EC chemotherapy and hair loss

[Tarnia]

Hi
Yes I’m using the cold cap, was ok the first 2 times but struggled last week made me feel really sick. I’ve had 3 FEC now and whilst I’ve nit had to wear my wig yet I have lost a considerable amount of hair - all from underneath so just about getting away with it!
Start the T part of my treatment on the 18/10 and dreading it! Think I need to stop reading about everyone’s side effects 🤨

[Xxxx]

Tarnia-did you try the cold cap?

[Tarnia]

That’s so good to hear after everything I’ve been reading! I think I just need to get started all the waiting is agonising!

And I would love to lose all the body hair too just not the hair on my head.

Thanks again it’s nice to hear from someone positive.

[SallyG63]

Tarnia honestly it's not that bad. I've been working all though it, just missing chemo days. Ive had no real side effects. No sickness or anything. Take the sickness med they give you and you'll probably not get sickness at all. I was completely knackered a week or so ago but that was during the really really hot weather which was a huge factor as well as me being insulin dependant diabetic which is affected by heat. After a few days of cooler weather I'm back to normal again. I did unfortunately get a dvt in my arm but again that's not something a lot of people would get. Because I had a node clearance too it means they can only use one arm which then takes all the punishment but it's fine.

Oh and as for hair, I still have to shave my legs, how unfair is that. What I want gone is still hanging on!

[Tarnia]

Can I also ask how the chemotherapy affected you? I read some real horror  stories last night and frightened myself to death 🤨

[Tarnia]

Ok, thanks for the advice. Fingers crossed it will work for me to.

[SallyG63]

I just use whatever in the bathroom. At the minute it herbal essences honey shampoo and conditioner.

Also try not to fiddle with it and just use s wide toothed comb when you have to comb it.

[Tarnia]

Hi Sally
I’m so glad it’s working for you and I’m definitely going to give it a go. Can I ask what shampoo you’ve been using?
Thanks

[SallyG63]

Hi Tarnia,

With the cold cap just wash the hair in tepid water once a week, pat not rub it dry. No hair dryer or straigteners .

I've done EC and one T and so far with the cold cap have lost little of it. There a little bit of shedding but if you didn't know me you'd not notice anything. When you use the cold cap for the 1st time it is the worst brain freeze ever for the first 15/20 minutes and quite painful so make sure you have a distraction. After that it gets a lot easier to the point where it doesn't hurt at all when it goes on. In fact, in today's 32c temperature it was quite welcome.

Good luck if you go for it.

[monicanatura]

Hi
I was diagnosed in May with Ductal carcinoma, started EC 6 weeks ago, hair started to fall out a week or so after, Iv just been to the hairdresser for a shave all over. Very liberating.
It can be traumatic to have your hair cut off, however I think it’s a lot more traumatising seeing your hair on the floor and blocking the plug hole.
We are all on this journey together, good luck on yours ladies and Gentlemen. 😁

[Tarnia]

Hi

Reading your post has given me hope. I’m about to start Chemo on 16/8 3 Fec  and 3 Taxotere. I’m also going to try the cool cap. Do you have any tips and how have you looked after your hair. 

Thank you

[minniem]

I am now wishing i had tried the cold cap, I was advised not to by the nurses and oncologist as I would defintely lose my hair.......that hasnt been the case so far

On 4th FEC-T cycle now and ok my hair has thinned to very little and i do need to wear a wig but I didnt lose leg or underarm hair and I am still waiting for the brazilian i was promised to materialise . Maybe I should have taken the gamble 

[Daisy200]

Hiya. I've done 5 cycles now with the cold cap and I haven't lost any hair, well certainly not noticably. I've done 3 FEC and 2 T's, last one on Thursday, so fingers crossed I'm not going to shed the lot on the last one. On Fec it's 30 minutes cold cap before the drugs and 90 minutes afterwards, on the T it's 30 minute before, but only 20 after. And make sure you properly defrost before you take it off, or you'll rip it all out anyway. Good luck chick x

[Minksy]

