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Hair Loss During Chemotherapy: My Journey With FEC-T

My hair, prior to chemo

My hair, prior to chemo

Hair Today, Gone Tomorrow?

Hmm... my hair? Let's see. I've never really been a great fan of my hair.

It's always been too thick, too coarse, and pretty unruly. I have this weird little cowlick that actually grows onto my forehead and curls under one side and over the other, which makes bobs impossible without meticulous styling. After having my children, I just let it grow and grow, and so it was soon pretty long. I would just always twist it up in a ponytail and get on with my day. When my brother got married, I had it all curled by my friend (also hairdresser), and it actually looked amazing with a bit of attention. I was secretly proud of its length, I guess, as a great many people paid a fortune to obtain hair extensions for the same effect.

My hair, prior to chemotherapy

My hair, prior to chemotherapy

But Then...

I was unfortunate enough to be diagnosed with breast cancer—but fortunate enough for it not to have spread. I knew I would face the ultimate triumvirate of chemotherapy, radiotherapy and hormone therapy and although it would not be easy, I was quite happy to endure this for the sake of extra longevity.

My cousin told me, "It's funny, the most distressing part of the whole cancer ordeal, is the hair-loss side of things". At the time, I dismissed her comments as just one of the things that people say to make you feel better, but now, I do really, truly think she is right.

I am having an EXTREMELY hard time with regards to my hair during this chemotherapy. I am practically obsessed with my hair. From someone who was not a typical girly-girl and did not do the whole constantly styling, hairdressing or colouring her hair thing, I have become pretty preoccupied with it!

I was told that I am lucky enough to be attending a hospital that has cold cap facilities, and if I should wish, I could make full use of this - so I did. Whether this is wise or not, remains to be seen, but it is mostly responsible for my obsession. If I was told hair loss was inevitable, perhaps I could get over this endless questioning that I am currently going through. I was told the chemotherapy regime that I would be having was notorious for hair loss, Fluorouracil/5FU, Epirubicin, Cyclophosphamide and Taxotere/Docetaxel (FEC-T) so I would be extremely fortunate should I not lose my hair. The odds were a third kept their hair, another third experience thinning and the remainder lose their hair. It also helped to have your hair cut short, my oncologist told me, so yet again, my helpful friend gave me a haircut prior to the chemo.

"But it does come back," I am constantly told. I can get a wig, or wear attractive hats or scarves. "It's not the end of the world!"

But it has become a major issue for me, and I never thought it would!

After Chemo Number One

I wore the cold cap, but was very distressed as I did not believe it had worked. The cold cap is rather like a cycle helmet - it actually reminded me of a horse jockey's hat - that is freezing cold. By wearing this during the chemotherapy transfusion, the hair follicles on the head are frozen and constrict and the idea is that the hair cells do not take on the full force of the chemo drugs, resulting in less hair loss. The day previous to my chemo, I went in to try one on for size - they have small, medium and large - and the nurse in charge simply did not believe that I could need a large size.

"I do have a rather large head" I told her. I knew this, because once, drunk and carefree, a group of friends and my brother all measured the circumference of our heads to see whose was the largest. My brother came first, followed by myself and then everyone else after us. We took it from that point on that it was simply a family trait!

The consequence of her disbelief meant that only a small and medium cap had been put "on ice" for me and I spent the whole time ramming the cap down onto my head as I was convinced it was not touching the crown of my head as it did not feel that cold. The Paxman machine for the cold caps need to be switched on a good many hours before they can be used, so a top tip to check they have been indeed switched on, is to call the Day Unit in the morning to check this has been done. They do have others in the freezer but these are manual ones and I have been told not as effective.

I came home with a crazy head full of iced up hair conditioner which they put on to conduct the cold better. I rinsed this off very gently in the sink and then proceeded to avoid touching my hair at all costs.

This soon changed about a week in though. I was constantly tugging at my hair and seeing whether anything had come out. At this stage, not a lot was. I have always had an awful habit when bored of running my fingers through my hair and collecting the loose, stray hairs. This was now in overdrive.

"Look!" I would exclaim to whoever was nearby. "Look at how much hair is coming out!".

