Hi schmooley - did you cut your hair short before the cold cap? I think it is very important, especially of you have thick hair. I had mine cut to 1", and have had great success with the cold cap through 3 FEC and now 3 Doxetaxol. Had my fifth chemo this morning, and still have a full head of hair. It has thinned, but I’m probably the only one that notices. Mind you, I do find the cold cap has got progressively harder to tolerate, but seems silly to give up on it at this late stage, so will persevere for (hopefully) my last chemo in 3 weeks.
libby 2010 libby 2010 says on 24 Mar 2010 20:55
Hi I copied this from another thraed
I had been really anxious about hair loss to the state of emotional collapse what a wimpI was!
Look at posts on Wigs thread.However I am now post 3x MM not noted for hair loss but in my case not noted for shrinking the lump either in my case!
Hi Feemac and everyone did not get the job but at least my hair stayed on!Had 2nd FEC on Tues 23/3 had to see oncologist before. Good news was that my white bcells stayed ay a better level than with MM which was definitely not expected, but he says that I will need to have the GCSF injections that I have had a 3 day course for at day 5,6,7 after my previous chemos. No probs with that as I am able to give these myself.AND he was surprised that I still had hair and am still working full-time and am coping OK but I have to as I am on my own and cannot go off too soon on sick leave and use uptoo much of my full paid sick leave as I wiil need to save that for the surgery and rads.There is the possibility that after the MRI scan post 3rd FEC I may need Taxetere but on Tues he told me that we may bale out of chemo at that point’ (after 3 x FEC)and go straight to surgery, but I need to know that the chemo has worked. Otherwise why have I been through 6 chemos on a small Grade 1 lump with at least 1 axillary node ?LOL Libby 2010 [Report this comment | Edit comment]
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Sorry forgot to say I had cold cap with each of 2 xFEC so far v.uncomfortable felt I was going to pass out when 2nd of 3 caps went on but did relaxation breathing and it passed. Have wig lined up from Trendco.in London as I have very fine fair floppy hair and had been told this would not last. Only shampooed my hair 2-3 time between FEC 1 and 2. Also advised by BC friend of 5 yrs ago to try WELLA scalp shampoo and serum. Only bought this on Sun and used x1 but am told it is good during hair loss and when lost and when growing back LOL Libby 2010
I’ve had the cold cap on for my past 3 epirubins and unfortunately, my hair has thinned considerably, especially on the crown where I knew the cap didn’t make good contact with the scalp. I’ve now got to the stage where I’ve decided I won’t go out without the wig on as I feel it’s now more embarrassing to be seen with thin, greasy hair with a bald patch. Disappointing, but still better than being completely bald I suppose.
Will be starting on 6x FEC on the 8th April, they use the paxman cold cap, have cut my hair from below shoulder line to just above chin length bob. Been advised to use PH neutral shampoo (once per week) and no dyes, heat or other treatments whilst using the cap. Not bought wig but have some hats and caps prepared as have been told may not be entirely successful in stopping the hair falling out. Trying to be pragmatic about it all now. xxxTina
Hope it all goes well with your first FEC i am coming up to my third. The chemo nurses are lovely and very helpfull and put you at ease. I have went mad buying hats and scarfs and not even tried my wig yet just happy with the scarfs.
Lots of love
I am about to have my third FEC and have used the cold cap and it’s worked really well so far. I’ll be honest it’s not exactly fun, but for me it’s been totally worth it. I was very lucky to have really thick hair to start with and just before my second it started to come out quite a lot. It lasted a couple of weeks but seems to have really eased up. My hair is thinner but not noticable really, so I’m quite pleased. My nurse said to take a headband like a sweatband with me as it protects your forehead and ears while the cap is on.
Anyway good luck.
Hi, thank you, first ten mins were the worst but stuck with it, they gave me a wad to protect the forehead, I also have very thick hair so see how we go, nurse said by the end of the second fec we will know how successful it will be. Waiting to have a central line fitted now, the first fec burnt and blistered my arm which was the worst bit! I hope everyone is keeping their spirits up, I think the nice weather helps me at the moment to keep bright! xxxwarm hugs, Tina.
I am trying to make my mind up over the cold cap. Had first appointment today with onco and discussed briefly. Have any of you found real benefits as most of you seem in agreement that its not comfortable! I dont know whether to accept the hair loss! They have booked me one for first fec next thursday but I can change mind any time!
I have used the cold cap twice. On Fec I lost virtually no hair, on Tax I lost more but most people didn’t notice that it was thinner.
I didn’t find it uncomfortable, just cold, but it does make the process take a bit longer, 15 minutes before you start and 30-40 mins at the end. I tried to do stuff like make my next appointment during the time at the end so it didn’t seem too bad.
Here the system is very basic with “frozen swim caps” which need replacing every 40mins, some hospitals have more sophisticated equipment.