Do you think it is worth having cold cap and how long is the treatment if you have it. I read it takes an extra hour before and after treatment and you can still loose your hair.
What do you think x

[Minksy]

I am due to stary 4 EC chemo sessions in a few weeks. Not sure if i should try cold cap. How much longer is the treatment if you have cold cap. Really anixious.
Have bought a wig, hats and sleep cap. Xx

[Angie pink65]

Hi Sue sorry for late reply .. I have brought a few wigs , well my hubby bless him ordered me a few cheap ones of eBay .. I think he wanted to make me feel better bless him , but I have also had one from the hospital a nhs one. . Which in my area you have to pay the first sixty or so pounds .. I have also brought some head wear for around the house which are really comfortable. . Will be thinking of you when you have your hair cut let me know how you go on hun xx 😘

[Lumpytits]

Hi Sue, I had my hair cut very short the day before my first chemo which was two weeks ago. I have come up to Wales for my treatment staying with my sister. Her hairdresser saw me at the end of the day so there was just me, it was a bit emotional at first but then it was ok and he did a fantastic cut, he was very caring and sensitive. It's very short, crew cut on side and a bit longer on top, spikey, but it's so easy and I like it. It's not being vane atall, I'm getting quite anxious as I'm now on day 14 and believe, from what I've read, I could start losing it from now. But it will grow back. I'm not having a wig I'm going to try hats, scarves and embrace the new looking me.....well that's the plan😃 All the best, Linda xx

[Sue124]

Hi SueC

thanks for your support. Decision made... I've bought a magazine with lots of short hairstyles in and, even though it will probably only be for a few weeks before I lose the rest of my hair, I'm going to a hairdresses and have the bulk cut off for the childrens' wig charity, then styled short. I'll probably keep one long ringlet for old times sake!  I'll take my partner to the wig shop and have another look.

Thanks again, good luck with you own cancer journey.  XXX, Sue124

[Sue C]

Hi Sue

I too had long hair before chemotherapy and decided to get it cut short before treatment began. It was a very difficult decision but in the end a good idea. Once cut, it looked surprisingly OK and once my hair started falling out, I was glad because it did shed everywhere and made such a mess. I didn't have the courage to shave it all off, just resorted to scarves ( wigs weren't for me). And it didn't all fall out. 6 months after chemo, my hair is pretty much as it was when I got it cut ( although a little curlier!).

I don't know why we have such a hard time about losing our hair, we just do. But just remember its such a short time out of your life and, I know everyone says this, but it will grow back. I'm living proof!

Sending a hug x

[Sue124]

Hi Angie, many thanks for your reply. Today is the first time I've been really down. Even during my hospital visits I've had  laugh and a joke but I suppose it had to hit me sometime. Thanks for suggesting the Littlle Princesses charity, I've sent them an email asking if they would like my hair. It's so curly I used to ge called Shirley (as in Shirley Temple) and am not sure a wig maker would thank me for the challenge!  However, if they say yes then I'll have it cut this weekend. As you say, it's putting it to good use..... not just a negative for me to cry about. I've also decided to have a few professional photos taken, just to remind me / give me a target to aim for. Bit of a challenge today. I'm popping into work for lunch with a few colleagues. I feel I need to be positive and cherry but am at my very lowest. Got some good friends there so will be supportive but still want it to be normal, not focused on me.

Thanks again for your support, you didn't say if you'd got a wig.  If you did, did you sort it before you shaved your head?

XXX Sue

[Angie pink65]

Hi Sue I felt exactly like you about my hair which was long .. it very normal to feel the way you do its a very emotional time for you and your family and we all cope in different ways ... I don't know if this helps at all , but what I did was had my hair cut into a bob first and the hair that was cut I donated it to the princess trust to help children going through the same thing . This really helped me as I felt my hair was helping others 11 inches I donated and yeah my hair wasn't wasted after having long hair for nearly 50 yrs ... it is emotional time loosing your hair and no your not vain at all ... I just had my second chemo and have 4 more to go shaved my head last week ... I now feel relief that I shaved it in a strange way as I haven't got to bother doing my hair .. I hope this helps and wish you all the best in you jorney with the chemo xx stay strong beatiful lady xx 💟

