Sunday, 29 March 2015

Everything I've learned about... Chemo and hair loss

I originally wrote this post in October - about halfway through chemo. It's now March, and I finished chemo almost 4 months ago. I thought it was about time I updated this because I have some important things to add and change!

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If you want to know how to do cold capping right...

First of all, before I say anything else, if you want the most useful blog post about cold capping on chemo in the world, ever, then head on over to A Lil Earthquake's blog post Keeping my hair through chemo. Diane cold capped through 6 cycles of FEC. FEC is the chemo that REALLY has it in for your beautiful hair. Diane kept most of hers - she followed the rules, took amazing care of her scalp, and was rewarded with great results (unlike me who broke all the rules because I was convinced it wouldn't work, and so probably lost most of my hair due to my own tugging!)

This is Diane's hair after 6 cycles of FEC...


Amazing! Now go and read her blog!

As for me, despite losing most of my hair in the end after chemo, I learned some very important things along the way, and I want to share them here....

My personal perspective and experience

A couple of key things to know from the outset are:
  • I am someone who would have done literally anything to avoid shaving their head. I am full of admiration for the many young women facing chemo who are brave enough to take control and just shave their heads and be done with it. But it turned out, I am not one of those women. 
  • I've been completely honest in this post, and I'm writing as someone who found hair loss traumatic, so if you're reading this because you're starting chemo and are anxious about hair loss, be aware this post isn't intended to cheer you up no matter what - it's intended to tell you the truth, no sugar coating! Having said that, I hope that ultimately this might cheer you up - not because I'm going to throw loads of motivational, empowering quotes at you, but because of the info I will share that might actually be useful.
This was my hair right at the beginning of chemo. (3 days after my first chemo to be exact!)..

I had 6 cycles of chemo, FEC-T (3 FEC and 3 Tax). I used the cold cap each time. This is a summary of what happened to my hair.

Chemo #1
As the clock struck midnight between days 13 and 14, the hair started dropping out from around my ears. "This is it!" I thought to myself. The cold cap didn't work, and all my hair is all going to come out. I stayed awake til about 3 am, pulling at my hair. The hair by my ears came out very easily, the rest of it did not. Important note: I should not have been pulling at it!

Here's horrendous photo number 1! This is my (greasy) hair that night when it started falling out from by my ears. To me this was disaster.


Over the coming days, I lost more - on the top of my head my parting widened, and at the bottom of my hairline where it meets my neck a fair bit of hair was coming out. Each day, I kept tugging and pulling at it. Important note: I should not have been pulling at it!

Not so horrendous photo number 2. I was so devastated by this at the time I was too embarrassed to show anyone! This was taken at the end of the first cycle of chemo.


I look back at this now and see amazing hair with just a wide parting on the top.

Chemo #2
So to my surprise, the day of my second chemo arrived and apart from the hair by my ears and neckline, and the wide parting, I still had a full head of hair, and went ahead with using the cold cap for a second time.

I lost some more during the second cycle of chemo, but not so much - and with hindsight it was probably all my own fault for constantly tugging at it. The parting on top of my head continued to widen.


Chemo#3
While I'd lost a fair bit of hair, I could still tie it back and cover the ever growing bald patch, so I kept on with the cold cap. By the end of chemo #3 this is where I was at...(it's wet hair, that's not grease!)

Chemo #4
This is a photo of me just after my fourth chemo. To me, my hair was noticeably thin, and I had to tie it back to cover the bald bit... but it was passable, just about. More about the bald patch later on in this post and how I disguised it!
 
 
Shortly after this photo was taken I had another big shedding of hair, meaning I could no longer go out without my wig on. However, I did still have a lot of hair left, so I continued using the cold cap for Chemo #5 and Chemo #6. During these two chemos, I lost a bit more of the hair I had round the sides and back, but the hair on the bald patch on top of my head actually started growing back again - another reason why I wanted to continue with the cold cap.

This was the top of my head at the point of Chemo #6.

Hair had been growing since I finished FEC.

Then this was the top of my head about 6 weeks after my last chemo.


And this is my hair at 3 months post chemo. I've not yet had a real haircut - I just chopped what was left of the long bits off myself.
 

My friends keep telling me to go to the hairdresser and get a pixie cut, and I do have enough hair for that now but I'm not going to, for two reasons. 1. I hate it, I hate me with short hair, and I hate the shape of my head and face. And 2. I have loads of greys and I am trying to be good now and not dye my hair til 6 months post chemo.

Oh and just for information, this is a picture of me in my wig last weekend. I have just had one wig the whole time - I got one as close to my normal hair as possible, and once I got used to wearing it, it's been fine.



