Hi all, I’ve just completed E-CMF regime and used the cold cap for the epirubicin. Although the CMF can cause hair thinning, the nurses and onc said I wouldn’t need to use it as hair grows back on this regime. I had a couple of bald patches with the cold cap where it didn’t fit but the hair has now grown back and doesn’t come out.
The problem is, with the hair that I kept with the cap, is coming out-about 50+ hairs a day (I have counted!). Plus the hair growth during the chemo is visibly damaged along the hair shaft, it looks very thin and weak. Although I no longer wear a wig, my hair is in a short bob and I don’t look as if I’ve just had chemo. I’d like to know if others have had the same problem, as I feel by having the cold cap, I may have delayed having a nice thick (although short) head of hair for some months.
Hi Steph
I used the cold cap throughout 6 cycles of FEC. I was really lucky that I managed to keep most of my hair…just thinned on the crown but nobody else would notice. 3 months on, the thin bits don’t seem to be getting any thicker and, when I brush it, I shed a lot more hair than I used to.
I’m afraid I can’t answer your question, as I don’t know whether my hair will ever recover fully, but I just remain thankful that I was so lucky not to lose it all during treatment.
Sue xx
Sue - I had exactly the same. I also kept a lot of hair except a bald patch on top - and carried on losing quite a lot when I washed it for several months after chemo finished. It has now all grown back pretty much as good as new, and has finally stopped falling out. I finished chemo in April/May.
Hi, used cold cap during fec/tax, lost unfortunately most of it, but after finishing in July, it seems to be growing back now, but it’s not in any way like my normal hair. I also carried on losing it after Chemo stopped. Don’t want to think how long it may take to grow back just below the shoulders…
hi i am amazed at how many women have a bald patch on top after using cold cap i have also and thought i was the only one although lucky to have kept around 65% of my hair. although thin i have used boots spray conditioner for thining hair and the shampoo i think this has helped a lot. and lets not forget everyday we lose 50-100 hairs we just notice the loss more as we are wanting our hair back to normal. xx
Hiya - Like Tina, i lost approx 80% after using the cold cap. Last chemo was mid May and have now probably got about an inch and a half of very thick, quite wiry hair. It started off quite fluffy and fuzzy but definitely thicker now.
Lynn
ps its a complete sight by the way - just in case you didn’t catch the drift, but yes at least its hair.
Thought I’d post an update to say that my hair has ceased falling out, the fallout quantity seems more normal, although the hair that does come out still looks damaged. Also new hair has grown in between so my scalp isn’t so evident when the wind blows! Hair still looks thin though, and I may have it cut to a shorter style in the future to help even it up. But oh! How many years will it take to get back down past my shoulders and be strong enough for a light perm to get that trendy tousled look?
Hi Steph, I had it trimmed twice so far to get rid of the “dead looking” bits and it’s definitely getting thick now and growing better! I used products from DS laboratories for regrowth to massage the scalp. X Tina
Hi All,
I just noticed your comments and was interested to hear that some people still lost quite a bit of hair with the cold cap.I’m starting FEC in a weeks time and was initially sure that I would try the cold cap. Im wondering now whether to just not go ahead with the cold cap if I feel i still will have to wear a wig. Is the discomfort of the cold cap worth it? Would appreciate some advice.
Polly
Hi,
thought I would add what happened to me. I had the cold cap for just the epi of e/cmf (told hair would stay on cmf)and completed it in Nov 2008. I had a monks bald patch too but managed to never wear a wig by wearing the wide stretchy hairbands that were in that year. Wigs in the summer are unbelievably hot! My hair started growing fast as soon as the last epi was through and the bald patch filled in really fast as my hair is dark. The hairdresser persuaded me to have it cut really short, pixie style and put an organic reddish dye over it (while on cmf). It just transformed immediataly to a full head of hair albeit rather short. The dye was the biggest improvement. It was tough to have hair cut off but each time she did I actually looked like I had more hair! It has now become rather curly unlike my straight original hair which has been a fun change to try new styles. It has also come back jet black with hardly any grey. So on grey hair terms I have gone backwards at least 7 years, how does that happen? I would definitely have the cold cap again if I turned back the clock to how it turned out. It may be a coincidence but I kept my eyebrows and my eyelashes too, which are the parts that can make you look quite different.