[Sue124]

Hi,

I'm starting my EC chemo next week.  I was diagnosed in December,had a lumpectomy in Jan and a shave in early March but will be having a full mastectomy after chemo. I thought I'd got my head around having cancer but am dreading losing my hair. Although I'm 60 this week I feel like I'm in my 40s and have waist length blond very curly hair. I'm trying to be prepared so booked a session in the local nhs wig shop last week and the lady had a look of horror on her face when she saw me. She was really kind and helpful and admitted she was scared I would want a wig to match my hair. I tried one wig and had to leave and have hardly stopped crying since. I hadn't realised how vain I had become about my hair and feel guilty about being so focused on cosmetic issues.

I feel I should have it cut short to get used to having less hair before it falls out - I'm having cold cap but my hair is so thick I doubt the coldness will actually get through to my scalp much so no longer have any real hope of not losing it. I've walked past several hairdressers but can't find the will to walk in. It feels somehow like giving in.

I'm not sure what, if anything, I'm asking of the forum but my partner gets upset if I do so just writing this to get it off my chest.

Best wishes to anyone who reads this, Sue

[pate1]

Hi

I am on EC and although I tried the cold cap my first major hair loss started about 20 days after my first chemo. I don't use my hairdryer now preferring to let my hair dry naturally.I just have to touch my hair and a few strands will fall off.Will keep going with the cold cap though.

[MotherofdragonsX]

Hi All,

I started chemo in October last year and did the Taxol first (12 weeks once weekly). I used the cold cap and had very little hair loss at all. No real side effects either and managed to get on with life and feel pretty positive and happy.

Started with EC 7 weeks ago. The first session was ok, had nausea and constipation and went off a few of my favourite foods (I loved salmon, cant even stomach the thought of it now!!) I lost lots of hair on days 17 to 20, but was blessed with a load of hair initially so still have some hair, even though its terribly grey now i worship the l'oreal  spray colour in the turquoise containers - its amazing stuff 🙂

This second EC one has been much tougher, feeling really grotty week one after the treatment - have the marrow boosting injection too, which gives me horrid leg pains. I went off and got myself a wig, as i was stressing so much about the hair loss, but the lady at the wig place and the chemo nurses appear to think i might keep enough and its in chin length bob type style.The hair has carried on falling, but not  quite as badly as in the weeks after the first session.

My hair has obviously thinned out all over, but i have no bald patches at all (using the Paxman machine). I have thinning eyebrows, and no lower lashes, and have lost half of my top lashes on both eyes. The lack of 'fluff' on my face and body makes me feel 'dirty' - but i'm sure thats me just being rather freaky 🙂

Wishing love to all xx

[Butlerk3]

I agree and am considering the same

[Butlerk3]

Not the cold cap being uncomfortable the hairloss

[Butlerk3]

Hi my hair started to come out end of second week after my first chemo. I was referred to the wig dept following my treatment consultation as they knew it would be quick. I have a wig ordered and have a couple of scarves in preparation but to be honest I don't think you can prepare for the amount of hair that comes out x I used the cold cap and will give it another go next week but it is so uncomfortable I think it will be best to shave off andcresugn to the wig x good luck hope it goes well for you x

[msmcann]

Think they prefer you to order one but if you were able to give a donation then don't think they would mind.

[hopalong]

I had EC 8 days ago and cold capped, washed it for first time today no chemical/paraben perfume shampoo ,patted dry not rubbed and left it to dry naturaly. I was surprised that there was not much loss. I have been told that it is mainly between days 10 & 14 of each cycle. My chemo unit gave me a towelling turban to wear, with the words you will need it as when/if you start to shed it gets everywhere. I have already chosen a wig should I need one, I found it easier to do this before the event so I felt more in control/planning rather than reacting to.

I have decided for me personaly I would rather loose all my hair than have patches that were completley bald or very thin, with good hair growth around as I would still feel the need to cover up. I am currently thinking that I will cold cap again (as didn't find it too uncomfortable) for second cycle and then reassess before remaining cycles.