 
So anyway, that's a quick summary of what happened to my hair from day 1 of chemo up til now, nearly 4 months on. What follows is a bunch of stuff I learned along the way (including how to cover a bald patch!)


"It's only hair" and other pointless things people say

If you're diagnosed with cancer and told you will need to have chemotherapy such as FEC-T, these are some of the facts of your situation:
  • You will need to do whatever it takes to get rid of the cancer.
  • You're very likely to temporarily lose your hair as a result of chemotherapy.
  • In the grand scheme of things, keeping your hair is not nearly as important as getting rid of the cancer.
However, unless you are in the tiny minority of young women who are genuinely happy to have a bald head anyway, then losing your hair is going to affect you mentally and emotionally - at least for a while. If you're used to having anything other than a shaved head, then losing your hair is going to be shit. Everyone knows this. But the nice, well intentioned people you know won't be able to stop themselves from coming out with all sorts of unhelpful platitudes about it.
  • It's only hair!
  • It'll grow back!
  • You'll rock the skinhead look!
  • You can have loads of fun with different wigs and hairstyles!
  • How exciting! Now you could go blonde!
  • Think of all the time you'll save not having to wash your hair!
You're not an idiot. Hair loss is your new reality and you know it. But that doesn't mean you're obliged to be HAPPY about it! It doesn't mean you will feel calm about losing your hair. It doesn't mean you have suddenly become someone who is confident and self assured about their appearance, or because you're facing the ultimate Big Deal that is cancer that you no longer care about silly, trivial things like what other people think about the way you look. No! You're likely to be upset, worried, anxious, pissed off. And justifiably so.

The reason I'm bringing this up is just to say that if you're losing your hair because of chemo, and you're upset about it, and you want to punch the next person who tells you it's only hair and it's a small price to pay for getting rid of cancer, you're not alone. It's the normal, natural response!

(To anyone reading this who is not having chemo themselves but knows someone who is and is wondering what the right thing to do or say is.... Unless you're about to shave your own hair and eyebrows and remove all eyelashes in solidarity then avoid all of the above platitudes. Simple statements like "This is awful, I'm bringing a bottle of wine round" are likely to be much more helpful.)

Will you definitely lose your hair?

There are lots of different chemo drugs - some cause hair loss, some don't. My experience is with FEC-T which is a common chemo treatment for young women with breast cancer so that's what I'm writing about in this post.

FEC causes hair loss and there's no avoiding it. If you don't use the cold cap, you will lose your hair. Some people find that a very small amount of their hair remains, but this will be maybe 5%, in patches. Many (most?) women decide to shave their heads and be done with it, and feel a great sense of control and relief having done so.

If you use the cold cap then there is a possibility that you will keep a lot of your hair - but it will still thin out. My oncologist told me that if using the cold cap, you have a 50% chance of keeping 50% of your hair. I know some women who have been more successful than this, and have only had minor, and completely unnoticeable thinning. I also know women who have used the cold cap and their hair has all fallen out anyway after their first chemo. I'm somewhere in between the two extremes. The thing is, if using the cold cap, you have to be prepared to just wait and see what happens - it might work, it might not. Hope for the best, prepare for the worst!

When does hair loss happen?

I hadn't really thought about it before starting chemo myself, but unless or until you shave your head, chemo hair loss is a process which takes place over a period of time, not a single event. You don't wake up one morning to find you are suddenly bald.

If you have FEC chemo, and do not use the cold cap, you can almost guarantee to have lost the majority of your hair by the time of your second dose. It happens to people at different times, but it's quite common for the significant shedding to kick in at around day 13-14 after your first blast. This is the point at which many women shave their heads - partly because they are sick of eating their own hair, and partly because your scalp gets very sore - shaving the hair off gives relief to that.

If you have FEC chemo and do use the cold cap, this hair loss still might happen. I know someone who used the cold cap, and during the third week after the initial chemo blast, her hair started coming out in chunks. She was devastated at first - like me she was desperate to keep her hair. But the decision was taken out of her hands, she shaved her head, and the hair loss anxiety was instantly gone. I'm mentioning this because the reality for most people is that the anxiety of losing hair before it happens is far, far worse than dealing with a bald head once you've got one.

My own experience was different. As mentioned above, I didn't have any hair loss until day 13-14 after my initial dose of FEC. I was about to go to bed that night, tucked my hair behind my ear - and a little chunk came out. Argh! This was it! I was sure of it. The moment I had been dreading. I instantly started pulling, and on both sides, the hair in front of/right next to my ears was coming out easily. I would take some between my fingers, and it would just come out. I spent the next couple of hours obsessively pulling my hair - I pulled out loads from next to my ears but the rest of the hair on my head was staying firmly put. I started to have some hope - maybe the cold cap had worked but it had just missed the bits by my ears. Maybe the rest of my hair would be ok! I was given further hope still by the realisation that the hair-by-my-ears hair loss was accompanied by an instantaneous full Brazilian. The hair that was firmly in place on my head was in the clear, wasn't it? Was it? Wasn't it?

