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FEC & Cold Cap & T

134 REPLIES 134
Sue58
Member

Re: FEC & Cold Cap & T

Blondy9
Hi, don't worry. I lost loads round about my 2nd chemo and thought I was going to loose the lot..preserve. ..you will lose a lot just before second chemo oor there abouts..!! , its quite frightening...but. I didn't lose much more after that..it continues to shed daily. I'm now just about to go for number 4 chemo in 9 days and I'm still cold capping..I've lost about 50% of my hair..its very thin and I have a thin patch on my crown and top of my head with a bit if hair covering it.. I had hoped for better results. But I still havnt worn my wig or a scarf when out. If you didn't know me you would just think I had very thin hair or alopecia...you will lose a fair bit of hair.. but try and carry on cold capping if you can...good luck. Sue x
Blondy9
Member

Re: FEC & Cold Cap & T

Hi I have had my first treatment due my next one on the 13th I used the cold cap but now my hair is falling out quite a bit and getting thinner really scared
Chen-boy10
Member

Re: FEC & Cold Cap & T

Hi Tracey, I gave just read your post about you kept your hair after 6 cycles of fec, how fantastic! I had my first fec 9 days ago with another 5 to go and everything I read implies that if you have all fec then you won't keep your hair even with the coldcap which has made me feel so disheartened as like so many others it is a huge deal to me losing my hair I am terrified ...any tips please? Many thanks xxxx

Nattyoo
Member

Re: FEC & Cold Cap & T

Hi, I've just got 2x tax to go and then hopefully finished for ever!
I had a single mastectomy and full node clearance last Christmas and will have had 6 cycles of chemo.
The Tax is very tiring; I imagine it's going to take some time to get my energy back to do more than just the basics each day.
I can't wait until it isn't the main thing I think about each day. Whilst I'm not over anxious about the cancer returning, or the effects of the surgery, the chemo seems to have been all- consuming.
Your process has been longer than mine- it'll have been almost a year for you? Best wishes for the reconstruction. Do you have plans for next year?
Natalie x
Nattyoo
Member

Re: FEC & Cold Cap & T

Sorry, Padfoot, I've just replied to you on another thread! Good luck!
Lucy_BCC
Member

Re: FEC & Cold Cap & T

Hi PadFoot and welcome to the BCC forums, in addition to the support here please feel free to call our helpliners for further support and information. Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

I am posting a link to the treatments area of the site where you will find lots of information and support ideas which I hope you will find helpful:

https://www.breastcancercare.org.uk/treatment

Take care
Lucy BCC

PadFoot
Member

Re: FEC & Cold Cap & T

Hi
It's so good to hear how well you are doing. I have just started the same treatment as you. I had first chemo 10 days ago. Although I an really tired it wasn't as bad as I expected. I hope I hold onto my hair too the cap hurts a bit but I will persevere, especially after hearing your great feedback. I hope it all continues to go well for you.
riversidedawn
Member

Re: FEC & Cold Cap & T

Hi Natalie, great to be over the chemo, but have reconstruction and radiotherapy to go, so should be done by end of July!! this all started in September 2014 so I'm getting pretty bored of it, how about you?

 

Nattyoo
Member

Re: FEC & Cold Cap & T

Congratulations on finishing chemo Dawn. It must feel great to get better and better without facing another cycle. Very best wishes to you for a full and healthy recovery, Natalie x
riversidedawn
Member

Re: FEC & Cold Cap & T

Lovely post Nattyoo. Ii am now 2 weeks post chemo, I managed 14 cold caps in total (3 x 3 weekly FEC and 11 x weekly Paclitaxol). So glad my Friday appointment with the freezer has stopped! But like you I have a good head of hair, if you don't know me you wouldn't know what I'm been through. It's pretty thin and on top is short where hair just snapped off, but I have a good covering of a short bob and it's all mine!

