Please can anybody help me… I have just had my second fec 2 x 6… 4 to go. I have been cold capping because I really don’t want to lose my hair. The first time I used the cap it was connected 30 mins before my treatment and was kept on for 90 minutes after. However, the second time, I had it on for 30 minutes before treatment but as soon as my treatment was over a nurse turned the machine off and told me I didn’t need it on any longer… I did question her but she was very adament that it needed to come off and wouldn’t listen to my worries… My hair is now shedding an awful lot 6 days post second chemo. I appreciate any help and advise as I am really worried.
Hi DebbieV
See also my recent entry on the weekly paclitaxol string…
Certainly, the cold cap needs to stay on for a time after the chemo but different chemo drugs and schedules demand different timings. On the Paxman machine that I’m using, there are laminated instructions sheets tied to the top which give guidance for different drug regimens for the nurses to refer to. Even so, the first nurse who did mine got the timings wrong (must have looked at the wrong sheet) and did me only for 30 mins after chemo instead of the one hour required for my weekly paclitaxol. Thereafter (for my next 5 sessions) the nurses got it right and kept me on for 1 hour after, so my own timing is 30 minutes before chemo, all during the chemo, and 1 hour after.
My hair loss was moderate after the second session – worryingly so and might have been because of the mistake – but has since stopped falling out massively, and now I’ve probably lost about 40% or so. My husband and friends say they don’t notice anything except perhaps a bit thinner. I notice more, but I’m not feeling it necessary to wear a wig… as I still have most of it left, and am not embarrassed by it so far. Now, it seems to have slowed down shedding, and I expect it might stay the same now for the rest of my sessions. I hope what you’re experiencing is the initial bulk “shed” which may slow down, but you need to insist that they double and triple check the cold cap requirements for your drug regimen. I would say - check with another nurse… or two of them… Where I’m receiving chemo there are always 4 or 5 of them around, and some of them are far more knowledgeable about the cold cap than others. Also you can look it up on the internet to check the recommended timings I think… It’s important to get it right according to one of the knowledgeable nurses in my hospital – she says even a few minutes can make a difference ! There’s little point in enduring the pain of it if the timings are not being followed!
Good luck – and tell them your thinking… dont be shy about being forward… it’s your body!
It sounds as if the nurse has made a mistake. It’s really sad that you went through the discomfort and hassle of the cold cap and are loosing so much hair.
I had FEC and the cold cap was left on for at least an hour after each infusion. Regardless of that, I still lost the majority of my hair in the end. For me it wasn’t all the fault of the cap as I have very fine hair and it lost all it oils through the chemo and matted into very hard knots.
Do you know which cold cap unit they use? I’ve put in a photo above of mine.
Hi I’m using the pax machine I’m on EC every three weeks had my first one on 10th oct it clearly says on my machine 30 mins prior, during and 90 mins after treatment so please do query it iv started to loose body hair today day 14 but not my head hair so far x
Hi Debbie
I’m using the Dignicap cold cap and its 30 minutes before and 90 minutes after so I would definitely try to get another opinion next time. Hopefully, what you are having is just some natural shedding and it will slow down.
i’ve just had my 2nd FEC yesterday but 3 days ago (so day 19 after first FEC) I’ve started losing loads of hair - very depressing. Have a bald patch on my crown now. However, I’ve read from other threads to just keep persevering with the cold cap, even if it looks like you’re losing a lot, as it gets better and hair loss should slow. Hopefully as you at least had it on during the treatment it will have had some effect for you.
Thank you to everyone that has replied to my worry… It makes me feel good knowing that there are ladies who understand how important cold capping is… I get told so many times “it is just hair, it will grow back”… I feel there is a special bond between us all… Something that people who haven’t experienced cancer would never understand… Thank you all!!! I will definitely question the staff before my next treatment. I wish us all to have a good recovery and become cancer free… xx
Hi
I’ve been cold capping I’m attending Colchester hospital in Essex I’ve just had my second fec …it does make for quite a long visit as the cap has to be on for 30 mins before they start to give you your drugs and 2 hours after also it does give you a head ache but I do still have quite a bit of hair .it start to shed 17 days after my first go so I’m waiting to see have much I will lose by the time I get my 3rd go… then I have 3 goes of T… I’ve heard you can lose 50% of your hair but I’m gonna give it a good go.