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"Stop pulling it then!" would be the standard response but I really could not. I had a weird, morbid obsession with just gathering those loose, stray hairs. I would gather them into a little pile and just look at them. Poor little hairs...

Chemo Number 2 (Day 21)

I have now had the second session of chemotherapy, and I still have my hair (I am writing this on Day 30). It has started to fall out however, and I am unsure how much longer I will be able to keep it! I believe that I have done really well having it this long as most accounts state that it usually has gone about 2-3 weeks into the process. It seems that everyone's experience is different - some people's hair falls out in clumps within this period - it also seems the majority of people choose to shave it off around now to avoid the distress of watching it come out in the shower.

Limited Washing Seems to Help

I have been trying to only wash it once a week as it seems to me that washing it makes the fall out happen quicker. Perhaps the hairs are sealed in the follicles with dirt? I do not know for sure. I brush it once a day with a wide toothed comb and collect the hairs that come out and put them in a little bag (sad I know, but perhaps I can stuff a pillow with it one day?) I have bought some "dry hair shampoo" in the hope that perhaps I can use this instead of actual washing.

I am noticing more and more hairs on the floor of the kitchen and bathroom but I have not woken up to a pillow of hair yet...I am still hoping that the cold cap is working.

My partner still thinks he cannot tell the difference yet - but then he has always said that I am too hairy! The hairs under my armpits, legs and pubic region have thinned considerably - my bikini line has never looked so good! It seems to me like the hairs are not securely in the follicle anymore...if they are left, they just sit there, but when touched or tugged, they come out without any resistance. I keep thinking if I do not touch them, or wash them, perhaps I can keep them hanging in there until the chemo has finished...I am not yet halfway though so not sure if this is likely...or if I am fooling myself.

Silly to Feel Ashamed, But I Did!

I do not think anyone can really understand what it is like to lose your hair unless it happens to you. At first I felt really ashamed, like I did not want anyone to know, but as time passed, I grew used to the idea. I first wanted to buy a wig so that I could put it on and no one would know, but sitting in the chemotherapy waiting room last time, I observed the different approaches people were taking. There was one lady with a blonde wig on, and it seemed so obviously a wig. She had no eyebrows and looked frightful. Another lady walked in; she had a black headscarf, big chunky earrings and a full face of make up and she looked beautiful! Another lady had a wig on that I really thought was her natural hair. I also found an inspirational lady on YouTube who has alopecia and she was showing how to draw on eyebrows and she was amazingly beautiful, so it got me thinking perhaps I should just embrace it rather than try to hide away in a hot wig?

I did try some wigs on prior to the chemotherapy so I had some idea of what I was dealing with. But to me, I looked silly and could tell it was a wig. I think I would feel too self conscious wearing one, but they were more realistic looking than what I had imagined.

Here are three hairs protruding from the one follicle.

Here are three hairs protruding from the one follicle.

Here you can see normal hair colour, then the part where chemo has affected the hair.

Here you can see normal hair colour, then the part where chemo has affected the hair.

Following 2nd Chemo Session

I feel I have taken a "scientific approach" in my obsession of late. I am due to have my third chemotherapy session tomorrow, and as is my nature, to understand exactly what is happening, helps me cope with things. I have taken to examining the hairs that have already fallen from my head with great scrunity. It helps to look at the against a white surface. I have discovered that there seem to be three types of hair. One is held together at the root with another, or sometimes two other hairs. It is like I have more than one hair extruding from each follicle - perhaps this is why my hair is so thick?. It is like the hair follicle has just given up and dropped them all out. The second type of hair simply has a very small black part at the end. The third - and perhaps the most interesting type of hair of them all - has normal hair all the way along the shaft - then it appears to become transulcent and thinner - and then resumes back to normal hair again. I presume this to be where the chemotherapy has been in my system affecting my hair - and yet has managed to stay in and then resume growing again normally.

This might sound like an obvious thing, but to me, it has given me hope. It seems clear that my hair is still attached to my head - which is opposed to my previous theory of it just sitting in the follicle - but that is it is thinner and frailer than usual. However, if I can be gentle enough to my hair, then it is possible for it to "hang in there" literally, and then resume growing again in its usual strength. It seems to be a race against the chemo...if I can leave my hair alone and stop pulling on it, then perhaps there is a slim chance I can remain looking slightly "normal" while undergoing the chemotherapy which would help me cope with this whole process a great deal.

