I was on AC chemo - the 'c' bit being cyclophosphamide. I believe FEC also includes cyclophosphamide but in combination with something different. My scalp was sore too. I also had a panic when it started shedding badly - I know I was worried until the end of the second cycle but soon after third chemo I think it was clear that I would get by without the wig. Once it started shedding it wasn't really at any particular point in the cycle. It was bad towards the end of first cycle and after second chemo but then it slowed down to just a few hairs and then stopped (I think it stopped completely some time early in third cycle). Certainly did not do it every day for 12 weeks and by the end of final (4th) cycle it was starting to grow back in part of the thin strip - chemo nurses said they had seen this with other people on AC and using cold cap.
I assume your chemo nurses have suggested only washing it when you have to and using very gentle shampoo? I was trying only to wash it once a week. There are tips like this in the BCC booklet which is on this website (in the publications section). Somebody suggested on another thread that having short hair may help because it does not pull on the roots as much (think my chemo nurses said something similar but mine was short anyway).
Don't worry about it seeming trivial - it really made me fed up too and I had a chat with the helpline.They told me that loads of people hate it so we are not alone! I too found the wig itchy and uncomfortable and only wore it once when it was fitted. Shortly after the hair loss slowed right down so I managed with the hair band etc. If you don't mind the cold cap then might be worth keeping going even if your hair thins, in the hope that it will grow back quicker - obviously I can't be sure it was the cold cap but my hair definitely grew back fast.
Thanks for your advice... I think it is re-assuring! If there is a hope this might slow down it has got to be worth sticking with it - did you find there was a pattern to the shedding - I am wondering if it sheds towards the end of the cycle and then stops for the couple of weeks at the beginning of the next. If its a short term shedding that's no big deal but I am now panicking its going to be like this every day for the next fifteen weeks. Its so good to be able to talk to people who have actually been through this. The actual cold cap treatment wasn't an issue for me and I really hope I can keep enough hair to look respectable with but wonder if I need to go shorter than my short bob and cover with a wig - which is so itchy and uncomfortable. Thank you so much for your help - when I read what everyone else is going through it seems so trivial.
not sure what FEC is - I am on 6 lots of cyclophosphamide and so far had very little in the way of side effects. Really alarmed at the way my hair has suddenly started shedding and my scalp hurts too. If this is short term, I can cope but the thought of this being daily for the next 15 weeks makes me want to cry.. I know I'm a woose but can't get my head round this. Thanks for your advice.... do I carry on with the cold cap, short hair and cover up with the wig or do I give up?
Not daft at all. I did not want to use a wig either. My hair started shedding after first chemo too in spite of cold cap. One thing to consider is that the cold cap has to fit tightly to the scalp. I had some shedding all over but it was shedding particularly badly in a strip from one ear over to the other where the cap was not touching my scalp because it was too big. The chemo nurses were great and 'packed' the cap for subsequent sessions to try to make it fit better. This definitely helped. Don't know if this could be an issue for you too.
As you say everyone is different but my hair loss did slow down and then stop. Where the cold cap fitted tightly at the back my hair looked more or less OK - people who did not know me would not have noticed. The fringe thinned a bit but again nobody would have noticed. I never used the wig - I got by with hairbands to cover the thin strip from one ear to the other because this was noticeable. Also had a cap to wear in strong sunshine (I was advised to protect head from sun).
I was told sticking with the cold cap would mean hair grew back quicker and more likely to be the same colour. Don't know how true this is but where mine thinned it was growing back by end of last cycle and it was the same colour (which was a relief as I did not want a strip of different coloured hair!).
It is uncomfortable so I can understand that you might think about giving up on it but I was pleased I stuck with it. You could ask your chemo nurses what they think - mine encouraged me to keep going because they thought it would stop shedding. I am guessing that with all their experience yours might have an idea too. Hope this helps - and really hope it slows down so you can manage without the wig - I felt exactly the same.