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FEC & Cold Cap & T

heyjude5891
Member

Re: FEC & Cold Cap & T

Hi Marie, I'm using the dignicap, just had FEC2 today. I started thinning on sun but no bald patches and seems to b slowing down a bit. My nurse said they've had good success with dignicap, they haven't had it long but 5 ladies have used it throughout treatment and didn't lose their hair, although did thin. X
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Re: FEC & Cold Cap & T

Hi Joey

 

Thank you so much for your reply.  

 

One of the truly wonderful nurses at my unit has arranged for me to go to their other unit where I can use the dignitara system. I am crossing fingers that it will really work and that I can keep most of my hair. 

 

Good luck with tax on your next cycle.

 

Marie 

Joeyv
Member

Re: FEC & Cold Cap & T

Hi Marie

I have been using the Paxman cold cap and have just had my 3rd cycle of fec. I have to wear the cap for 30 mins before and then 2 hrs after the f part of the fec. After my first cycle at able day 18 I had a large amount of hair loss for a period of about 6 days. I now have a bald spot on the top of my head where I think the cps did not touch the top of my head properly.

After the 2nd cycle I have not lost much additional hair although it is still thinning a bit. I am however pleased to have kept the hair I have and have been able to hide my bald patch under headbands scarves and hats without the thought that I look like I have cancer.

I am moving onto tax next cycle and will still be using the cps which I think will not be for as long. I did try a smaller cap this time after losing hair but it was too small. The nurse was great and spent a long time getting the outer cap to fit as tight as she could.

I hope this helps. If you have any more questions please ask and good luck x

Joeyv
Guest user
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Re: Experiences with different cold cap methods

Hi Lisa and all the other ladies

 

I am new to the forum so please forgive me if I am jumping into the middle of a conversation.

 

I was diagnosed in October and had a lumpectomy and my first cycle of FEC on 20th November.  I was offered the penguin cold cap at my unit, and haven't lost much hair yet although this might still follow as I my scalp is feeling a bit tender on the crown.

 

My concern about the Penguin cold cap was that it didn't seem to fit very well, had to be changed mid cycle for a new one from the freezer and was on before chemo for  only 20min, during chemo and only 20 min afterwards.  

 

I have looked at the different systems for scalp cooling that could possibly be available and they are Dignicap, Penguin and Paxman. Logic seems to dictate that Dignicap and Paxman which is a below freezing method and one that stays on for more or less an hour after chemo would be more effective.  Surely the longer your scalp is cooled after chemo - the more it restricts chemo's ability to reach the follicles? My unit is currently trialing all three across their two sites and will choose which one they purchase based on the trials.  I only know of one friend who used the Paxman system and although her hair thinned - she managed to keep most of it.

 

Has anyone had any positive/negative experiences with the different systems? From a purely personal perspective is there any system that anyone would recommend?

 

Thank you all you lovely ladies

 

 

Lisak
Member

Re: FEC & Cold Cap & T

Hi
Thanks for your replies. I will definitely try the gauze and let you know how i get on.
Its strange some nurses seem very enthustiastic about the CC but others really dont seem very interested. I have also found that there seems to be a great difference of opinion between the nurses about the length of time the cap needs to be on. I will say however that i havent found the cap too bad and would recommend giving it a go to anyone not sure about trying it. I have found it uncomfortable for the first 10 minutes and then its not too bad. I always wear warm clothes and take a blanket with me.
Thanks
Lisa
The
Member

Re: FEC & Cold Cap & T

Hi Lisak sorry you have had negative nurses regarding cold cap it really doesn't help!! As Tracy1967 says using gauze is recommended if any bald patches appear. I hope you can continue as you have nearly done it now Hun well done you!! Good luck xxx Tracy
The
Member

Re: FEC & Cold Cap & T

Joeyv just private message lulu on October optimists and she will join you up, it's totally private only is can see posts xxx Tracy
The
Member

