Hi there,
I was wondering if you could share your experience with cold capping with EC-T or AC-T with regards shedding.
I am interested to know when you change to Taxol does the shedding slow or stop?
I am due by fourth AC. I have had shedding from day 26 which has continued with a small hand full of hair every day. So while I am doing well I have a long road to go and if it continues at this pace I won’t have any hair left at the end. Love to hear how everyone else getting on?
Thank you!
Hiya, I had 4 x EC and have done 3 taxol, so 9 left to do. Still cold capping and although I lost two third of my hair with EC it seems it has stabilised. Hopefully it will continue like that !
Everybody is different and in my case I unfortunately was not fitted properly at my first EC, the nurse hardlybwet my hair, which caused most of the loss 2 weeks later. I am now hopeful I will keep what is left for a bit.
Take care
Marion
Thanks! Best of luck with the rest and good to hear that it has stabilised.
I had a massive amount of shedding with EC and it hasn’t seemed to slow down much since switching to docetaxel. I’ve barely got anything left on top to be honest, but I’m going to stick with it for my last 2 docetaxels so I can hopefully miss out on the permanent alopecia that can be a side effect of the docetaxel. It’s frustrating tbh and I’ve had to mute the paxman group on FB since people keep posting about their great results on the same regime and it makes me a bit angry that I’ve got the short end of the stick.
I am very sorry to hear this. That’s hard and what I have been told is the cold cap is hit or miss. They don’t tend to know why it works for one person but not another. However it is meant to really help with the re growth for all. I find the hair loss the most traumatising thing about chemo. Hope your treatment otherwise is going well. x
Hi, like yourself I lost about 70% of my hair whilst cold capping, but although I was still shedding for 3-4 weeks following docataxel I also had the beginning of regrowth before my last 3 weekly docataxel. I don’t have any bald patches on my head now but I do have one in my pubic area. Sorry if this is too much information but I wander what my head would have looked like if I hadn’t cold capped!
I completed my treatment of a double mastectomy followed by 6 sessions of ECT chemotherapy every 3 weeks and then radiotherapy last year and I want to share some advice with anyone about to start chemo.
PLEASE DO NOT CUT YOUR HAIR short
PLEASE USE THE COLD CAP (do not be put off using it by the hospital ) I have mid length hair and the managed to save around 60/70% of my hair and yes it thinned all over but there were no bald patches.
Please wet hair beforehand with a conditioner and ensure cap fits properly touching your skull all over top and hairline it’s the freezing on the skull that stops the chemo reaching your follicles. Yes I lost hair most weeks but it thinned not fell out in patches. There are no guarantees I know it might not work for everyone, but its worth a try my chemo was a harsh ECT (docetaxel ) and yet the cold cap worked for me
I bought 2 wigs and many hats / scarves expecting to lose all my hair but instead at times my friends could not believe I was so ill. It helped me get through what was it a difficult time, its bad enough having the treatment feeling ill, let alone having to see yourself in the mirror everyday without hair.
Having successfully kept so much hair I didn’t wear my wig once or any hats/scarves
I cant tell you how much it helped me to keep a positive attitude Having finished treatment in July 23 my eyelashes and eyebrows were back very quickly and better than ever and my hair is growing back strong too although a little more grey and I looked like I have ahas 70s mullet with new hair growing out on top. But it’s growing well now.
LIke others on ECT, I had sickness for 5/6 days and severe tiredness as well as joint pains and changes to my appetite but it does all pass and my 3rd week just before the next dose was always a good one. I walked everyday however slow or tired, or short the walk was, my husband was there for support along with my dog Barney (who clearly seemed to know i was not well and sat by my side rather than jump on me )
I attach a picture of my and my husband, this is my hair one week after my last dose of chemo I had lost my eyelashes and eyebrows but kept alot of my hair.
Happy to share more of my experience if anyone’s interested
Good luck to everyone out there, its a difficult time, take it day by day, listen to your body. There is light at the end of the tunnel so grateful to all those who have helped make the treatments today so much better than they were in the past.
