Hi Lily
Sorry we must have been typing at the same time.
I am going to give it a go. A girl from school rang tonight and said she had used it and managed to keep most of her hair. The first time she wanted to take it off after 5 mins but her hubby persuaded her not to, she was glad he did. Hopefully I won’t wimp out it’s worth a try. Might get hubby to massage my feet while I sit there, he might feel a bit sorry for me.
Not sure if you have finished your chemo yet, but if not I hope it continues to go well for you in the hair department.
Take care
Ann
xxx
HI Ann,
I find it is always really busy when you put it on. They get the iv or in my case needle in the port sorted first because being cold makes it harder to find veins. Then they start running fluids through to test it is in ok and at the same time put the hat on so by the time I have finished talking to them and fussing about the chill bit is almost done. You do have to make sure you have very warm feet, I wear socks and short boots with jeans even on very hot days as the rest of the unit tends to need the air con going, unlike me. I have several layers of clothes and an extra cardy to add to it. They put a towel on the back of my neck because the freezing pipe is a killer if the padding separates but I take a woolly scarf too in case they don’t offer me a towel. I have one hot drink but did not really need it and then have to keep disconnecting and going to the loo if I over do the fluids with the drip going on top. You suddenly find yourself absolutely bursting!
It really is worth a go but be ready to tough it out for up to 10 minutes ohh and for looking like fat faced hamster!!
Lily x
Anndi. Give it a go, at least the first time as you have nothing to lose (pardon the pun!!). That is what I thought and after the first 19 mins it i bearable and as I said worked for me. I would have kicked myself if i hadn’t have given it a go. If my last 3 chemos would have been short like the first 3 i would have kept up with it. But as they lasted 3 hours and then 1 hour before and 2 hours after the chemo there was no way on this earth i could wear it for 6 hours just for the sake of my hair.
Anndi forgot to add. You can try loads of different wigs on. I wanted a bob too. Tried one on and it didn’t suit me at all. Went for something similar to what I used ot have only a bit longer so people would think I had grown it and had it styled. Had a few comments on how i suit it this way (even OH said it is better than my normal hair!!!Cheeky.) So might let it grow and have it styled the same but don’t want it to be too much of a reminder of now, if you get what I mean.
I do not know if cold cap has worked yet as I am only 8 days post first FEC. However I see from others that it should be put on one hour before and 2 hours after. They only put mine on for half an hour before. Does it make a difference?
I will also take on board the tips about the cold. They also put the cap on before attempting to find a vein. And then they had trouble. I now see why. I did say was it the cold. But who am I only the patient. You put your trust in the experts.
Starfish,
even within my chemo unit some nurses say 30 mins and others 40 mins with the cold cap before treatment.If mine was an hour it would just be because they were busy or forgot me!! it does make a big difference to my veins though. Hope it works for you, I had a big loss just before dose 2 but I am on just a super wammy dose of epi alone and it eats hair for breakfast compared to some of the other drugs! Good luck I still have enough hair to go around but with a hairband to cover a baldish top to my head! Dose 3 on Tuesday and fingers crossed about hair.
Lily x
Hi there
Have been told in my chemo unit that they put it on for 2hrs in total is that long enough?. Also am having EC chemo does anyone know about this combination, as most seem to be having FEC was wondering why I didn’t get the F.
Thanks
Ann
xxx
Hi Ann,
if you go on the web (the baccup sites I think) you can look all the drug regimes up and if you keep going through the pages clicking on things there is a big bit on each regime and what it is for. The F is the 5 FU which is the one that was in the paper for causing chemo brain so you might not be too disappointed to miss it! I get that one for the second half of my treatment when I change to 3 drugs (CFM) . Ask your BCN why you have this, standard treatment in our area if 6 x FEC for early dx of most types, but others on here are having my trial treatment as standard. Some people are private patients and may get different treatment as money is not a consideration to the insurance company, I believe they act on the consultant’s advice.
Most centres put the cold cap on for 2 hours after the treatment has gone in, but yours might be the latest advice. I know I block a chair for a lot longer as I could be out in under an hour without it. I have the cold cap on about 30 mins before, through the treatment and then another 2 hours, so probably 3 and a half in total.
Good luck with your hair, my parting getting wide was the first bit of mine to go so you need to get a good contact on the very top of your head
Lily x
Hi Lily
Thanks for that most of the ladies on here seem to change after the first 3, I want to make sure it’s a good combination as there is no use having it if it doesn’t work. I also thought most had the cap on for longer like you, I will ask about that also. Hopefully your parting won’t get any wider ( the things we have to do!! ), by the way does your hair continue to grow with the cold cap or do you just keep what you started with?.
Thanks a lot
Ann
xxx
Hi Ann,
my parting is more like a monk’s top than just wide. I cannot see whether I have any growth on the top between treatments but I did have to have my fringe cut recently. If and it is a big if, I keep even this small amount of hair I would be able to disguise it wilt the big stratechy hairbands. Some consultants change treatments as soon as the latest trial results are published so newer people may have something different from that I guess.
I am in for number 3 on Tuesday and my hair usually dives South just before the next one leaving me wondering whether to wear the cap again or not.
Enjoy the weekend
Lily x
Hi Lily
What do they say about washing your hair as I have always had very oily hair it’s fine, I do have to wash it everday. Not sure if I could do the oily look. How often can you wash yours?.