Re: FEC & Cold Cap & T

Glad you are feeling better Joey I agree I think we will have plenty of ups and downs but together we will get there Hun! Have you joined our fb group? If not I'd def recommend it as we are all so supportive and it really helps to get you through take care Hun and good luck for 29th xxx Tracy
Tracy1967
Member

Re: FEC & Cold Cap & T

Hi Lisak,

I've not started my chemo yet but have done a lot of reading re the cold cap. The nurse can put gauze on your bald spot before applying the cold cap which will stop the burning and you should be able to continue your treatment. Good luck with your last 2 sessions. Tracy XXX
Lisak
Member

Re: FEC & Cold Cap & T

Hi Ladies
This is my first post to this forum and wondered if anyone had some advice about the cold cap. I am due to have my 5/6 FEC75 on the 29th and have been using the cold cap. I have a bald patch on the top of my head and my hair has thinned considerably on my left side. At my last chemo my nurse said that I shouldn't use the cold cap as I had a bald patch and that the cold would burn my skin. I said that I wanted to give it a go and didn't suffer any discomfort apart from the first ten minutes. I do feel that some nurses find the cold cap a nuisance and are quite reluctant to use it.
I just wondered if anyone else had been told that they couldn't use the cold cap due to bald patches. As I only have 2 sessions to go now I would like to persevere using the CC to the end. Also can anyone recommend what I can use to cover the bald patch so that the ice doesn't burn the skin
Thanks

Joeyv
Member

Re: FEC & Cold Cap & T

Hi Tracy

 

Thank you so much for your reply.  I have lost a lot of hair at the top of my head, it is very nearly bald.  I do think it is where my head is quite flat on the top and the cap obviously didn't fit well although it was a small!

 

I do still however have enough hair on my fringe and the back for it to have been worthwhile so far, I am able to wear head bands to cover the bald bit at the top.  I am going to see what the hair loss is like on the day of my next chemo 29/11 to decide if I have lost too much to continue with the cold cap, I have a haor appointment at the caring hair studio on Thurs and might have some of the length cut off and am thinking of getting a wig fitted just in case.

 

I think I hit a low spot when I last posted which I put down to the hair loss however I now wonder if it was just a low which I am sure will be repeated again during this process.

 

Thanks again, I have seen you on the October Optimists thread so might see you around on fb is you have joined

 

Joey

The
Member

Re: FEC & Cold Cap & T

Hi joey I am cold capping I have had 2 so far and due my next dose on Thursday. So sorry you are feeling down at the min. They did say to me it is Likely to shed quite a bit of hair. The first dose I didn't really notice any falling but from day 1 of 2nd dose I have lost loads every day and when I washed my hair loads came out which really worried me but it has been coming out quite evenly so no one can notice. I also had my hair cut to shoulder length as couldn't cope with having a really short style. I comb my hair with a wide toothed comb very gently as like you say hair was everywhere if I don't. I think in the pax man site it says the hair which comes out would have come out anyway but it helps not having it all over the place. When you have your next dose try and make sure the cap is a good tight fit at front sides and also on top so no movement when you push it down on top. If it does get them to try a different size cap. I hope the shedding eases off and you can carry on as I know how important it is to look as normal as possible. But I also know it doesn't work for everyone. I try to prepaid myself for this just in case but I don't think I can really. At least I can say to myself I tried and have you Hun I hope it works out for you joey fingers crossed xxx Tracy
June_BCC
Member

Re: FEC & Cold Cap & T

Hello Joeyv


Welcome to the forums, you've come to the right place for support as the users of this site have a wealth of experience and knowledge between them.

 

Maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

Joeyv
Member

Re: FEC & Cold Cap & T

Dear Ladies

 

I have just had my 2nd cycle (on Friday 8/11) of FEC-T 100  am having 6 in all as with most of you and have been cold capping, thought I was doing really well with no hair loss until week 3 after 1st cycle when the hair loss has been significant, now on day 4 of 2nd cycle I have a balding spot on the top of my head with lots of grey due to not being able to dye it!

 

It has been very difficult to deal with the hair loss as it feels so substantial and am now wondering if it is all worth it, but decided to continue to see how much hair falls out by the next treatment before making a decision.