 

Somehow I still also have eyebrows and eyelashes, although my lower bottom lids only have 4-5 hairs each. Eyebrows have thinned and are much lighter in colour - I think all my coloured hair has fallen out and the grey has remained. Good luck to all, it's worth it if you can tolerate it x

 

Nattyoo
Member

Re: FEC & Cold Cap & T

Hello,
I've had 3 x FEC and 1x Docetaxol and am due my next dose this week.
I have used the cold cap and still have a head of hair. People wouldnt know I'm having chemo.
It has thinned considerably and at times I can run my fingers through and it seems at though I have a full hand of hair. I have short hair but with long layers and with a bit of fluffing up it looks normal. I wash it once a week or so, use a mild shampoo and only comb it with a wide toothed comb if I'm going out. I am not working so don't have the pressure of having to keep my hair looking good on a day to day basis. Some days it looks pretty bad!
For me, the benefits of having hair have been significant. I don't think I'm a vain person, but it has kept me feeling like me, and has kept my spirits up. After the first week of feeling grotty and not going out, I make a determined effort to make the most of the two weeks before the next treatment. On day 8 or 9, I get dressed, put make up on and go and meet friends for coffee. My friends know I'm having chemo, but when I'm out, no one would guess. I feel a bit vulnerable being out alone sometimes, especially if I'm feeling emotional,and having hair and looking 'my normal self' helps me feel anonymous.
At home, when the makeup is off and I'm in my pyjamas, and the reality of bc and chemo come back (sometimes, it seems as though it's all my husband and I have talked about for the past 4 months) I know that if I didn't have hair, I'd feel the reminder of the bc and treatment would face me every time I look in the mirror.
I guess, having my hair helps me forget For a time between treatments.
I take a strong painkiller half an hour before chemo and haven't felt too much discomfort. I suck lollies to help my mouth and take icecubes in a flask and hold them in tissues on my eyebrows a bit. Cold capping my brows! I still have my brows and eyelashes although they thinned after chemo 4.
I know the cold cap isn't for everyone, I'm sure it makes me feel sick at the thought of hospital and strangely I feel sick when I take anything out of the freezer, but it hasn't been too bad. My bcn is extremely well organised and takes time to fit it properly etc and makes sure I get lunch after treatment during the extra 1.5 hours I have to sit with it on.
We are all on such individual paths with our treatment and we need to prioritise what's important for ourselves. One of my main worries with diagnosis and treatment was that I would fall into a depression and feeling positive has been my main focus throughout. I guess trying to keep my hair has helped with this.
Good luck everyone. Very best wishes.

riversidedawn
Member

Re: FEC & Cold Cap & T

By the way fatpud and others, I did 3 x 3-weekly fec, I'm now in weekly tax and have dine 6 so far out of 12, so that's 9 cold caps so far, 6 weeks to go so its doable you get used to it after 10 mins. I too use a headband on ears and forehead, have lots if layers to hand but so far haven't needed blankets or hot water bottles.
marli
Member

Re: FEC & Cold Cap & T

Hi Fatpud - I am having 6 x Taxotere, herceptin and pertumzmab and had Round 4 on Wednesday. I have used the cold cap and am really pleased with the result so far. I keep my hair short normally and have retained most of it although it has thinned.I bought some "fill-in" powder which I brush on to shade in a th couple of thinning patches, especially the side-burns and it looks fine to go out. Wash it once a week or if going somewhere special. Lost all of mine 5 years ago and was very keen to try to keep it this time.

I lost the most the first time and a little less the second. Now it only a little more than normal. Try not to give up if it starts shedding because it does seem to slow down a lot.

I too take a couple of paracetamol an hour before the cap goes on and have a towelling band around my hairline and try to drink lots of hot drinks and do not feel too bad.