Still hanging in there... but for how long?

Still hanging in there... but for how long?

Chemo Number 3 (Day 48)

My third chemotherapy session was postponed due to my neutrophils being too low (they were 0.8 last week and have remained at this level a week later). My hair, despite appearing to be constantly falling out, is still at a reasonable level.

If you have ever had your hair in a too tight ponytail for too long, then you know the feeling you get when you finally release it. It is an odd sensation, and makes you want to scratch your head to rid yourself of it. I keep having this sporadically, although I have not tied my hair back in months! I am making a conscious effort to ignore it, but at times it is too hard to resist. I keep scouring the internet for tales of other people's hair loss and whether I am completely naïve to believe that I can keep my hair through this...some people lose their hair all in one go, either in the shower, or by brushing it out. Other people's hair falls out in clumps and they choose to shave it off. I am still hoping I will be luckier than most, but only time will tell. Perhaps another dose of the chemo will finish it off. I did notice a week after the second treatment, the hair loss rate was quite intense, but then it slowed down. I am still trying to not to wash my hair too often - I went almost two weeks last time, and you may think this is gross, but to me, I would rather have greasy, smelly hair than no hair at all!

I have also noticed that I do have quite a bit of dandruff building up along my parting too...and again, you may think gross, but I would rather have this than no hair. My scalp feels a bit tender in places but I am trying to ignore it...

I whole heartedly agree with my cousin now...the hair loss is more distressing to me than the loss of a breast...how messed up is that? I think that it is due to the fact that you can conceal from others this loss, but hair is such an obvious and visible part of us all. I will never hate my hair again, or have a bad hair day that is for sure - from this I will always appreciate it!

Approaching Chemo 4...

The number of days that have now elapsed eludes me, but I am due to have Chemo Number Four tomorrow. My hair is still there...I am losing hair daily that is true, but it is still there, and if you did not know me and just saw me in the street, you would not know there was anything wrong with me. I am feeling somewhat nervous though, as I have heard that the T part of the regime is more toxic. I have read on the internet that people's whose eyelashes and eyebrows remained, gave up and all fell out with this drug, so there is part of me that is getting mentally geared up for this. If it does all goes with the Docetaxel, then it goes...at least I have had it until now throughout the FEC. The summer is approaching, and I can just treat myself to a big summer hat if that is case! Photo to follow...

The itching and tight feeling of my hair has all but disappeared, I am suffering from a little dandruff but perhaps this is due to me not washing my hair as much as I normally did. As I am unable to use a hairdryer or straightners, my hair does look a little unkempt, but hey, it's there, and that is main thing!

Chemo Number 4

I was really quite scared about doing Chemo Number Four as this was the new drug - the Docetaxel, or "T" part of the regime. I had been explicitly warned this was harder to handle, but tried to ignore this and just get on with it.

My hair until this point was still there...looking rather messy, but a full covering nonetheless. I was sure my luck would run out with this drug - but the nurse on the ward who I voiced my fears to seemed to think that if I had success until now, then there was no need to worry. Yet again, I used the cold cap, and kept it on for an hour and half after the infusion and went home, thinking what will be will be.

As the chemotherapy cycles go on, I have noticed a slight pattern with regard to my hair. I have the chemo and wear the cold cap, then do not touch my hair for 24 hours after. This does sometimes mean that I have to pop out wearing a hat to cover my crazy hair, but so be it! After a good 24 hours have past, I then wash my hair by lying down in the bath, very quickly, with a mild baby shampoo (no conditioner), then gasp in horror at the sheer amount of hair accumulating in my hands. I then brush it very gently with a wide tooth comb, and then leave it. The next day again, just brush it very gently, and then leave it. No styling, no ponytails, no hairclips. I have started to notice that where my parting lies, my scalp is starting to show more and more, and I put this down where I brush my hair that way, the pulling motion of making a parting is taking its toll, so I try to move the parting a little, or even not have one.