 

I went to the caring hair studio just after my first cycle and they recommended that I kept my hair at shoulder length so that I could use the hair that was left to cover up any bald patches, now I am wondering if I should have cut it shorter as I am finding the amount of hair everywhere upsetting.

 

I decided to give the cold cap a go as I was not concerned about the extra time, wanted to not have the cancer bald head look (people who did not know me knowing I have cancer) and to spare my 8 year old daughter any additional anguish.

 

I have only been washing my hair once a week, have got a silk pillow case and am trying not to touch it too much, but do any of you ladies know whether combing it would actually make more hair fall out or whether those hairs would have fallen out anyway?  I wonder if I comb out the loose strands will it prevent them from being in my tea, my food, my jumper, everywhere!

 

Any help/support would be great right now as feeling more low about my hair than the cancer!

 

Joey

rhubarb
Member

Re: FEC & Cold Cap & T

Ladies thanks you so much for your support and comments. XXXX
Think i have lost 3/4 of my lovely long brown hair in week 3 of first chemo on FEC despite cold cap. Lost odd hairs about 4 days before 2nd cycle followed by 2 days of clumps, day 4 hardly any loss. Suggest ladies with long hair have it shortened as my long hair matted and I had to cut lumps out as it could not be unpicked. It was matted like some old tramp! Other side affects were various but not severe; metallic taste to mouth, constipation - for a few days (so have some tinned prunes ready), mild flu like symptoms first 72 hrs post treatment, odd naps, really dry mouth like old leather, ulcer x 1.
Just had 2nd cycle of FEC - cold cap was easier this time as I knew what to expect and just concerntrated on nice thoughts for the first 15mins to block out the pain. After that it is ok. Wore a smaller hat because of hair loss. Hope I don't lose much more. This time I had ice on my head! Bring cycle cycle 3 so I can say I'm halfway through and have finished FEC!
XX
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Re: FEC & Cold Cap & T

U too lols, had my second FEC today so fingers crossed although scared to touch it! don't dread it ull be fine:) im sending positive thoughts ur way:) x x x Great advice from all other ladies 🙂 good luck x x
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Re: FEC & Cold Cap & T

Hi - I too had 6 FECT and finished in February this year. The cold caps weren't pleasant but worth persevering with if you can. I began to lose quite a lot of my hair following FEC cycle 2, but kept using the cold caps and managed to keep most of mine. The caps have to be really tight and well fitting on your scalp for them to be effective though. I found it helped to have my long hair cut to just above shoulder length so that the cap fitted well, and I could still clip back my wispy bits.
Just take it one day at a time and treatment will be be over with in no time! X x
Lols
Member

Re: FEC & Cold Cap & T

Omg, dreading it, but want to get it over with x thanks for all advice
Daffodil66
Member

Re: FEC & Cold Cap & T

Hi, I finished my chemo 3 weeks ago, used the cold cap & now have a very short but growing very fast & thickening up head of hair. I had 6 fec-t 100, I don't know if the higher dose makes a difference to hair loss? I started to lose my hair on 2nd cycle & carried on then I managed to downsize to smaller cap which slowed down the hair loss. Before chemo I had my hair cut into a short bob, but should have probably gone shorter.I didn't clipper it until after my last chemo session as I was left with a friar tuck look where larger cap wasn't tight enough. I felt better for trimming it to one length but for some reason couldn't part with it up until then. Somebody I know used the cold cap successfully but she left her hair slightly longer & kept it in a loose pony tail but maybe her head was the perfect shape for the cap. I think it is worth using it because even like me you lose lots & have to wear a wig (Theres lots of realistic looking ones) your hair does grow back alot quicker. It must have worked as rest of body is still nice n smooth! It is a horrible traumatic time & I thought how can I be so vain at a time like this but on the days I felt well I didn't want to be reminded of my cancer. Good luck ladies it's definatley worth trying & stick with it xxx
Pollyanne
Member

