I’ve done 12 weeks of Paclitaxol and carboplatin and managed to keep most of my hair. I’ve now done two sessions (of four) ECs and my hair’s coming out in clumps. I’m so close to the end, but fear I’ll lose too much hair to not cover my head before I’ve finished. I’m now looking into wigs but that’s a whole minefield I’m not sure I have a) the bandwidth for, nor b) the time to get one. Anyone else experienced similar hair loss pattern and any top tips for these last 5 weeks of EC? It’s hard to see it come out everyday and not know where I’m going to end up.
Most people stuffer significant hair loss with EC. Only cold capping really helps. The loss tends to be 2 to 3 weeks after each dose. I don’t know if you can cold cap mid cycle, but might be worth talking to your breast care nurse about it. The only comfort I can offer is that usually it grows back pretty quickly. Wishing you a speedy recovery.
@fiona1980 That is exactly what has happened to me! I had 12 x Paclitaxel with 4 Carboplatin and then 3 x EC. Hardly any hair loss at all with PC, probably lost 50% during EC. My last EC was 5 weeks ago and I am still getting some loss now, although it has slowed down (perhaps yours will too?)….hoping it stops soon as I haven’t looked at wigs, and was hoping I wouldn’t have to 
I am sorry you are dealing with this - hair loss is so distressing. I had 4 docotaxel followed by 4 dose dense EC. I cold capped - and during chemo, though it thinned, I still had hair at the end and could get away with it if it was pinned up. However the weeks after chemo finished were the worst for my hair loss - I lost it all. I am told that cold capping helps with regrowth - it is three months down the line and it is growing back thick and curly ( straight before). Of course everyone is so different - and it does not mean it will happen to you. I just wish I had realised it was a possibility before it happened! I did buy a wig but have never worn it - preferred beanies / caps.
sending best wishes and support
x
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I had my 4 EC first (fortnightly) and was told cold capping had limited success with that regime. I tried anyway for the first 2 ECs but about a week after the second one it was just coming out in clumps so I stopped at that point and by the time I moved onto my paclitaxel I was bald. I don’t know if I should have continued cold capping to try protect my follicles but it didn’t seem worth the effort, especially as it added quite a lot of time onto my treatment. I also wanted to make sure the machines were available for anyone for whom it was genuinely working well.
I didn’t mind being bald. I wore soft chemo hats with funky scarves tied round them and got loads of lovely compliments. Got a NHS wig and only wore it twice! In many ways regrowing it is worse. It is coming back quite well but a lot more grey which could be due to follicle damage. Have you looked at Daniel Field products? I’ve heard good things about them.
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@eddiesmum Do you mind if I ask why you had only 3 ECs? Were you due to have 4 at any point? I only ask because my chemo plan was always to have four but then I ended up in hospital with neutropenic sepsis over Easter during which time my oncologist briefly mentioned reducing my cycles to 3 … however, she’s now saying I should do four unless my bloods are really low again at any point. However, the cancer hasn’t been visible on an MRI since February, so I’d much rather do only 3 ECs as I’m hating EC so much(!).
@fiona1980 That’s a good question! It was never in my plan to have 4 EC, and I asked my oncologist about that as I could see, on this forum, that most women seemed to be having 4 rather than 3. She waffled a bit and told me how hard EC could be on the body and said 3 would be absolutely fine. It might have something to do with age? I am 69 and my oncologist tried me on a 20% reduction with the first EC to see how I coped with it. Well, I had so much nausea, vomiting etc and so it was never increased to the full dose…I don’t think I could have coped with it.
As I had surgery first (although I am TNBC, my cancer was an Occult cancer, only in my lymph nodes, nowhere else), there is no way of knowing how well my body has responded to the chemo. RT starts end of the month!
I don’t blame you for not wanting 4 EC’s…..they were awful, but I wish you lots of luck with it all x
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@fiona1980 I’m not sure how reassuring I can be, my chemo treatment plan is 4 X EC fortnightly followed by 3 Docetaxel and Phesgo every three weeks. I’ve done 3/4 EC doses now and I’m due in for the last on Weds. I didn’t cold cap and by day 14 (so around the date of dose 2) I had pulled the trigger in a buzz cut because every bath or shower was so messy with shedding. I’ve got about 3mm hair across my head and it’s sparse, with some true bald patches here and there at ‘high traffic’ spots like the back of my neck. The speed it all fell out was quite startling. Now it’s so short any further shedding is much easier to cope with and harder to track, but I get a sore scalp for a few days which signals it’s busy trying to escape. There seems to be mixed experience on Docetaxel as to hair loss, but I’m hoping I might get off a bit lighter.