A week after having the chemo, then comes the shedding. Whenever I look in the mirror at my back, I can see quite a lot of hair clinging in the hood of my top, or the back of my cardigan and every time I think I have had it, my hair is just going to go. This continues for a few days, but I just ignore it, and then it calms down again and I only really lose hair when I brush or tug at it. I try to only wash it in water once a week as I feel washing really contributes to the hair loss and if my hair gets really greasy in the meantime then I use a dry shampoo, such as Batiste (costs around £3.99) just to give it a little boost. I have not had a occurrence of the intense itching I felt, or of that too tight feeling again. I sometimes get a little shivery feeling, a little "rush" over my scalp, and I fear it is all going to drop out, but it does not.

Just before Round 5 of chemo

Just before Round 5 of chemo

Chemo Number 5

I have just had Chemo Number Five and I can honestly say I still have a full head of hair. I took a photo of it just before I was due to go into the Day Room for treatment. It is very thin; it is pretty messy; but it is still there! You would just think I was a harassed Mother of two children under 5 without a moment to herself - which I am - without time to spend on grooming. It is only now, at this point, that I am letting myself believe that it IS possible that I may not lose my hair and I am finally feeling the relief!

I think it would probably look better if I had a little trim up from my friend, but truth be told, I am scared to let anyone touch it. Hairdressers like to brush the hair out before they trim it, and it would be horrific to see it all falling out for the sake of a trim. So I chose to leave it looking ragged. But it is STILL THERE which is all I am concerned about! Compared to my previous hair, it looks atrocious but I really do not mind. My eyelashes have thinned too but are still there to beef up with mascara and my eyebrows are fine.

With regards to "other" hair - I can state that my underarm hair had all but vanished, my leg hair stopped growing as did my pubic hair (which was great!) - a gentle tug and it was gone! However, on dose 5, these are all starting to grow again and I am becoming somewhat stubbly!

Two weeks after my last chemo session

Two weeks after my last chemo session

Chemo 6: The Final One!

I still have my hair! I am writing this two weeks after having had Chemo Number 6 and it is terribly thin and ratty at the bottom but I still have a full head of hair! I simply cannot wait until next week when I am going to get it cut in a nice short style. I want to wait until next week until all of the shedding has stopped. I think for the most part it has, and indeed, I am actually feeling confident enough to twist my strands around and clip it up at the back and I look almost normal! My eyebrows have thinned as have my eyelashes, but they are still there to work some magic with make-up.

I think if I had had my hair cut to begin with in a very short boyish style, I might have even fared even better with the cold cap, but because it was cut just above the shoulder, the hair loss noticed more. But there were no bald spots, so my experience of using the cold cap really worked!

Very, very pleased!

Postscript

I would just like to add that I am lucky enough for my breast cancer to have been caught early—and despite it being a high-grade cancer, I was fortunate enough to find it in time before it had spread. I am sure that if I had more of a battle of my hands then I would not be so preoccupied with my hair and I am sure, that in a way, it is more of a distraction for me than the real issue at hand.

I would just like to reiterate this in case I am running the risk of appearing fickle with this article, but I know that I have spent a great deal of time searching the Internet looking for information on hair loss; when exactly did people's hair fall out; how this actually happened and whether there are any success stories of using the cold cap.

I hope that this article is informative in this respect and will be of use to others following the same chemotherapy.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2012 Nicole Forman

Comments

Nicole Forman (author) from South East England on May 04, 2021:

Hi Suzy! I saw your comment was written 5 years ago...blimey! Anyway - just to answer you - I DID paint my nails a dark red which I do believe helped. At the moment, this whole sorry saga occurred around eleven years ago and still having yearly check-ups...so far so good. I will never completely relax and assume that I am cancer-free and it will never come back. But at the moment, all is well. I hope that you are too? I am glad what was a therapeutic aid for me to use a crutch helped you out - genuinely happy about that! Sending you lots of love xx

Suzy on August 10, 2015:

Hi

I just wanted to say what a huge help your blog has been to me. I am having T number five tomorrow out of five FEC-Ts so feel like I am almost there. My hair has behaved the same as yours so far and you have given me hope that it may stay the course. I too was never that bothered about my hair until I thought I might loose it and I have become obsessed! By the way, did you paint your nails black during the T - I've heard it helps stop any nail problems..... Anyway, it would be good to hear how you are doing now, some time on if you still check this? Suzy

