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Cold Cap??

18 REPLIES 18
marble1966
Member

Re: Cold Cap??

hi jocie,

ok, decided to reluctantly to go ahead, treatment starts 13/05
6 x fec. Will try cold cap to see how i get on and going to see
about wig next week, just in case. dont think they are doing
any of the scans because i had no node spread. not looking forwrd to it and once the date had been suggested, the tears come back,
but until i start, dont know what side effects i will get. dont think i can take the chance of not having it, too many people on
here that havn't had it and it has come back. thanks for your reply

nicky08
Community Champion

Re: Cold Cap??

Hi
Hope you are not too cold from the cold cap! The chemo may eventually make you menopausal but this may not happen due to your age. I was 46 when I had chemo last year and had a blood test about 3 weeks after the last one to see my 'status' I probably was post menopause by then but to be sure I had radiation to my ovaries a month or 2 after. Hope you have had your treatment on time and been looked after. Make sure you get everyone at home to look after for the next few days!
Nicky x

KerryRose
Member

Re: Cold Cap??

Thanks Nicky! I was thinking they could just take them out while I am on chemo!?! Oh dear maybe I am rushing things a bit! Im not going to be using them now so I am thinking just get them out as I am hormone responsive.
PS - Got the cold cap on now and I have found it fine so I am glad I am giving it a go.
xx

nicky08
Community Champion

Re: Cold Cap??

Hi KerryRose
Hope you feel OK after the Herceptin, I hear it can leave you quite tired, however I expect the Tax will cover that up - unfortunately - as that has more side effects. Hope that goes well and you are not too bad, I've not got experience of either so probably speaking rubbish!
I had 6 rounds of chemo and got checked after 3 then after 6 so I think this is quite normal. There wouldn't be much change after 1 or 2 rounds and you'd be going through unnecessary tests and results.
Also, I'd imagine from your age your onc wouldn't remove your ovaries but maybe put you on Zoladex after chemo. They won't usually do anything whilst you have chemo so you do have a while to ask enough questions! It would be up to you ultimately if you did want them removed - they can't stop you!
Hope all goes well today but remember to take it easy afterwards - chemo really does knock you for 6.
Nicky x

KerryRose
Member

Re: Cold Cap??

Thanks for all your feedback. I have decided to give it a go and use the cold cap tomorrow. Fingers crossed!!
Had my first round of herceptin today and start taxo tomorrow. It definatly does calm you down a bit once you start having treatment.
I can't remember if I have to wait 2 or 3 rounds before everything is checked over. 3 Rounds does seem like a long time to wait to see if its working? Does anyone know is this the standard to wait this long?
I am also a bit confused as to why my onc said that I shouldn't think about having my ovaries removed at the moment?? Surely if I am hormone responsive and being 31 they should be?? Does anyone else have any advise on this?
Its all rather confusing isn't it!!
xx

josyemarie
Member

Re: Cold Cap??

Hi Marble, How did it go today?
Josie x

DebsH
Member

Re: Cold Cap??

Hi KerryRose,

I wasnt offered the cold cap when I first had BC back in 2000 and lost my hair, yes its grows back but as the others said it never really goes back to how it was. About 4 years after that... more chemo and I had the cold cap - it is a bit crap and b...... freezing but you do get past the barrier and after a while you cant feel nothing. I kept all my hair, it thinned a little but no problem. Now I am on Taxol weekly and unit said that I couldnt have cold cap cos it takes up too much time (I was gutted) now 5 weeks into treatment lost all my hair. I actually dont feel too bad in myself apart from when I take my wig off (don't get me wrong its a fantastic wig - much better than my normal hair, but its not mine!! and I look at the state of myself and I look and feel like a cancer patient and then I think s... I do look ill. If I had managed to kept my hair this time phycologically (sorry spelt wrong!) I think it makes all the difference, but thats just vain old me! I think its definately worth a go. Good luck with the treatment, its c... but you will get there.

Love DebxH

celeste
Member

Re: Cold Cap??

Ahhh - well I didn't use the cold cap - partly because I couldn't be arsed, but mainly because I was told you could still get skin cancer if you did! Did they tell me porkies, I now ask myself. Anyway like most I found the experience of losing my hair very distressing, but once lost, very liberating in a bizarre sort of way. I would never have tried it but baldness quite suited me actually, and obviously gave me gravitas of the 'grasshopper' variety as well. The big thing i struggled with was/is the damned awful curly hair that replaced it.

Whatever you decide, i wish you luck

Deirdre
Member

Re: Cold Cap??

Hi Kerry Rose, I also used the cold cap when I was going through chemo for my primary bc. I hated it. It was so bloody cold. But I perservered and my hair stayed put.

Three years later I had to go through chemo again and decided not to do the cold cap business. I just didn't want to spend any extra time in the chemo chair - you have to have it on for a little while before they can start the chemo to make sure your hair follicles are well and truly frozen.

My doctors seem to think that it is a myth that some cancer cells can "escape" the chemo if you wear the cold cap. There's no scientific proof for it, so don't let this put you off.