Good luck to all those using the cold cap - hope it works for you.  Marli x

riversidedawn
Member

Re: FEC & Cold Cap & T

Fatoud, I think you're doing well if no hair loss after number 2. Mine went after fec1, haven't had any significant loss since
Fatpud
Member

Re: FEC & Cold Cap & T

Had my second treatment yesterday. On advice of another member I took a strong pain killer half an hour before putting on cold cap. Still very uncomfortable but not nearly as bad as the first time. No hair loss to date. Not sure if I should build my hopes up as it is still early days. As always good luck to all out there undergoing treatment. Although I am well in the middle of last cycle I picked up a cold bug. I felt really really **bleep**ty for over a week. Got some antibiotics which helped to clear it up. Hope I can stear clear of all germs this time.
Tinkerbell72
Member

Re: FEC & Cold Cap & T

Yeah I agree all positive thinking although can be tough when you feel so rubbish!! Day 7 today and starting to feel a bit normal ready to start gearing up for next session. Good idea to take tabs prior to cold cap will defo do that next time. I getting on the juicing the next week now.
riversidedawn
Member

Re: FEC & Cold Cap & T

Absolute position thinking ladies. I've now done 9 sessions and 6 more to go! 12 weekly taxols a real pain but less SEs. I take tramadol 1/2 hour before cold cap and I find that sees me through. Keep going it's worth it.
BMM
Member

Re: FEC & Cold Cap & T

HinTinkerbell,
Hope you will continue to feel better for rest of first cycle. I am not looking forward to next cold cap and chemo as feel so well at moment. Positive thinking I am told. X
Tinkerbell72
Member

Re: FEC & Cold Cap & T

That good to know thanks
riversidedawn
Member

Re: FEC & Cold Cap & T

That sounds great BMM, somewhere around day 14-17 was when I lost what I lost after the first round of FEC. That was back in November and I still have a full(ish) head of hair! It's a bit thin and limp but I have a full covering (probably lost a third to half of the weight and some bits broke off so my bob has some 2 inch bits on top!). I didn't lose any after 2nd or 3rd FEC and am now half way through weekly taxol. I've got my wig for high days and holidays as I keep my thin hair in a boring ponytail/bun on other days.

 

Tinkerbell, you're over the worst now for SEs (as far as I had on FEC anyway) hope the hair stays put. Don't despair if you lose some over the next week or so. Keep going, it's worth it. x

Tinkerbell72
Member

Re: FEC & Cold Cap & T

That is great to hear I sm day 6 after first fec and today starting to feel brighter hope it continues. Also tried cold cap and so far so good !!
June_BCC
Member

Re: FEC & Cold Cap & T

Hello  BMM

 

Welcome to the forums. 
Just to let you know we have a helpline should you want any support or practical information, the free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

 

Best wishes

June, moderator

BMM
Member

Re: FEC & Cold Cap & T

Hello, newbie here! I had my first round of FEC-T on 11th Feb and tried cold cap. Made the whole process much longer but am on day 16 and so far so good! Have chosen a wig and have it with me now just in case.
This is my third week before 2nd round next Wednesday and it has been a great week. After the nausea, headaches, aching limbs and most ulcers, I actually feel like myself this week😄
Carmen42
Member

Re: FEC & Cold Cap & T

Hi all,
It's now 4 weeks from first FEC and scalp cooling. Last Thursday night hubby and I cut my shoulder length hair into a just below the ears bob which looked so much better as the lengths of hair looked really ratty and I have a huge baldy patch on top! However, the hair has continued to come out so this morning I had a number 8 all over and again it looks so much better! It's nice to be in control of the diminishing hair but tomorrow is my second cycle (assuming it goes ahead) and I've made the hard decision not to scalp cool again, so bye bye hair 🙂

Wishing you all well in the battle against hair loss!
Tinkerbell72
Member

Re: FEC & Cold Cap & T

Thank you will do
riversidedawn
Member

Re: FEC & Cold Cap & T

Mainly sickness and tiredness Tinkerbell. Keep taking the anti sickness meds for five days even if you don't feel sick.
Tinkerbell72
Member

Re: FEC & Cold Cap & T

Well 1st fec yesterday and cold cap in !! Flipping painful but kept it on all through out. Got lots of sickness meds get me through hopefully first day. Any one experience yucky side effects 1st round ??
riversidedawn
Member

Re: FEC & Cold Cap & T

As I've said before on here, I lost hair after first FEC got my wig and thought of cutting it short but since then I haven't list any and I've had 3 FEC and 3 taxol so definitely worth persevering with scalp cooling.
Carmen42
Member

Re: FEC & Cold Cap & T

Hi Hazel and everyone else 🙂
Thanks for info about the PICC line, mines being put in on Friday before 2nd FEC on Monday. My veins are hard to access and the bruises I've had from chemo nurses and A&E are huge! It's good to know what to expect.