I used the cold cap, I had 3 FEC and 3 TAXOL, It worked for me, my last chemo was 24th feb, Hair went thin especially on the ends, but is starting to grow back.
I am having my first colour on tomorrow in over 6 months!! and will have hair extensions the end of may, the cold cap is worth doing, i personally didn’t find it uncomfortable, when I was having taxol i had to wear it for 5 hrs, because it was a slower infusion, but it was well worth the time.
take paracetamol and drinks lots of water, wash hair once a week in a gentle shampoo I bought mine from holland and barrett and still using it, only brush it through once a day, basically forget your hair good luck with your treatment
Hi, had my first FEC on the 8th using the paxman cold cap, very very tight & cold. Have some hair loss now and been told it works more for some and not for others, very funny feeling when “defrosting”, it went onto damp hair half an hour before the epirubicin went in and stayed in 45 mins after, took paracetamol. Only washed hair twice since then, no driers etc, brush with large comb. Wearing some trendy hats now. Having portacath next friday so no chemo next week, pushing the schedule out.
Hi I have very fine hair and have used the cold cap for 2 cycles (just about to have 3rd) although my hair thinned quite a bit just after my 2nd it has eased a little now. I have no bald patches just general thinning all over although when it is washed and dried you can’t tell. (I don’t like dirty hair and have washed it everyday naughty I know and dryed it etc etc). Hopefully it wont all fall out in protest. It is uncomfortable for the 1st 10mins but after that quite bearable. Good luck in whatever you decide
I was absolutely desperate for the cold cap to work - think the prospect of losing my hair was worse than prospect of losing my breast. I’ve been very disappointed, i’ve lost lots and lots of hair - guess i’ve only about 15% left - just had number 3 AC yesterday. I know most people would have given up by now and some of the chemo staff have been less than supportive. I think the only reason i’m persisting is because its such a big deal to me! i’m so gutted, still that its not worked well. Our hospital doesn’t have the sophisticated version maybe that’s the issue, maybe its the AC chemo, maybe its my crap hair! Truly wishing you good luck in whatever you decide.
I have had 3 epis so far and 3 tax,each time using the cold cap,i was going to give up after the first as i lost so much hair and was going bald on my scalp,but i carried on and have found that my hair started to grow again when i started tax,ok ts thinner than it was but i no longer have a bald spot as the hair has re-grown.If you didnt know me you would just think i didnt wash my hair enough or look after it,thats the problem im so desperate to get back to a bit of normaality,iv ordered a vegetable colour and have a hair appointment next week,altho i know its too soon as my last tax was only last week.I think once my hair looks a bit more presentable ill feel better and be able to throw that wig away which i wear when i go out.I would def recommend the cold cap its not the best experience in the world but i think it helped me cope with the cancer a bit better as losing my hair was always going to be devestating for me,good luck to you cold cap users
For what its worth I made the same decision last year when I had the chemo. They told me it was most likely to fall out with the EC, although I heard conflicting thoughts on the taxol impact on hair. Like you it was agony and I only lasted 40 mins and decided to do that every time for at least 3 hours would be unbearable. Also depending on where you have chemo you might even be able to go out for lunch after they take the blood for test, then come back for the chemo, but depends on hospital etc…
The advantage I found of losing my hair was that I did feel more support it was obvious to more people what I was going through so really I benefited. Also I think I looked quite good in the scarves, so embrace it. Whatever decision you take its likely to be the right one for you.
Hi, ive had to give up with the cold cap, after 2nd epi, i looked like Max Wall and was getting really depressed with my hair falling out all over the place, great big handfuls so, a few wonderful friends came round and we shaved my head in the warm sunshine on saturday. At least i dont have to watch it slowly vanishing from my head now!!! Spent a fortune in accessorize on scarves and hats which cheered me up no end!!!
I’ve been using paxman cold cap,and have had 2 of 6 TAC.I’ve lost a lot of hair and now have a bald patch on top of my head.However I did have very thick hair,so if I push my hair back with a wide hair band,or wear a hat you can’t see it.The cap was fine to wear,I didn’t find it a problem,but I had to use it for an hour before and 2 hours after my chemo.
Haven’t decided if I’m going to keep using it,will have to see if hair loss continues-I’m on day 6 of second cycle.Good luck!
I’ve had 4 epirubins and although it’s fairly thick all around my head including complete fringe, I look like Friar Tuck with massive bald patch on top. Really disappointing to lose the hair on top as I have to go out with the wig on. If the paxman cold cap had fitted properly, I wouldn’t have to wear the wig, but I think it’s still better than losing your hair completely and I’ll continue to wear the CC during CMF.
Big chunks of hair falling out now day 18 after first FEC, not sure if watching it come out every day like that is worse than just going to take control and having it shaved off completely. Will see how the second fec goes with cc and then decide. I feel quite emotional about it as shaving it off will then be such an obvious sign of the BC and I already struggle with the school run/ playground situation, don’t like the idea of people looking at me with the boys at either side!! xxxTina