Re: FEC & Cold Cap & T

Sound normal to me lols, I had a complete meltdown in the car after shopping for wide tooth comb and ph neutral skin and hair care ,sat clutching my plastic bag with tears streaming down my face like some loony bag lady, got hairdresser on Saturday going short so it's not such a shock if it goes. Never had short hair so that's gonna be another meltdown I guess. So wishing us all a few good hair days. Caroline your hair looks good, hope I do as well Lynda
Lols
Member

Re: FEC & Cold Cap & T

Ok will do, hope you hang onto your hair. I had my hair cut to shoulder last week at home, when hairdresser left I found myself sat on floor surrounded by cut hair crying , my OH came in crying to , cos I was!! And he tried to pick me up off floor, what the hells that all about, didnt cry after ops or as much with dx! Xx crap disease I hate it , xx hope cc works for you x
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Re: FEC & Cold Cap & T

Also I forgot to add that I suffer with headaches but I only felt pain for about the first 15 minutes then after that I felt fine, take sum paracetamol before hand and u should be fine:) x
Guest user
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Re: FEC & Cold Cap & T

Hi lols, I can totally relate to what ur saying and isn't daft, it's sad that we have to face losing our hair on top of everything else in fact it's just plain cruel:( we already have to fight so y can't we look normal whilst we're doing it?! It sounds ridiculous but I love my hair and that was my first thought when I was told I had cancer now that's daft! Hopefully we can get through this and keep some hair, good luck:) x
Julie_L
Member

Re: FEC & Cold Cap & T

Hi I have had 1 session of fec with cold cap, no hair loss yet but it has only been 6 days so need to wait and see. My problem is my hair is v fine and normally wash my hair most days whereas now I am restricted to twice a week so my hair looks r greasy and awful. Does anyone know if washing it more often so that I can feel normal will affect the hair loss?
Lols
Member

Re: FEC & Cold Cap & T

Thanks cazzer , not sure I'm going to handle it if I loose hair, sounds daft really with everything else we have to face , I'm planning to give cold cap a go get very bad headaches though, so will have to see how it goes. X
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Re: FEC & Cold Cap & T

Hi lols, im not sure if there is a particular hair type I think its more luck of the draw, all I can say is that its worth giving it a go as if u dont u know ull lose it pretty much anyway. As I said earlier my logic is that I would rather lose sum than all of it and have to grow it from scratch! I know I don't think the same as sum ladies on here who have shaved it all off, they are really brave and only wish I had the nerve, but like I say definitely worth a try, good luck:) x
Lols
Member

Re: FEC & Cold Cap & T

Hi, any particular hair type it works better for? I've got thick, wavy, curly hair had it cut to just above shoulder, don't want it any shorter . What's my chances of keeping it if I cold cap do any of you think who've been there or are doing it now? Thanks x
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Re: FEC & Cold Cap & T

Hi Caroline, thank u that really helps, I think I will persevere with it as I may as well see it through, the thought of seeing myself bald terrifies me so keeping some will be a bonus! I think ive lost about the same amount so like u im hoping the shedding will stop, I thought about using the aussie leave in conditioner so thanks for the tip:)
Good luck too and thank you again:) x
CEA49
Member

Re: FEC & Cold Cap & T

My scalp became really tender & itchy about a day or two before my hair started shedding. The first FEC was the worst then it steadily decreased throughout each chemo. i reckon i lost around 30%-40% of my hair overall, but I read somewhere that the average person has around 100,000 head hairs, so couldnt honestly tell you where 30-40,000 of them went to! my advice would be to stick with it for as long as you can. One thing is for sure: if you dont use the cold cap you will almost certainly lose your hair. of course, everyone's different and the cold cap doesnt come with a guarantee; i was extremely fortunate. Make sure the cc is as tight as you can handle. I also found Aussie Miracle Hair Insurance leave-in conditioner useful before & after. I forgot to say in my previous post that when you move onto Tax you dont need to wear the cold cap for as long as there is only one drug to be administered instead of 3 with a flush in between.
I 'only' had 3FEC and 3TAX so don't know what difference 8FEC-T would make.
good luck tomorrow.
Cx
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Re: FEC & Cold Cap & T