Will keep an eye on this thread and post my findings.

[deelush]

These hair pieces look good, would you happen to know if you are allowed to order more than one piece, many thanks

deelush

[msmcann]

Hi

My hair started falling out after my 1st FEC cycle. Although the NHS provided me with a wig as I didn't have thick hair to start with, I found the wig pretty alien. I was so grateful when I came across www.heathershair.co.uk which provide real hair on a sweatband to wear under a hat or scarf. I wore  my HH weave the whole time as it gave me enough hair but didn't make me feel uncomfortable. I wish you you all the very best and find a manageable routine.

[SamanthaL]

Hi Polly Emma
My hair def went after the 2nd cycle.
I cut it short before hand, and then trimmed the little clumps that remained.
Last chemo on Friday, and lo, little bits are growing back. V weird.
I have eaten ice cream soft fruit and mashed potatoes with brown sauce not together mind you.
The steroids really helped, but I put on weight. ( quite a bit sadly) Sweet things are the only thing I actually like to eat, I suppose!
Oh and I got to enjoy my long and glamour wig.

[SamanthaL]

Oh, and I have really got to enjoy, my long very glamorous wig!

[SamanthaL]

Hi Polly Emma
My hair def went after the 2nd cycle.
I cut it short before hand, and then trimmed the little clumps that remained.
Last chemo on Friday, and lo, little bits are growing back. V weird.
I have eaten ice cream soft fruit and mashed potatoes with brown sauce not together mind you.
The steroids really helped, but I put on weight. ( quite a bit sadly) Sweet things are the only thing I actually like to eat, I suppose!

[SML1903]

Hi PollyEmma. I finished my FEC-T chemo 3 months ago and started to loose my hair after a few weeks even though I used the cold cap so didn't use it after that. Then after the 2nd cycle it started to fall out in clumps and I had to start wearing my wig. I used simple shampoo and conditioner and just let my hair dry naturally. Mine didn't start to grow back until recently and is about 1/4 inch long now so still wearing my wig. Everyone is different though and as you can see from the posts hair regrowth differs from person to person. Good luck with your chemo and the rest of your treatment. I have nearly reached the end now with just radiotherapy to go. It all seems very daunting when you first start treatment but there is light at the end of the tunnel. x

[PollyEmma]

Try hobnobs. I've found nibbling them very helpful. Can't stand haveing empty stomach

[PollyEmma]

I'm not doing to bad. Managing to eat just exhausted. Haven't been sick. What meds you on. I'm on these funny new capsules. Dexesamethasone, metoclopramide, and ondansertrone.

Best of luck

[remel]

Hi, I also had first chemo on Thursday and am wondering the same.  How you feeling?  I am taking all the anti sickness drugs but still feeling queasy (and have been sick a few times).  Its difficult to know what to eat. Have had porridge and a banana so far this morning, it has stayed down - so far!

[deelush]

Hi PollyEmma,

i think eveyone reacts different to chemo and everyone's chemo regime is different but average hair fall seems to be from about two weeks onwards, i was lucky in the fact that i still had a lot of hair after my second round of fec treatment and only shaved it off the week before my third as i had gone very thin at the front, the back still had a good covering, my hair remained as stubble after this then dwindled down but by the time i was on the second half of my treatment the t part it was already growing back, i'm just two months out of chemo and have about an inch all over thicker at the back but its growing so you never know, just be aware when it does start to fall it gets everywhere and you'll actually be glad (trust me and i never thought i would say that) to shave it all off, and it helps to take the soreness out of your scalp as it does become quite tender when the hair falls, hope that helps and good luck. 

P.s.only wash when you really really need to use a gentle shampoo and dry very gently on a cooler heat or allow to dry naturally and you'll manage to hang on to it for longer 😉

deelush

[PollyEmma]

Hiya.

I had my first ec treatment on Thursday. Was just wondering if anyone had any idea when my hair will start to fall out.
Thanks