I now have much thicker, wavier, darker hair after chemo and the cold cap. Not sure which part caused it but it has been an unexpected bonus. I would say have it cut short for a while.
Lily x
I finished a heavy-duty regimen, FEC100 x4 + Tax x 4, about 9 weeks ago. Also on Herceptin. Moulted while using cold cap and for about 7 weeks after, so it did thin slightly. Washing hair made it worse so I was very,very gentle with it. No bald patches. To be honest, it’s long and thick and you’d never know I’d had chemo.
I still treat it gently…wash it carefully and use a wide toothed brush etc… but the moulting is much less now. Lost a tiny strip underneath at the back and the new hair has started growing…bit like baby hair.
Eyebrows and lashes went. Boooo :-(. Eyebrows just now coming back. Lashes still sulking.
I am so very, very grateful that I still have hair. It’d have taken years for me to look like me again.
I would definitely use the Cold Cap again. Although my hair did thin on the crown, I didn’t have a noticeable bald patch. I was unsure about using the Cold Cap when I started chemo, but the nurses encouraged me to do so, and I figured that I’d know by the 2nd treatment whether it was worth carrying on with it.
Although it was quite uncomfortable it wasn’t as bad as I’d imagined and now I am so glad that I did stick with it. I know that it doesn’t work for everybody but its well worth a try.
I would say go for the cold cap. Although I still had the horrors of wig wearing, it has helped me to feel more normal now it’s all over. I would have hated the all over very short look that I would have now if I had not worn it. I found it just about bearable for the 4 times on epirubicin I wore it, but it has been worth it. The pic here is of me after chemo finished about 2 months ago. It has grown longer since.
I too used the cold cap throughout FEC and even though my Onc said as I had very fine hair it might not work and before each chemo he said ‘give it 7 more days’I kept most of of even tho’ as others have said a lot did come out on the comb. I only shamppoed once each 3 weekly cycle and used a very wide toothed comb to pat it into shape each morning.Interestingly I kept eye lashes and 1 eyebrow, one the Left lost a big patch in the middle and also lost everything south of my chin hope that is not TMI.Can’t win though can you as I got it firmly into my head that the chemo was not working and my BCN had her work cut out persuading me that it did not follow.Love Jackie
I’d 4xfec,4xtax.I had thick waist length hair and couldn’t bare to cut it short so I cut about 18 inches off and left it mid back. I wore the cold cap throughout and held on to most of it while on fec.(Even the chemo nurses were impressed) However I’ll never know if it was the taxol or the fact that I was attacked by a lunatic just after starting it, but I lost every hair on my body witin a week and it didnt grow back until after chemo. It came back very thick and white - and very quickly. I really liked my short white hair but it was growing so quickly I gave up and let it grow again.
Josie x
This is all really encouraging stuff. I’m on a randomised trial of carboplatin plus taxol x6 (every 21 days) with herceptin and its new sister drug pertuzemab. I’ve got my second session today. Used cold cap on the first and on day 17 started to moult. Not exactly coming out in clumps, but multiple strands. Surprised how distressed I was initially, especially as I’d already had my long hair cut to chin length in prep. Is this likely to continue at this rate? Will use the cap again today but will get a Suburban Turban ordered just in case it thins too much, I think.Seems to be going on crown and underneath at back/ears.
Pinchy xx
Thank you to everyone who wrote on this post years ago. It is just what i needed as i am īn a similar situation with my chin length bob. I sucessfully cold capped through 3 fec and 3 T. I lost nearly half my hair but only had a tiny bit of balding along my parting which was not noticable to others unless they were looking closely. I was so relieved that i mananged to keep my hair but it is still falling out just as badly 6 weeks after so it was great to find this post to let me know when that might stop - hopefully in the next few weeks or maybe a few months. Definitely thinking of going for a shorter style in a few months time when some of the regrowth is longer.
Can’t decide when it might be safe to use a hair dryer as at least that would make my thinner hair look better. Does anyone have any advice / experience on when it is safe to use a hairdryer post chemo with cold capping?