This week (week 3) I've been feeling so much better, more energy and more positive about treatment. I've also done two Pilates classes this week which has made me feel more like me again 🙂

My hair is coming out steadily now, I have a hairball the size of a hamster just from today... in a way I'm quite relieved if I don't have to do scalp cooling again. ( I know the hair loss might slow down yet and I haven't actually lost a noticeable amount, but tbh I think anything that makes chemo easier for me is a good thing and no cooling is easier!)

I've ordered a good selection of head wear from annabandana, good prices and fast delivery... definitely recommend them.

Take it easy everyone, Carmen xx
Hazelr
Member

Re: FEC & Cold Cap & T

My hair was coming out in handfuls 2 weeks after first fec even though I had cold cap so I was so distressed by handfuls coming out I went and had a wig fitted and my hair cut to one inch all over which felt so much better. My veins were really painful during first fec so I had a picc line put in the day before my 2nd fec. The procedure was fine but no one really told me heat to expect with the line. It as fixed in place with a securacath which is like a metal pin in the skin and a plastic bit attached to the line. It was pulling every time I moved so I didn't move my arm at all and after 6 days of that I panicked one night as my shoulder and upper arm had pain which was caused by my not moving it. I went to a and e and the checked out it was stil in place and after 4 hours went home feeling exhausted but better that it was all ok. I tried to get some info on line about what to expect from the picc line but nothing really out there. If I knew that it would be 2 to 3 weeks until it settled down it would have saved me a lot of anxiety. I hope yours is ok for you and the chemo and blood tests are easy now, no pain or discomfort. Much better with no cold cap as well. The side effects do build up though so felt really horrible the last 2. I hope tis is useful info for you on the picc line. Good wishes to you xx
Carmen42
Member

Re: FEC & Cold Cap & T

Day 16... hair loss starting, only a few strands at the moment... 🙂
marli
Member

Re: FEC & Cold Cap & T

Morning ladies. Day 7 after 3rd Taxotere and using cold cap . Still have a lot of hair although sideburns disappeared after 1st round. Slightly thin in one place to side of top of head.I have always had short hair and had it cut a little shorter to ensure good contact with the cold cap. Seemed to shed a lot the first 2 rounds but this time it has slowed down. I am very pleased I am using the cold cap and will continue for the next 3 sessions.

I am using a brown powder to fill in sideburns and the top of head. I bought it from Amazon and it was only £5.99 -it comes in a compact with a brush and is available in different colours and must say I am happy with it. Also take my usual hair, nail and skin supplement from Tesco with the permission of my onc. in the hope of quicker return to normal after chemo finishes.

In awe of all you ladies coping with this and children. Give yourselves a big pat on the back. lol. Marli x

riversidedawn
Member

Re: FEC & Cold Cap & T

Hi Helens, someone mentioned a coloured dry shampoo available on amazon, sorry I don't know the name as I've not used it. Hope op goes well.
sherrifh
Member

Re: FEC & Cold Cap & T

Hi there

I am going to hospital on a week to get lymph nodes removed. I am 40 with a 4 and 5 year old. I had dais and a mastectomy in 2011. Then routine mammogram in November found two tumours and had reconstruction both times with my own donor tissue. I got my results on Wednesday and cancer found in sentinel node so clearance booked.in then fec chemo. I'm looking for any hints or tips and the. Name of the brown stuff in a shaker you put on your hair. I'm 😰. Helene xx

Tinkerbell72
Member

Re: FEC & Cold Cap & T

Ok great I do have low bp usually so wil ensure drink as much as I can thanks
Carmen42
Member

Re: FEC & Cold Cap & T

I bought 2l bottles to make sure I had at least that much daily, for first 3-4 days. Tbh I felt constantly thirsty so it was easy to drink loads! Chemo meds made my blood pressure really low so for me fluids and salt were essential.