I’m in Scotland so qualified for a free NHS wig from the get go, and my BCN gave me the prescription upfront and I got it in time for the buzzcut. I’ve worn it out and about a bit but finding I’m more confident now. I also have a pretty reasonable £20 Amazon wig for slightly less ‘serious’ wear - it’s purple and wavy and has a fringe. Both are comfy enough though so dig in behind the ears after a bit, and take a bit of learning to drive. I’m also loving the look of scarves, worn with big earrings. Losing all my hair hasn’t been the greatest of fun but overall I think I am finding it manageable. And I feel an odd sort of excitement at the prospect of it coming back.
I’m sure others will be along with experience but do be kind to yourself, this bit is pretty emotional. Hugs.
It’s really encouraging to hear that in just a few months you have thick and curly hair growth. Ive always had long straight hair but I am a little bit excited to experience the chemo curls 
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How @fiona1980 the reasons for either x3 EC and x4 EC will be dependent on type of cancer/onco scores/age.
I am doing 4x EC because my cancer was particularly aggressive and they wanted to respond equally as aggressive. I am 39 years old (which is young according to them, I take that compliment) so they felt that this strong dose dense approach was managable for my body
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Hey @fiona1980 , my chemo plan was to have 4 cycles of EC & 4 of Paclitaxel. I’ve already had surgery , so this is classed as preventative chemo and they opted for the maximum number of cycles.
That said, we discussed and agreed to drop to 3 cycles of EC as the fatigue & nausea was tough going , that and factored in with a long road ahead of treatment - radiotherapy, targeted therapy, hormone tablets , my oncologist was fine with reducing to 3 cycles.
Ultimately, it’s your choice, you’re the one going through this.
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Hello,
I am on the same regime, but am only 4 weeks into the Paclitaxel. I have bought some wigs attached to hats that are really good and not too expensive off Etsy from headscarvesbyciara. They come really quickly.
I have also got a hair system from nchairtherapy, based in Huddersfield. It is expensive, but the hair you buy can then be used as extensions to attach to any remaining hair/anything that grows back. Check out their Instagram page.
Hope that helps xx
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I’ve been using the Daniel Field products. I think they help?? It’s hard to tell. In the first few weeks of paclitaxol / carboplatin, I hardly lost any hair - as in no hair at all whereas pre-cancer, I lost lots of hair every time I dried my hair and wondered how I continued to have so much hair on my head all the time 
. Oh how times have changed. But that’s fine. It’s not forever.
That all makes sense. I’m 45 with TNBC so I can see why my oncologist wants to give me all I can handle. She had to drop my dosage after the first EC cycle as I ended up in hospital with neutropenic sepsis so I suppose given the reduced dosage, my age, the TNBC and the fact that I can’t have immunotherapy because I have Crohn’s disease, I should embrace the 4 cycles of EC. My future self will thank me.
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@fiona1980 I worried about the reduction in EC, plus also only having 3 cycles, but decided they must know what they’re doing!! ….especially as, following RT, there’s nothing else for us TNBC’s treatment wise 
….lots of love and luck for the remainder of your treatment 
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Hi Treacle, hope you don’t mind me asking but would you mind sharing a ball park of the cost of the hair system? I start EC this week and have looked at JB wigs online and they seem to vary between £80-£180 per wig. I’m just wondering if I’d be as well getting a bespoke type system like you’ve purchased rather than buy two or three wigs I’ll never feel comfortable enough to wear?
FYI I’m not a million miles from Huddersfield so could make that work.
Thanks so much x
Hi,
The hair system was expensive- my parents have bought it for me. Depending on length, it’s between £800-1200, as it is made of human hair. BUT it can be used initially as a wig and then once your hair grows back a couple of inches, it can then be made into extensions and attached to it to give you hair of a suitable length. I thought this was a good investment as I will want to do that and it saves me having to then pay for separate extensions down the road. Niamh, the lady who does them, is absolutely amazing. I went to see her yesterday to collect my system and she’s just so lovely and understanding. She can dye it to be the exact colour of your hair xx
That’s so helpful 
Thanks x
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Anytime xx
As a FYI, it took about 5 weeks for it to be ready from the initial consultation, as my colour had to be made from scratch as it wasn’t available at that point. Just in terms of timings for you xx
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