I have been browsing the forums and have now registered so I can share my experience so far and maybe get some more good advice.
I opted to try the cold cap and have had two of my 6 treatments (FEC100 for first, then it was changed to FEC75 - don’t know if they will keep to this dose for rest).
My hair has fallen out big time and is still doing so (started a few days before 2nd treatment). I have had it cropped short and still have a covering (of sorts). I have opted to go down the scarf route - I got a wig and really can’t see myself wearing it.
What I was wondering was - is it worth carrying on with the cold cap even though I don’t have much hair left? From what I gather from different discussion threads, it is the Epirubicin that really goes for the hair and I had 170mg of the stuff for my first session and 130mg for the 2nd, which I think is a lot!
On a more general note, I am finding the chemo tolerable so far - eating seems to cure most of the side effects! I don’t seem to be piling on the weight so I assume my body is asking for what it needs. Little naps after dinner are also very helpful to deal with the tiredness.
I have used the cold cap for 3/6 EC, I have lost masses of hair but only had my hair cut into a bob so can tie it back. If you have short layers at the back you might find that you loose quite a bit mid way down that you will see if your hair is too short, I have also lost a lot on top (monks patch) but my fringe is now pulled back over with an alice band to hide it. Keep getting to my next treatment and thinking that I don’t have enough hair to bother with but if I can stay looking passable I will keep going with it. Have about a pencil thick ponytail but no one can see the bald bits so ooks ok.
I had ECF , slightly different but does have Epirubicin. My hair thinned considerably throughout but I kept a covering all over throughout. I suppose it depends on how you feel about losing it all. I just couldn’t bear the thought so I persevered.
I used cold cap for 1st 2 Epi and lost all of my hair 2days after the 2nd despite having had my long hair cut very short.Just your luck whether or not you keep your hair I guess! I’m glad I tried the cap anyway as I would have wondered if I could have avoided hair loss.Good Luck,I hope it works for you Kermit.If not,there’s worse things than being bald for a wee while.I can see a few wee bristles appearing on my head now and look forward to appreciating my thick hair when it comes back.
Tricia
Hi Kermit…guess I got lucky, had 6 x FEC, Onc nurse told me beforehand it only works for some 10% of patients. decided to go for it, as all I had to lose was my hair! It got very thin on top, but never needed to wear my NHS wig (which was brilliant, hubby tactlessly said: "Liz, it looks better than your own hair!)…from what I have read on here, if you are going to lose your hair it happens after the second chemo.
Good luck with the rest of the treatment.
Liz.
Hi Kermit,
I went through the same thoughts myself. Watched a number of people shave all their hair off really early and some later realised that they would have kept quite a bit if they hadn’t. Some people even shave their heads before it really goes. Shows we are all different. Losing my hair was a big thing for me, so willing to try anything to try to save it. I lost about a fifth of my hair just after the second epi and never had another loss of so much in one go. Wondered if the cold cap wasn’t on tight enough. BCN said the monks bald bit I had, meant not on low enough and nearly snapped my neck trying to ram it on next time! LOL . It has just been a gradual but continual loss due to the epi, I had 178mls four times before switching to CMF, which is kinder to hair so stopped using the cold cap. I have not worn a wig (had 2) or a scarf (had at least 10 ready) but wore a cap a few times (had 8 hats ready). I have been wearing a really wide stretchy black lacey hairband which cost £2.99 in H & M. It covers the bald bit and people actually think it looks trendy. LOL. I have twiglet long bits sticking out the sides, my fringe is very thin and the bald top bit already has an inch of fluffy hair coming back, but glad I did it. I never lost the back part much.My view was that I would keep as much as I could and then the bald bits would just have to fill in so I would be back to hair more quickly. This has worked out as planned so far. By the way someone else said the cold cap works for 80% of people and the hair should be wet, mine never was though.
Good luck. I just waited to see how much was left and decided on the day.
good luck
Lily x
Thanks for all your helpful responses. It sounds like it might be worth persevering as even a small coating of hair is better than nothing. The only bit I am really concerned about is the front hairline so I can continue to have a wee bit of fringe showing under scarves. I have ordered a fake fringe to velcro onto a wide headband and wear under scarves - it hasn’t arrived yet so I don’t know whether it will work.
With regard to scarf wearing, I am quite enjoying trying to find pretty scarves to pick out colour of clothes - and luckily I already had some very nice silk ones that I’ve had for years and never done anything with. I have also constructed a bit of padding covered in silk to sandwich along front edge of a folded headsquare, which stops the tightness around forehead (what I call the Mother Teresa look, which does absolutely nothing for me!)
Good luck everyone, whatever stage you are now at.
I’m new to this forum and have spent most of my afternoon trawling posts that caught my eye. This one is especially close to me because this is my dilemma as well. I have had x3 EC and my 4th is for tomorrow. I swore after my last session that I wouldn’t have the cold cap again because it throws me more than the chemo. Dilemma now is I still want to keep my hair and I still have 4 sessions of Doxataxel(!) to come.
I don’t know if I can “be brave” and try again or whether I should call it quits and get a wig/scarf/hat/whatever. I’m not usually a quitter (idiot me still smokes) but this is different. I know it’s going to be my decision alone but I feel like tossing a coin!
Whinge over, off to ring my mum for her point of view.
Hi LInda,
Does doxataxel make your hair come out, I have a feeling it doesn’t. You can look it up or read some threads on it. If it is kinder on hair you will be in the same situation as me and so I would say if you can stick with the last one or you may regret it. Some people have taken it off early and been ok still. That was my plan for the last one as it was starting to really get to me too as I was often the only one in there wearing it. I would start and if I couldn’t stand it would take it off early. I am now glad I stuck it out. CMF thins hair but the loss is about 6 hairs each day with no cold cap - heaven after epi. I also kept most of my eyebrows and eyelashes from the cold cap and these take a lot longer to come back. I would encourage you to stick with it if you can, as it is the E that totally loses all hair.
Good luck with whatever you decide
Lily