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Anyone managed to keep hair with 6×fec and cold cap

13 REPLIES 13
Melia
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Little thing that should say. Though a lotto win would be nice right now!
Melia
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Yes I suppose that's a good way of looking at it really pleased you manage to keep it. We're going through enough crap without having the horror of hair loss too. I'm like you and haven't announced it to the world as can't bare having to tell everyone I bump into and hate the poor you looks people give me. I could not bare to wear a scarve it is so not me I will wear a cap if anything. This I she one time I wish it was winter would be so much easier. I haven't bought a wig yet can't face going to the shop and feel like I don't want to tempt fate either! I hope I can get one quick if the worst does happen. A family member had bought me the paxman shampoo and conditioner I'll try any lotto thing that may help. Xx
Blue2
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Hi Melia
I used the simple conditioner and also dampened my hair for the first 2 sessions but after that used a paper surgeons cap on my dry hair for the following 5 sessions, to protect my scalp as I had bald patches. The hospital provided the caps and never questioned me continuing, though I think some places do. Some of the areas where I went bald - my sideburns and behind my ears - already have a cm or so of new growth which is reassuring to see, and think the cold capping has helped with the speed of that. Even though it was so important to me to keep my hair, my attitude towards capping was to give it a go, and even if it only worked for the first few sessions, at least I managed to keep my hair for a few months longer than if I hadn't capped at all.
Melia
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Also did you wash hair straight away or wait for a few days xx
Melia
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Thank you blue 2 nice to know that they still let u continue with cold cap with a bald patch. I just want to get it over with now. I've been gathering info for weeks now so think I'm as prepared as I'll ever be. Did you use a leave in conditioner at all xx
Blue2
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Hi Melia
I've just completed 4x T and 3x EC, in that order and I cold capped. Like you, it was really important for me to keep some hair. My youngest son was really upset about me wearing a wig and I so wanted to ease this journey for him. I did buy a wig, two actually, but have never worn them. I have chosen to tell only a handful of people of my diagnosis and treatment, so wearing scarves in public wasn't an option, and I was scared to wear a wig in case someone noticed and started asking questions.
I had medium/thin hair to start with and had it cut into a bob. I followed all the advice re washing, combing etc and used simple shampoo and conditioner. After my first treatment, I got a bald patch on the top of my head and shed quite a lot of hair. After my second, the bald patch got bigger but the shedding was less. On my third and subsequent treatments I wore a surgeons cap when capping to protect my scalp. By the time I'd finished my 4th T, id lost maybe 30% of my hair, wore bobble hats when outdoors and used toppik hair fibres to fill my bald patches the rest of the time. After my first EC (5th treatment) I had another big shedding of hair and couldn't fill the bald patches with toppik anymore, so started wearing headbands or tying my hair in a ponytail and doing a combover. And that's pretty much how it is now 2 weeks after my final chemo, although I have noticed some new growth which is starting to fill the bald bits!
I never cut my hair shorter than a bob as found it useful being able to wear a headband or tie it up.
Ive probably lost 50-60% of my hair overall but it's surprising how well it looks considering and I really don't think people who don't know my diagnosis would notice anything different apart from my new liking for headbands!!!
I would second previous advice and make sure you get a good fit on the cold cap, especially on the top and the crown.
Good luck!
X
Melia
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Leanne I have heard of that but too far to travel and out of my price range too... I'm finding this the hardest to deal with out of everything. And if I hear one more person tell me 'its only hair, it will grow back' I swear I will flip. I'm not stupid I know it will grow back doesn't make it any easier to deal with. Some people seem to just sail through this part and wish I could be more like them and find it 'liberating" to shave my head but I'm afraid I'd just find it heartbreaking!

Thank you cartwheels that has reassured me I hope I'm the same. I haven't bought a wig yet as don't want to feel like I'm tempting fate! Gutted about the legs I was looking forward to that part haha cx
Cartwheels
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Hope I can provide some reassurance, hair loss is so traumatic and not vain at all. I've used Paxman cold cap. 