At the end of the day I found going bald wasn't so bad - I quite enjoyed all the scarves and I liked my stubbly hair when it was growing back. It's now that bothers me, when my previous thick glossy locks have given way to old ladies' hair - very grey and no body. But I would make the same decision not to do cold cap again because I just didn't like the frozen head sensation.

I've also noticed that more people at the Marsden seem to be going commando. Don't know if it is something to do with Jade Goody or just a coincidence. But actually, being bald was OK for me and nobody particularly stared. It was just a bit cold in winter!

Good luck with your treatment.

Deirdre

nicky08
Community Champion

Re: Cold Cap??

Hi KerryRose
I had 6 x FEC last year and used the cold cap for the 1st one. My hair just about held on until the next dose (3 weeks) but fell out in a part that presumably the cap hadn't fitted on tight enough to. As this spot was too big (spot, who am I kidding it was like a monk's head!) I decided not to use it for the other 5 sessions and wore a wig when I went out and buffs or similar in the house. It was only by the very end that I resembled a wispy haired weirdo, not all of your hair falls out at once. I found it very uncomfortable especially the chin strap but I do know of many ladies who got on fine with it and were happy to have used it. Good luck with the treatment and hope the chemo does the trick with your mets
Nicky x

Jackie24
Member

Re: Cold Cap??

I used the cold cap 3 years ago when I had Taxotere for liver secondaries. My doctors were more than happy for me to have it though I get the impression that some hospitals just can't be bothered with the hassle. My hair thinned a bit but it was much nicer than losing it all when I had FEC in 2001 at primary diagnosis.It's a bit painful for the first minute or so then you get used to it.Good luck, love Jackiexxx

Kazzi
Member

Re: Cold Cap??

Hi Kerry Rose - I am 35 -was diagnosed with BC in 2003 aged 29 and secondries in liver lungs spine and skull diagnosed in Jan 2009! I have used the cold cap both during both rounds of chemo (FEC in 2003 and Taxotere at the mo) and I haven't lost a hair on my head!! I would go for it - We have enough to cope with without the upset of losing our hair too!! Good luck with everything - If there is anything else you need to know then please don't hesiatate to ask.
Love Karen xx

marble1966
Member

Re: Cold Cap??

Hi Josie,
no spresd to lymphs, had mri scan done, just the breast area,
and chest x-ray, normal mammogram and ultrascan, but have back
ache and pain in the right hip and can't help thinking if it's
somewhere else as well. will mention it tomorrow, seeing
onc to discuss treatment again lol! cant make mind up about
having chemo, or whether to just do horm tabs + rad. Actuall just remembered, i did have an internal scan as well for gyne problems, this showed 3 small fibroids and small cyst on ovaries, not sure
if the liver would have been checked then? I will mention it
tomorrow to onc, seeing him again to make my mind up about treatment, whether to have chemo or just horm tabs + rad. have
the fact the decision has to be made by me! thanks for reply x

josyemarie
Member

Re: Cold Cap??

Hi KerryRose,
No,thankfully I didn't.But I had a poor prognosis as the tumour's vascular invasion was off the ricther scale and my chances of finishing chemo without it reappearing weren't good!!

Hi Marble,If the BC has gone to the lymphnodes it's routine in most hospitals to have an abdominal scan,chest x-ray and bone scan to see how far it has spread. The ab scan should show if your liver is clear and the blood tests you have before each chemo would also show up any liver problems.

Josie x

KerryRose
Member

Re: Cold Cap??

Hi Marble, Well once they confirmed the lump was cancer they then sent me for a CT scan, bone scan and sentinal node removal. The CT and bone scan checks your body for any spread, and the node removal also checks for any spread to your nodes.
Maybe your doc is sure they have caught yours early? Maybe worth asking he / she why they haven't put you through for checks on spread?
Good luck xx

marble1966
Member

Re: Cold Cap??

hope you dont me asking, but how did they find the liver mets, i have primary bc, just waiting for treatment to start

KerryRose
Member

Re: Cold Cap??

Hi Josie
Did you have any secondarys? Thanks for your feedback, maybe I will give it a go then.
x

josyemarie
Member

Re: Cold Cap??

Hi KerryRose,I used the coldcap for 4xFEC,4x Taxol.Hopefully it didn't leave any cancer cells behind....but then I am 5+yrs down the line and hopefully they would have surfaced by now! I'd go ahead and use it.....and best of luck!!

Josie x

KerryRose
Member

Cold Cap??

Hi I'm a 31 year old who was just diagnosed with primary bc and mets in my liver last week so as you can imagine still in shock but trying to be as positive as I can be! I am hormone responsive and can use herceptin. I start on Herc and tax tomorrow. My onc said I could use the cold cap which I was thrilled about at the time but I have now read that certain doctors don't recommend the cold cap as it might leave some cancer cells behind??? Now I am in 2 minds if I should use it or not. Anyone have any thoughts?