I am having E/CMF Chemo, and have just finished the 4th Epirubicin. I have used cold cap for all those treatments, and the chemo unit say I do not need to use cold cap for the next 8 CMF sessions. However, the manufacturers of scalp coolers say that it should be used also for the CMF, as Cyclophosphamide can cause severe thinning and ( rarely ) total hair loss.
Has anybody had this situation, please? - and how did you handle it?
Thank you,
Annya
Not started using it yet but I am on similar drugs to you- but intersted to know if it is working for you as I am going to give it a go - have you noticed any significant hair thinning? would you recommend it? I’m quite happy to stay another hour or so in the hosital if I can maintain some sort of normality in this mess.
Hi,
Yes, it has helped, although my hair is now very thin and brittle, with some bald spots. I think I could have saved more hair if I had known how to handle it better.
I am really pleased to have any left at all, and would definitely use cold cap again.
Good luck with you treatment!!
Hi Annya,
I am also on epi/cmf and start number 8 on Tuesday so thank goodness I can see the finish line at last. 186 days on chemo and 10 left to do. What a great feeling, you will just be so happy when you get to about 6. Back to your query, I used the cold cap for all 4 epis but for none of the cmf doses. I have not had any hair loss on CMF so far. My research nurse said right from the start you won’t need it on cmf but I was also surprised tht it is listed as a side effect, maybe they are just covering the minority that it could affect. My hair has been growing happily on cmf and I have now chucked everything in a box as I have enough hair already for a pixie cut, but it is short. I had it dyed this week and that has made the hair manageable and look thicker as it has made it block together and cover the grey bits.
Good luck
Lily x
Hi Annya,
I was in the same situation as you whereas I scalp cooled for the 4 Epi and hardly lost any hair, so although the nurses said I didn’t need to scalp cool for the CMF, I had read that it could cause some thinning so insisted that I carried on with it. That was fine with them, although they thought it was unnecessary I wasn’t prepared to take that chance! So finished my chemo with no hair loss.
Good luck
x
Thats encouraging to know. I’m going to gve it a try. Getting my long hair cut this afternoon all the same into a graduated bob so that I can tie it up if I need to, and to give an illusion of thickness than have long straggly hair. Wig on standby!!!
Hi Mandy
This is my second time round on Epi and CMF the first time I cold capped all the epi and not the CMF and thinned considerably (the worst one yet and this is no 5!!) with the CMF so this time Ive insisted its in the timing book so I want it!!! Im the only person who uses the cold caps in our unit so they think I know what Im doing so I looked it all up and told them how long Id be!!!
Stick with it, if you tell them you want it they will let you use it!
Hope the new haircut helps!
Sue xx
Thanks for that… well I have had aprox 7 inches or more chopped off today looks thicker and I haven’t even sarted Chemo yet. From what I remember I am having 3 x epi , 3 x 5FU then 3 of another type can’t remember what its called 6 short sharp bursts was how they worded it, so if I can keep as much har as possible after the first 3 sessions I should be on a winner… I kno the scalp cooling adds a couple of hours to the streatment but it takes longer to grow back so it muct be worth it!
definatley Mandy, for epi its 15 mins before (try n stretch it to 25 if youve got thick hair) and I think an hour - hour half after its gone through, not too bad, take a good gossip mag or book time will fly!!
Get yourself a good leave in conditioner, a spray one, Im using an old ghd one at the moment, give your hair a good soak where the cap touches it it’ll help protect it, and if your feeling brave enough wet your roots on top (monks bald patch!!!), fringe and sides above ears, to help the scalp chill!!! ( take a couple of paracetamol before you go if you think you mite need them)
Dry shampoo is a god send as well, I try not to wash more than twice a week, once if I can get away with it, and no straightners or hot hairdryers unless you absolutely need to!! I basically tie it up and try not to fiddle with it and treat it gently!!!
Good luck, Im having 3rd epi next weds and still have full head!!!
Sue xxx
Great to hear that you are getting on well with the cold cap. And thanks for your advise will go and buy some products this week!!! So just to get it right are you saying to go in with wet hair/head before putting on the cap to help it along? And its still ok to take painkillers while on chemo?
Thank you all for your help. It is all right to use pain killers for the cold cap - the nurses will give you them if you ask. If you are using conditioner it is really important to use a spray - I didn"t,
and put it on too enthusiastically losing more hair as I put it on. I have found a really good product to help with the thin patches - it is called “Toppik” . It is made up of keratin potein fibre and has made my own hair passable, just wearing my wig if I need to go anywhere where I need to be tidier (what a hope at present!!) The fibres are stated to be safe to use on hair like ours, and although my hair is very fragile they have helped a lot.
I have just bought some boots own leave in conditioner for thin hair and another one for hair loss for later on if it starts to go - already using it before I start chemo !!! I am desparate to keep as much as I can but am also looking a wigs tomorrow as a back up. Oh what a rubbish thing we have to go through!!! Must remember that this is the final hurdle and all will be good again soon! In the meantime tho… 
Sorry, Mandy,
Forgot to say about dampening hair for the scalp clloling. I took a spray bottle with me &sprayed my hair with water before the cap went on, but I see from other posts that some people get their hair really wet -dunking their head in the basin.
Dont know which is best - the nurses use the spray.
Best wishes,
Annya