 

I've had 3 cycles of FEC and pleased to report I still have quite a lot of hair. Put it this way, I haven't bothered to collect my wig yet! My hair was very thick, shoulder length with heavy fringe, and I loved it. About two weeks after first FEC it starting coming out quite heavily, and scalp itched. So, I took the plunge and got a pixie cut. It was a big deal for me, but made the hair loss more bearable (I was constantly vacuuming hairs and wore a hat in bed as I was losing so much overnight) and I thought would ease me in to going bald, if that was to be the outcome.

 

I've now completed all 3 FEC and am on docetaxol. My hair loss has slowed considerably. My hair is thin on the crown and at the back, but with skilful comb over it looks presentable and I do not need to wear wigs, hats or scarves. Although I wear a hat in the sun to prevent sunburn.

 

The cold cap is tough, but managaeable, and I am very glad I perservered. I may be lucky as my eyebrows and eye lashes have thinned, but not lost them completely (yet!). Not shaved my underarms in over two months, but leg hairs still growing! But I think we're all different. 

 

Good luck! x 

 

leanne
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

No, I moved on to taxol after (it wasn't any better!).  I finished in November and have got as far as a pixie with the new hair.  I think the hair going was the worst thing for me actually, although I had a hair replacement system which was glued to my head so I didn't have to see myself bald, that was a big help.

Melia
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Ah Leanne sorry to hear that. How far on are u now. I'm totally unprepared for losing it. I think if I don't think that way it won't happen 😕 were u on fec only xx
Melia
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Ah thank you. You sound like u have coped relatively well. I'm not sure I would. And I defo totally don't have the features for such a look haha.

I've already had a cap fitting I think I've got a strange shape head as the cap that fit at the sides and all over was loose on the top I think. I'm good to be terrible when I havw my treatment I'll be making them check loads. And it's not vanity our hairs out identity, I think I'd cry of someone said that to me xx
leanne
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

A couple of ladies I met at the hospital kept their hair/most of it.  One had very thick hair, which looked absolutely fine, another had thinner hair and had lost a bit on top but covered it with a hairband so you couldn't tell.  So it is possible.

 

Mine fell out after the first two unfortunately, it tends to get worse over time.  I think that's fairly normal.  It's always worth having a go with the cold cap, but a good idea to make preparations for it falling out just in case. 

desdemona
Member

Re: Anyone managed to keep hair with 6×fec and cold cap

Hello Melia,

When I was about to start my chemo (FEC-T) last September, I found some very reassuring posts on this forum about the cold cap and keeping your hair.  I was determined to keep mine if I could.  Sadly, I had my first massive hair fall out on day 19 after the first FEC using the cold cap.  I cold-capped for the second FEC, but had another hair loss event on day 19 again.  When I went in for the third FEC the nurse tactfully suggested that it was not really worth putting myself through the pain when I had already lost so much.  BUT I still suspect that the main issue was a badly fitted cold cap first time round.  I had a male nurse who implied that I was being vain worrying about my hair falling out.  The cap over the rubber bit did not fasten properly under my chin and, when I was going through treatment, I could press the top of the cap down closer to my scalp, when it should have fitted tightly.

 

So, my advice would be to look at the positive comments about the cold cap on the forum, make sure your cold cap fits properly on the very first occasion and, finally, accept that it still may not work and you may lose all your hair like me.  Horrid, but it really is temporary. Five months after ending treatment I now have a very trendy short 'crop' just like Kristen Stewart!  My husband loves it!

 

Good luck.

Melia
Member

Anyone managed to keep hair with 6×fec and cold cap

Anyone successfully cold capped and kept their hair doing fec. I know the fec is the worst for hair loss. I was feeling fairly positive about keeping it, last night I had my very long hair cut too shoulder length which has totally depressed me so not sure how I'll cope if i lose all my hair! I'm reading so many stories of people giving up after a couple of fec due too how much hair they have lost. Anyone been lucky enough too keep a fair covering? Also if I manage to keep a lot say for the first 2 does this mean I will be ok for the rest id be even more upset if I got to round 6 and it fell out. Please reassure me someone.