Nicole Forman (author) from South East England on October 13, 2014:

Hello Trish! I am so sorry that I have not been on this site for a while and just saw your post. I expect by now you are well underway with your treatment and really hope that is going well. Fingers crossed you get to keep your hair as it really does make all the difference xx Good luck xx

Trish on June 18, 2014:

Thanks for all of the insight and personal stories. I am about to start the same treatment - FEC/D plus Herceptin. I am scared to death of what will happen as I go through this ordeal but reading your story helped. I know my side effects could be completely different but I prefer to be informed about what may happen. With regards to the hair loss, I've been told by the nurses and doctors that it is the FEC that causes the loss and not the D. That in fact, once the 3 treatments of the FEC are completed the hair could start to grow back. I've never heard of the cold caps but I am looking into whether they offer them at my clinic. Thanks again for sharing.

carolh on March 16, 2013:

hi earthymother, its weird how you have no body hair for months then overnight it seems to spring up everywhere! Yes you are right it grows back tufty it must be the areas the cold cap misses I have some normal hair and some that resembles boiled wool, but it is so great to be able to man handle your hair without it falling out in chunks, plus the cold weather has been a blessing going out with my Russian hat, so I look like I am making a fashion statement rather than a bad hair day/month. I have nearly finished radiotherapy and should be going back to work then there will be no time to look at my tablet, but it's a weird feeling of being through the wars when my fellow members of staff have been plodding on the same routine. Take care happy hubbing. carolh

carolh on January 22, 2013:

hi earth mother, thank you for your positive outlook, I know it will eventually grow but I am a bit impatient plus I had a lovely dress Christmas but my hair looked pants! After radiotherapy I have to start taking arimidex unlike tamoxifen which blocks oestrogen it stops the body producing it which can cause male characteristics such as male pattern baldness, could I put up with this? I suppose if its the choice of cancer coming back you have to grit your teeth and bare it, I remember what you said about health professionals yes I had a twenty something cheerfully going through all the side effects this is obviously what you are taught on the one day course on keeping the patient happy! X

Nicole Forman (author) from South East England on January 22, 2013:

Hey Carol - well, it's now January and I would definitely say my hair is back to normal...very thick and I coloured it last month! I think I finished my chemo in September last year, and had it cut in a boy's style hairstyle about October I think. It took me a while to feel comfortable washing it, and once I could do so without it coming away was the time I went to the hairdresser. It is now bob length, and I coloured it a plum colour for Christmas and it looks great! I have to say that I am blow drying it and straightening it and it's all fine...I was a little nervous before colouring it, in case it all broke off (I don't know if you can see on your individual hairs, but I could see graduation marks along the hairs where I had obviously had a chemo session) but it was absolutely fine! It feels so great to be able to wash and dry my hair without worrying about it coming away. I would say that my hair took a couple of weeks to grow through and there was a couple of months where it looked a little "tufty" as the new hairs sprouted upwards... :o) Once you have a little trim at the hairdressers you'll feel a million times better - I know I did! I didn't feel very feminine as I've always had long hair and I felt a little boyish, but I looked like I just had a bad hair cut rather than there being anything wrong with me, which suited me just fine!! Well done for getting through the chemo Carol and wishing you all the best and speedy hair growth! xx

carolh on January 22, 2013:

Dear Earthy Mother, I have now decided to stop FEC my hair is still very fragile and seems to have long hair and some woolley shorter stuff I think I might cut it shorter to catch up but what I want to ask is how long did it take for your hair to start to grow through and feel more like your normal hair and have you coloured it?

Nicole Forman (author) from South East England on January 02, 2013:

Good luck Jo! Wishing you all the very best...I hope you have success with the cold cap and that you keep as much hair as you can. I think if I had cut my hair ultra short the cap would've worked even better, so fingers crossed yours hangs in there. Take care xx

Jo on January 02, 2013:

Thank you SO much for your blog, I am starting Chemo on Friday and opting to use the cold cap. My lovely hair is short now-was my best featutre. I am ultra sensitive about my hair so thanks for your personal journey.