Ann
xx
Hi Ann
Hope you dont mind me butting in! I am trying cold cap will be 2 weeks tomorrow post first FEC. I was told to use Simple shampoo and conditioner which I have done. I also washed my hair the day before treatment. I was also told to do as little to as possible. No perms or colouring. I have naturally curly hair which I had low lights put in about two weeks before starting. It was blond and knew I woudnt be able to keep that up. I am only shampooing once a week. Also applying leave in conditioner as well as ordinary and any styling products mousse etc. Do not use combs. Which I didnt before just hands. So it is very difficult. The worst bit was last week 7 days afterwards by skin and hair became really greasy. And I developed itchy spots on scalp. But this is settling down now. Also I noticed on some site yesterday it said best not to shampoo just after cold cap. Which again I did. I waited a week having shampooed only the day before.
Hope this helps.
Starfish x
Hi Starfish
Very very helpful I will get oily hair if I don’t wash it but I thought you couldn’t wash it for weeks, so sounds better than I imagined. Would you mind staying in touch and letting me know how you get on with the cap. It would be a help to know what’s coming next. Does your hair still grow or does it stop?.
Thanks
Ann
xxx
hi cold cap worked for me i still got a wig incase its in my bottom drawer i must take it back for refund …
Hi everyone,
Hope you don’t mind me joining in.
I had my first chemo (epi) on 13th June using the cold cap as I am absolutely terrified of losing my hair. On thursday (day 13) I noticed more hair than usual in my brush and when I washed it on Friday, loads came out. I have quite long, very thick hair.
However, although it’s still coming out when I brush it, it’s not in handfuls and doesn’t look any different than usual so I’m hoping that it’s just going to thin out. Went to see the wig lady last week & ordered one just in case as a back up. Hopefully, it will stay in my bottom drawer like jals. On the plus side, I’ll save a fortune in hairdressing costs over the next few months!
I’m due for my second dose on Friday & will be using the cap again. Will let you all know how I get on.
I would appreciate any advice/comments from anyone who’s using/used the cap. Is it usual to lose some hair and if so, does it slow down after a while?
Love & best wishes to all
Carol X
Hi Jal777
I can’t count the people who have said they have never worn their wigs, there must be hundreds of them tucked away in drawers. We should set up a shop!!.
Hi Carol
Good to hear you are holding on to your hair.
I have recently spoken to a couple of ladies who used the cap. One said her parting got really wide but not too bad, she said to make sure the cap was fitted as close to your head as possible. The other lady said she lost quite a bit but all over so you couldn’t really tell, very reassuring. Do you know if your hair continues to grow?.
Good luck for Friday. I have my first on July 15th, not long now.
love
Ann
xxx
Hi everyone,
I have epi number 3 on Tuesday. I believe epi is the one that makes your hair go, as my info sheet says everyone loses their hair on this but a cold cap may save it. I am on the TACT2 trial and I get 187 ml of just epi, which BCN says is a very high dose whereas my friend on FEC only gets 70ml of epi, so I am sure this will be the reason for some variations in hair loss. People are still saying they love my hair in my new style!!! LOL. I had it dyed back to my natural dark colour before it started, with a few highlights woven in, that sort of blend in but won’t leave a line. I had it cut to chin length at the front and going up at the back, you know the style I mean? This has lasted really well through dose one. I started to lose hair about day 17 which was gradual, quite a bit in the comb each morning and about 8 would come out any time I touched it. Had the cold cap again for dose 2 and 2 days later I had a huge loss of about a fifth of my hair and got very upset as felt I had wasted hours with the freezer on my head. The loss since then was about 40 every morning but has slowed to about 15 in the last week. So it is more stable just now and going to have cold cap again despite thin hair and baldish top to my head. I can easily disguise this with the wide stretchy hairband, H & M £2.99. I got black to blend with my darker hair. If I can keep some hair I will continue the cold cap, as the drugs I change to after dose 4 do not affect your hair apparently, I hope so. I think it will blend in and really hope to leave my 2 wigs in the draw too. Will keep you posted how it goes.
I use a comb and never a brush as it pulls. I comb it before a shower as clumps of wet hair seem to upset me more when they stick me or block the plug. I use a hairdrier held away for a couple of mins, no point having hair if you hate it. I only use a dot of shampoo and no conditioner as needs more rinsing and friction on the scalp. The grey hairs have gone quickest so I actually look darker at present. I wash mine once a week and not for 2 days after the cold cap, but hey I can’t go anywhere anyway. My hair is fine and not thick at all, if it was thicker you would notice even less.
Good luck to all of you, I hope you are fortunate but don’t panic if you get a big loss, just wait because it may settle but if you rush out and shave it off you cannot stick it back! I have wigs, scarves and hats ready just in case and even had my fringe cut recently. Also as I said before no loss on the eye lashes or brows and I would have the cold cap just for that myself.
Hairy hugs Lily x
Hi again everyone,
Ann,
I’m not sure whether your hair still grows while having treatment but if you ask your BCN or onc, they will probably be able to tell you. Good luck with your first session. I found that it wasn’t half as bad as I was expecting. It’s a bit like having your first baby, fear of the unknown, if you know what I mean. Now I’ve had one and know what to expect, I don’t feel too bad about having the others. Hope the cap works for you too!
Lily,
Many thanks for your advice and information. When I go for my review on Thurs I will try to find out what dose of epi is being prescribed for me. I think you’re probably right about this causing the variation in hair loss. Good luck with your final dose and I sincerely hope that you hang on to the rest of your hair as well as your brows & lashes.
Good luck to everyone reading this
Carol X
Just bumping this up for Laurel1
Nicky