I have 8 sessions and am due my 4th EC soon before going onto Docetaxel. Did you find one worse than the other for shedding or both the EC and Docetaxel similar?
I found that my hair shed a little more as time went on but that might just be the build up ie more chemo in body as opposed to the T element starting. Sorry can’t be more specific it was same with nails.
I also had some neuropathy in my toes/feet and used pillow under my feet at night to take heels off the mattress.
Thanks for sharing and the lovely pics.
I bought mitts and gloves to prevent neuropathy however having been through the latest cold cap and being so cold I won’t be able to stomach the cold on feet and hands! Finding it so tough to cold cap as pressure on head is so great and I feel nauseated throughout. That said my results are good so far so for me it’s worth it and I already have regrowth that is filling in some spots despite it being shorter.
So your tip on raising feet is great!
There is some evidence that shows that compression garments have similar results for PN to the cold mitts for the hands and feet, so maybe it’s worth trying if you’re not great with the cold. I’ve used compression socks through my whole treatment so far and only have a tiny bit of tingling on the outside/top of one foot.
Great tip thank you will try this instead!
Hi,
I did 3 EC & C and her shedding from the 1st cycle. Just done 3rd Docetaxal and it’s pretty much stayed the same throughout.
I chose not to shave it off as many seem to do, but cover my hair with turbans, scarves and hats because to me it feels super thin, although everyone tells me you can’t see my scalp.
I just don’t want to deal with it each morning so just cover it up. It’s also super dry like a fluffy dandelion !!!
Because I’ve got the fringe I feel there’s more benefit in keeping it than shaving it.
I also wear compression socks x
Thanks for sharing and lovely pics too! 
Can I ask do you mean the shedding stayed the same throughout or did it get lighter with the change in chemo treatment?
I think it’s pretty much stayed the same throughout. I think cos I started off with thick hair I haven’t had any bald patches so far !!! When I wash it I have to blow it off my legs with the hairdryer !!! And I hate emptying the shower trap and the hoover , cos it’s all inside !!!
But for me shaving it off was worse so just went with the covering it up option. Personal decision I guess x
My shedding started just before my second EC, coming out in clumps & hair on my clothes. Just had my third EC & it doesn’t seem to be shedding as severely. Due Paclataxol in 10 days for 9 rounds , like you I was wondering if this will effect hair loss the same. I am cold capping, but to be honest struggling with it, trying to persevere as you can see my scalp through my hair on top of my head.
How is your hair loss journey up to now SL255 & Vibby as I still have my fringe too so hoping not to shave ? 🩷
Just an update for me, I’ve now had my last 2 docetaxels and noticed after the second to last one that I had some regrowth appearing on my bald patches. Now that I’m 2 weeks PFC, I’ve got almost 2 cm regrowth which is promising. It’s very light and fluffy but I’ve got good head cover.
@willow.1 if it has slowed down that is a good sign as for me once I started shedding the same came out every day but bit heavier now on paclitaxel however I am on dose dense every two weeks and I hear weekly is better.
I am also seeing hair growth underneath. If you have patches and I am at that stage now where they are starting to be a bit more visible what you can do is if you have longer hair you can move the parting to cover or at least try and cover where you can. Other product I have not tried yet is hair fibres lots of different brands out there such as Daniel Field or Keratin I believe is another one that are designed to work with chemo. I have used DF hair growth active too which is good for the week before chemo. I didn’t want anything to affect further hair loss unless I was going somewhere but seems like the fibres are a good solution that can help patch things up. I would keep going with the cold cap if even for the regrowth! I will not lie I hate the caps but I look at it as one day and try and concentrate on the positives.
One other thing that someone said, is concentrate on the hair that’s on your head and not on the hair that’s in the sink. I definitely find it easier to comb once a day rather than have it falling randomly in different places which is a lot more traumatic.
Hope this helps!