Tinkerbell72
Member

Re: FEC & Cold Cap & T

Water ..ok first few days after 1st round ?
Carmen42
Member

Re: FEC & Cold Cap & T

It is scary. My 2nd cycle is the week before your first. I'm hoping it goes well.
Drink lots of water for the first few days.
Tinkerbell72
Member

Re: FEC & Cold Cap & T

Well done day 14 keep fingers x for you!! I due to start my chemo 20th dreading it
Carmen42
Member

Re: FEC & Cold Cap & T

Fab! We all have similar aged children. It's hard for them having to go through this with us, but so far my two are doing ok. The older one is being an absolute star and helping out in the kitchen, he's a veg prepping machine 🙂

Day 14 now and no sign of hair loss on my head (so far), although hair elsewhere is shedding! So far a big YAY for scalp cooling... fingers crossed for the next 7 days 🙂
Tinkerbell72
Member

Re: FEC & Cold Cap & T

I have twin girls 8 and 14 year old boy who have all been great. One of the girls had a little wobble after my surgery but they seem ok now. Not sure with chemo though
waiting
Member

Re: FEC & Cold Cap & T

 

Carmen42
Member

Re: FEC & Cold Cap & T

Tinkerbell - I found the waiting for chemo so hard, I was terrified, cried all the time, was very much "poor me". I feel better having got over the side effects of the first one. How old are your kids?
Carmen42
Member

Re: FEC & Cold Cap & T

Two boys, 13 & 12. 13 year old has ADHD, 12 year old is borderline ASD (autism)... hard work!!
We're going to Center Parcs for Feb half term, immediately after my 2nd FEC, where I'll probably stay in the lodge all week while hubby runs around with the boys!

I can't imagine having to look after them all while recovering from chemo, I was a complete zombie for over a week! I wish you luck xx
riversidedawn
Member

Re: FEC & Cold Cap & T

Funny how we've gone of the subject of hair loss!!!! X
riversidedawn
Member

Re: FEC & Cold Cap & T

That sounds good Carmen i was worriec about a big delay to put in expander, pump up and then start radio but hopefully we can crack on! Worried about further infection though.

How old are your kids? Mine are 9 and 12. Hubby had taken holiday when chemo has fallen in school hols but easter and june half term hes likely to be bedbound so I'Ll have last 2chemo running around after him and kids whilst plannung my surgery and radio !!!
Tinkerbell72
Member

Re: FEC & Cold Cap & T

Yeah I have 3 children and I think it ha d holidays or in school with homework etc. not quite sure what my recon will look like so for now have to do with pros. Got lots if appointment this week in readiness for chemo 20th scary stuff now x
Carmen42
Member

Re: FEC & Cold Cap & T

I had immediate reconstruction with my mastectomy surgery, it was supposed to be a silicone implant with some kind of supporting mesh but because my tumour was very close to the skin they were worried that they'd have to go back and remove more skin so they put in the expander.
Surgery was 11th December and it was partially inflated at the time. I then had two lots of 100ml saline added on 24th and 30th December, but this was quick as I already had enough skin, so no stretching needed! Hope this makes sense.

Apparently it's quite simple surgery to exchange the expander for the silicone implant but have to wait until after chemo.

Will phone LGFB next week 🙂

It's hard to coordinate everything with school hols isn't it? My hubby is probably going to have to take unpaid leave to be home for Easter hols/May half term 😞
Tinkerbell72
Member

Re: FEC & Cold Cap & T

Crikey you be busy then will have a look at that book x
riversidedawn
Member

Re: FEC & Cold Cap & T

There's a risk of implant or skin hardening but im going to take the risk. I was recommended a book "The breast reconstruction guidebook" by Kathy Steligo on Amazon, which goes into detail all options. its worth a read. Im seeing surgeon in a few weeks to finalise - im also trying to coordinate chemo, recon and radio around husbands kned replacement and kids off on Easter hols or half term!!