Chemo - hair loss and other tips

Hello :)

I'm new to this, so I shall share my story and would love to hear other people's experiences. 

I'm a 29 year old lady and I have, after several months of uncertainty and an original diagnosis of CUP (cancer of unknown primary), been dignosed with a yolk sac tumour which is a type of germ cell tumour. They think it started in my ovary (no trace of this on scans but apparently almost all yolk sac tumours begin in the ovaries or testes) and spread to a lymph node at the back of my abdomen. I had an operation a month ago to remove it and am now about to start the process of egg harvesting before starting chemo in a couple of weeks' time. I will be on the BEP regime (bleomycin, etoposide, cisplatin) if anyone has had any of these drugs before and would like to share their experiences.

Today I bought a wig in preparation for my hair loss and it was actually quite a difficult, emotional experience. I'd describe myself as a low maintenance girl anyway, but the thought of losing my hair and having to wear a wig is pretty hard. The wig, no matter how nice, just isn't quite like my normal hair (and makes me feel like it could be spotted a mile off!) My hair is below my shoulders and it feels like the majority of wigs out there are for older ladies who often have shorter hair. It's also quite fine, and having a heavier wig with more hair doesn't look or feel quite right. I'm sure I'll get used to it but wondered if anyone has any wig tips? 

My other question is what do people do physically to prepare for hair loss? Do you cut your hair shorter in the run-up then shave it off when it starts falling out?

Any other chemo tips? (Obviously hair loss is just the tip of the iceberg!) Thankyou in advance xx

  • Hi and welcome to the forum! I'm sure other women will be along to share their tips.

    Before I started chemo I did a pre-emptive strike and had a crew cut. My thinking was that at least that way I had some control and from a practical point of view the shower drain was less likely to be clogged with hair. 

    Good luck and I hope you get lots of replies.

    Dave

  • Hi there,

    My hair started to fall out in small clumps, like you my hair was thin and just below my shoulder. I thought about having it cut short but then thought it dosent really matter how long it is, its still going to be awful when it falls out.

    As more and more of it came out, I told my hubby to shave it off. It was the best thing I could have done, I popped my wig on and went out. No more getting upset and watching it get thiner day by day!!

    Your wig will sit better when you have no hair, although it does get a bit itchy in hot weather. 

    I have just had my third lot of chemo, I was so sick the first 2 times and just assumed this was normal, I spoke to my oncologist and they have changed my medication, the last lot of chemo was so much better, so do not suffer in silence speak to the team looking after you.

    I wish you luck 

  • hi

    I had my head shaved just after my first chemo session as I didn’t want to deal with my hair falling out and it was the best thing I did. I also had a hair system made from human hair as it was one of the things my young children wanted to be the same when they looked at me, and it’s exactly like my actual hair style, even the oncology nurses have had to ask if I’ve lost my hair.  It’s not for everyone but it works great for me. 

    Can you take it to a hairdressers and get it styled? 

    Let us know how you get on.

    WL

  • Hi, this was the one thing that worried me the most about chemo. It started coming out on the 3rd week after my first chemo. I wasn’t brave enough to shave it off, I only washed my hair every week and let it dry naturally. It was upsetting but I got it styled short before chemo. Mine was shoulder length and very fine. I started wearing my wig before it all came out to get used to it. I also bought sleep hats at night, so when wig came off, hat went on. This is how I coped. My first wig was styled in a style similar to my own but I also bought another one when my chemo finished, I went shorter and a bit blonder, I actually loved them, they get more comfy the more you wear them and it only takes a minute to do your hair in the morning. You only need to wash them every few weeks. My hair came back in very curly, never had curly hair before. I was actually nervous going out at first with my curly hair wishing I could put my wig back on. It’s been a year this month when I started chemo so it’s only around 9 months till your hair comes back in. I had my first hair cut last week but my curls are still strong lol. Stay strong as it will go in quickly,  I got up in morning and put a bit of makeup on regardless how I felt, put my wig on and I was ready to fight this battle. This was how I coped, I’m sure you will find your own way to cope. Best wishes x

  • Thankyou for all your replies. 9 months without hair sounds like a long time, and I’m just going to have to get used to the idea that it’ll be years before it reaches the length it is right now. So funny to think it might grow back looking completely different! I kind of feel exhausted thinking about the road ahead and just want to feel normal, but of course I know it’ll be worth it in the end (hopefully) and there’s more to me than the way I look, and probably more important side effects to worry about.

    Love the idea of just getting up and going for it every morning, I think a positive mindset must be so helpful. Hmm makeup - did you buy anything different or aim for things for sensitive skin or just use what you already were using?

  • hi

    I used the same makeup but bought myself some new face/body creams as a treat. And some rosehip oil for my face. I think when I’m done though I will probably have to change them again when I’m done as I associate the smell with treatment. 

    My eyebrows have also started to thin out a bit so maybe something to think about, but have kept my eyelashes so far, I got them tinted and lifted so I didn’t need to do anything with them if I couldn’t be bothered in a morning. 

     

    WL

  • Hi, I just used my usual makeup, I even bought false eyelashes but I didn’t need them, strangely enough it was the only body hair I didn’t lose. Think positive again, no shaving arms and legs. I did have to use dermal body wash and moisturiser as I kept coming out in rashes, and my skin was quite sensitive and had to keep out the sun. The nurses told me they had seen this before and said possibly it was the chemo working as the rashes were all over where my cancer was. Who knows? they were super in sorting out all my wee problems, every chemo session  seemed different but they help you get Through it. Take it week by week, wishing you all the best x