on. Job done. We had a wig lady in the hospital who usually visits with the wig catalogue when patients attend for their first chemo cycle. I missed her on my first visit but was able to arrange an appointment. I tried on a few different styles then my choice was ordered and I came back a few days later so that she could check it fitted ok.

    Wishing your mum the best of luck and love to you both.

    Mary xx

  • Hi - thanks for the response. Do you know, I wouldn't be at all surprised if my mum ends up feeling the same. Her hair grows so fast she's always complaining about getting it cut!! I've made an appointment at an NHS approved wig shop which looks lovely, so hopefully we'll get it all sorted so the pressure's off for when she starts treatment (which has been postponed until Nov 10th now). Hope all is really well with you xxx

  • Hi ,

    I also brought my wig at the hospital and loved it. I found it easier to pop it on when I didn't have a scarf on than washing and doing my hair. I found losing my hair ok somehow and have been really lucky that its grown back ok. I did have it cut short when I started chemo , as that seemed to make it easier when it started to come out. When it was really thinning and all over the bed and sofa I shaved it. My hairdresser said she would do it along with the wig and scarf service at the hospital but my husband and I did it together over the kitchen sink ! I brought one of those hair clippers that men use from Argos for £7.99 .I did need some nice woolly hats as my head was really cold at times !

    I felt fairly ok on chemo but tired and it was easier in some ways having no hair. I was also really lucky to go on a course on make up and looking good on chemo at the hospital. I actually can't remember what its called but it is available through lots of hospitals and did help me to feel more confident . Might be worth asking its its available for your Mum? I met lots of women on it in the same position as me and I must say that putting a bit of slap on cheered me up some days. I'm not great with make up and am the most low maintainance woman that you could meet.

    Best wishes to your mum , dy x

  • ooh, now that is interesting. I hadn't thought about a possible make-up course for her. Yes, last time she looked quite drawn so that might be a good thing to ask about - thanks so much for the pointer! I hope all is really well with you xx

  • I've remembered now its called Look good , Feel Better , most people had Breast Cancer . It was for women on chemo and I think maybe only for women who were going to loose their hair . It was a bit of a pamper and I got lots of free bees. Its a charity that does it and I would try googling it ! A very positive experience all round ...

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