Over the next few days, my hair played mind games with me. One day I started losing hair at the top of my head - my parting was widening. Then nothing happened for a day or so. Then the hair by my neck started to give up and fall out. I was constantly stressed, and constantly being told off by my friends for tugging at my hair. But it never got so bad that I shaved my head. I could still cover over any thin patches by tying my hair back. So when I went for my second chemo, I used the cold cap again. 13-14 days after that blast, I was expecting another mass shedding of hair - but it never came. It turns out this is normal, and a really important point:

When cold capping on FEC, the worst hair loss will be 2-3 weeks after your first dose. After that, you will likely have a continued, gradual thinning of hair. But the worst hair loss happens during the third week after your initial chemo. So if you are cold capping on FEC, and lose a lot of hair during this week, but not enough to feel you are ready to shave your head - then I'd say stick it out if you can! I am so glad I did.


When does hair start growing back?

A lot of women, especially those cold capping, find their hair starts growing back when they move off FEC and on to Tax. That's what happened with mine.

What is using the cold cap really like?

I personally tend to refer to it as The Head Freezer rather than Cold Cap. Head Freezer is a more accurate description of the experience! Here is another horrendous photo - this time it's me wearing the cold cap. This was on my last chemo!



There is a rubber hat that covers the whole of your hair, and is attached to a big machine by a pink tube that you can see on the left hand side of the photo. This rubber hat is pumped with cold, icy water, -4 degrees in temperature. Then the black cap thing is pulled over it, and strapped tight under your chin, giving you hamster face. It has to be tight though to work. If the rubber cold cap isn't tight to your scalp, it won't do its job. (The white bits are just some gauze that are there to protect the skin at the edge of my hairline from the cold cap.)

You wear it for different amounts of time, depending on the chemo you are having. On the dose of FEC I had, I had to wear it for 30 minutes before they started administering the drugs, during the administration of drugs (about 45 minutes), and for two hours afterwards. Tax, thankfully, is less! 30 minutes before, about an hour while the drugs are going in, and 45 minutes afterwards.

It's freezing cold. The first ten minutes or so are the worst. Each time, I didn't expect to get through those first ten minutes. But that initial pain does ease off. In fact, the first time, I found it easy after that and was asking them if I could have it colder! The second and third times were much harder, and by the end I was feeling sick with pain, and desperate to get the thing off my head. Both times I think I gave up about ten minutes before the end. Fourth time onwards I took the advice of other YBCN (Younger Breast Cancer Network UK) members and dosed up on ibuprofen and paracetemol before putting the freezer on. I think the combination of that, and the shorter amount of time I needed to keep it on really helped. It was ok.

Anyway, using the cold cap isn't a pleasant experience. But because of the amount of my hair it saved, I kept going with it, and I'm glad I did. It's been worth a few hours of misery every few weeks (hours where, lets face it, I'm miserable as hell anyway because I'm in a chemo suite at the hospital).

Practicalities of using the cold cap, and looking after your hair

Some practical things to be aware of if you're going to be cold capping...

You will need to take these things to the hospital with you: conditioner, a hairbrush/comb, a small spray bottle which can be filled with water and used to spray your hair to wet it. Choose a conditioner that isn't your favourite. Trust me - after a few sessions that conditioner will be firmly associated with chemo and the cold cap and you'll never want to smell it again. (The smell of my old conditioner now makes me feel sick.)

Before putting the cold cap on, the nurse will spray your hair with water to wet it, then put conditioner all over it. This is because the cold cap is rubber - when it comes to taking it off at the end, it comes off much more easily if you've got conditioner on your hair. (You don't want to freeze your head for hours only to have the rubber cold cap rip your hair out anyway!)

When cold capping throughout chemo you have to be extremely, extremely kind to your scalp. This means:
  • Only washing your hair once a week at most, in luke warm water.
  • No hairdryer, no straighteners.
  • No products other than a very, very gentle shampoo.
As you'll leave the hospital with a head covered in conditioner, the first thing you need to do when you get home is wash your hair. This should then be the last time you wash it for another week.

This horrified me! My hair was used to being washed, dried, and straightened every day! I was gutted - what's the point of keeping hair if it's greasy and you can't do anything with it?! Anyway, the first few washes were about 4-5 days apart rather than a week, but after then I did as I was told. And my hair quickly got used to not being washed. It would be ok for about 5 days before it started to look even the tiniest bit rank.