Hi Caroline, ive also tried the cold cap and after one FEC I have lost quite a bit, luckily I've got a lot of hair so most people don't notice, I have my second FEC tomorrow and have 2 more with 4xT after, can I ask if your scalp was tender and when did the hair loss start to slow? Im just worried that im wasting my time if im going to lose it anyway? I haven't had any on my pillow when I wake up but when I comb it quite a lot comes out in fact its amazed me that I have any left! Just wondered if this was the same for u? I don't want to give up as my thinking is it will grow back quicker if im not completely bald:( sorry for all the questions, thanks, Caroline
artemis17
Member

Re: FEC & Cold Cap & T

Hi there,
Just to wade in with my 2p worth...im having FEC-T x6, im about to have my 2nd dose and im cold capping, and havent lost any hair, on either head or body, and had hardly any side effects(which obviously isnt down to the cold cap). There are a couple of ladies who are "June Jewels" too who have cold capped and its not worked so well, so i think it depends on hair type, how well the cap fits and maybe just luck of the draw, but its certainly worth giving it a go.
:-)
CEA49
Member

Re: FEC & Cold Cap & T

Hi Rhubarb
i changed my mind at the last minute and decided to try the cold cap, thinking that if it didn't work then I would give up. I lost quite a bit of hair after my first FEC but it slowed down after later sessions and stopped coming out completely after my 5th chemo (2nd TAX). So I would say if you can put up with it, then it's worth persevering. A warning though : the 2nd chemo the cap does feel very cold as there is less hair to protect your scalp. You'll see from my pic what my hair was like at 6th chemo - and last week I had a family party & my small nephews & nieces didn't even notice (And they are usually the first to ask questions!). Everyone's different but I am so pleased I stuck with it. I still have a reasonably expensive wig stuffed in my wardrobe & am very grateful I haven't needed it, especially in this hot weathejust he hair that I did lose is just starting to grow back.
good luck with whatever you decide to do.
Caroline
Guest user
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Re: FEC & Cold Cap & T

Hi Rhubarb
I am of afro caribbean decent and I used the cold cap and kept all my hair, in fact I had it cut twice during chemo
kept my eyebrows until my last session of having 6 sessions of FECT . I finished chemo on 7th June and eyebrows now growing back 6 weeks later. Stick with cold cap if youcan, makes you feel normal after
Best wishes x
tracyld
Member

Re: FEC & Cold Cap & T

Hello Rhubarb,
I did the Cold Cap 3 years ago July 2010 and it worked very well for me. I did have small hair loss during FEC T and was originally not going to have the Taxotere , as like you I had read about more permanent side affects. However one of my Chemo nurses said that if I was in India I would be fighting for that drug to save my life , whether I lost my hair or not. I know she was a little harsh but it made me have the 3 cycles of Taxotere and yes I did lose all my hair everywhere on my body except my scalp which was protected by the cold cap!! It didnt feel too bad when we ladies can wear eyeliner and pencil in the eye brow.
Give it a go Rhubarb you have your life to gain , so dont worry about the loss of your eyebrows and eyelashes. Mine all grew back after the treatment ended.
Good luck with it all , let us all know how you get on. Sending you love and positive vibes. Tracy xxx
rhubarb
Member

FEC & Cold Cap & T

Hi,
I've had one cycle of FEC with a cold cap and recently got a wig for my Chemo, hair is just starting to come out. The hospital wig lady looked at the hair loss (odd strands) and said it was not too bad. She also said that hair loss with the cold cap plateau's - i.e. initially the treatment is a shock to the system and there is hair loss / thinning but then the loss it slows down. Is this true?
After 3 cycles of FEC I move onto T for 3 cycles. T side effect being loss of eyelashes and eyebrows. If I'm wearing a cold cap is this lose reduced? And if I've finished FEC - am I then left with any hair that I've managed to retain?
Thanks