Looking after your scalp is really important. It's about giving your follicles every chance to recover from any chemo damage. It doesn't appear to be all or nothing, either the follicle is blasted by chemo or it isn't. There might be follicles that have had a hammering from chemo, but with care, can recover. So be as kind and gentle to your scalp as you can.

Shampoo

General advice is to use a gentle, unperfumed shampoo. But so many women in YBCN swear by the Lush shampoo bar called New which is supposed to encourage new hair growth. It's pink, and smells of cinnamon. It only costs a few quid and will last months and months and months. I used it for my once-weekly hair wash and I'm still using it now. Hair is growing!

Covering up bald patches - the magic that is Toppik

As you now know, I had a humungous bald patch on top of my head. I took photos of it at various stages to share with other YBCN members and compare notes. I was never, ever intending to share any of those photos on this blog initially but now I don't care. I want to show how even the most enormous bald patch can be dealt with! If it helps anyone else who is facing chemo hair loss, then I figured it's worth my own embarrassment.

They aren't actually great photos - they were just taken quickly for a discussion in the YBCN group, but you should still get the idea.

Here is the monstrosity that was the top of my head at some point during the 4th chemo cycle.


Fucking chemo! Fucking, bollocking, bastard cancer and bastard fucking chemo! Fuck!

But anyway! Turns out it wasn't the end of the world. I found out about a product called Toppik. I guess it was originally developed for men who are starting to bald and can't cope with it! But it works a treat for us chemo girls too!
 
Toppik is "hair building fibres". Translation: powder in a pot that you sprinkle on your head to hide a bald patch. I have it in dark brown. This is what the pot looks like and you can order online.



Take the lid off and you will see that there is a top designed for sprinkling, kind of like herbs.


And the powder itself looks like this:
 

Doesn't look particularly impressive! But when you sprinkle it on your bald patch, this is what happens (allow for me not making an effort to take a "good" photo or actually brush my hair and make it look neat):


And once my hair was tied back, this is how the top of my head looked:

So, you see? Even a bald patch the size of Wales can be hidden quite effectively! So the cold cap doesn't need to be 100% successful to be worthwhile (in my opinion).


One final thing...

One final thing - if you are going to have chemo and are stressed about hair loss and have any questions that haven't been answered here, you are very welcome to contact me either via this blog, or via Twitter @mulheron81. I know how stressful it is! And if you are under 45 years old with a breast cancer diagnosis and living in the UK, then I recommend you join the YBCN group on Facebook. The support is amazing - it'll get you through this! You can find the public page here. Send them a message and you'll get instructions about how to be added to and find the secret, private support group.

7 comments:

  1. Thank you for all of your great tips. I am beginning treatment today. Fingers crossed. Placing an order for Toppik today.😊

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  2. Thank you for your sharing experience.

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  3. What a fantastic post, thank you! I've had my first cyle of FEC and also started with fairly significant hair loss at day 13. I'm using the cold cap, but as I have short hair am pondering the shave option shortly if my hair gets much thinner or patchy. Your post made me think i'll hold on a little and see what happens. I would say to anyone on FEC, if you think you will wear one, get a wig sort early. I can't get in for a week and am now anxious that it will be to late! I do have nice soft turban style hat handy for the interim though..... Anything to help keep a little control feels good! Thanks again.

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  4. What a fantastic post, thank you! I've had my first cyle of FEC and also started with fairly significant hair loss at day 13. I'm using the cold cap, but as I have short hair am pondering the shave option shortly if my hair gets much thinner or patchy. Your post made me think i'll hold on a little and see what happens. I would say to anyone on FEC, if you think you will wear one, get a wig sort early. I can't get in for a week and am now anxious that it will be to late! I do have nice soft turban style hat handy for the interim though..... Anything to help keep a little control feels good! Thanks again.

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    1. Good luck! I hope the cancer treatment goes well. It's shiiiiiiiiiit but doable. I had my hair cut last week and now have a short bob. I hated it at the time but still glad I stuck with cold capping even though I needed the wig.
      xxx

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  5. I don't know what to say ....I am new to this party line let's say... I have been through many difficulties through my life but this is the first tine I don't know what to feel and what to say.I am going to cut my hair tonight. Tpomorrow is my second chemo and trust me I do pray all goes well since it is going to take place in Greece.

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    1. Wishing you lots and lots of luck. On Dec 3rd this year was my 2 year anniversary of finishing chemo. Still doing fine :-) And my hair is now a proper bob, thick and healthy , all good.
      It is horrible to go through but you can do it. Xxx

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