Hair Loss Help

I’m an now on day 13 after my first chemo treatment. I’ve found that i was laid out on the sofa for the first 7 days - just no energy,felt really unwell and very sick. I’ve now started to turn the corner and feel better - in readiness for them to him me with my second lot Thursday week!

I used the cold cap and wondered if anyone could let me know of their experiences with this please? I’ve almost now lost all my hair “downstairs” - but my hair on my head is all still intact - in fact since i’ve had it cut shorter ( so as to be a bit less traumatic if and when the cold cap fails) i’ve actually lost less hair than I normally would when i washed it every day before I started treatment. I only have the odd strand coming out at the moment. I just wondered, when does the hair on your head normally start to fall out? Am I on borrowed time with it? Or as i’ve only had the odd stray hair come out could it mean the cold cap may be working for me?

Sorry for loads of questions but the head hair thing, I find really scary - despite having a wig at the ready - I wake up each morning and check my head!!!

lots of love
Loopy xxxx

Hello Loopy, I am on day 6 of my second Epiribicin cycle. I have not used the cold cap (wasn’t offered or even mentioned!)and I noticed hair coming out on day 14 of first cycle. I was going for my wig fitting and the lady in the shop cut my hair short for me. The next day I took a pair of scissors and cut it as close to my head as I could. Over the next few days I noticed hair coming out when I pulled at it and a couple of days ago there was a mass of hair in the bath. I got a friend to shave my head for me! I feel so much better now that I don’t have hair coming out in the bath and don’t have to keep on “hair watch” on the floor, furniture etc.

However, I have found the whole hair loss issue quite distressing, it is the one very visual and constant reminder that I am having chemotherapy. But, I know it will grow back…

Good luck and best wishes, hope you keep your hair. Sheila xx

Hi Sheila,

Thank you so much for replying. The hair thing is truly scary isn’t it. My hair still seems to be fairly intact on my head - i’m hoping the cold cap may be working - but I have a wig at the ready if not. I just think that when you lose your hair, you really do look like a flippin cancer patient - which is what I find the hardest - I don’t want to look like that!!! I found a tie bandana in Wigs 4 you (it’s in the sale at the moment £25) which has hair attached at the back. I thought i’d give it a go and ordered one. It arrived this morning and I have to say it looks fab - I think I will probably get more use out of it than my main wig (which I only intend to wear if I step outside the house!). This bandana thing looks fab and you can pick the colour nearest to yours too. I think I will probably wear that around the house and even if I just pop to the village shops - at least I look some way normal in it!! It’s well worth having a look.

I’m off for my second cycle next week - am having a portacath put in sometime in the next week or so too as my veins are awful and i had a bad first time with them. I found I was poorly for about the first 5 to 7 days and then I started to feel more “normal” (well as normal as we can feel anyway!).

How have you found your second dose of treatment? Do you feel pretty much the same as you did after the first one? It was the tiredness I found awful and the fact that if I went to the shops I always felt like I was going to pass out. water seems to help me and I don’t go anywhere without a small bottle in my hand now. I seem to be putting on weight though - which I hate as I have spent the last two years losing 5 stone and now it’s going back on. I used to run 3 miles a day, ever day, before all of this and now I can’t do it. My consultant has told me only to walk and do gentle stretching exercises - so now all my muscle tone has gone to mush and my thighs are filling my trousers now!!!

Take care and thank you so much for sharing how you’re feeling with me. It’s such a great help. Louisa xx

Hi Loopy, I completely agree with you about looking like a cancer victim. It is not the look we want is it! I think I can not bear the thought of people feeling sorry for me. Also, shamefully, I acknowledge the kind of feelings that the “chemo look” in others brought to me. I didn’t understand the causes at all really.

I am keeping a diary of my treatment and so far, the pattern is repeating itself quite closely. I was lucky not to have any nausaea at all and feel I can cope with the rest. I too have had a few years of keeping fit and losing weight and generally feeling quite smug about my improved look and lifetsyle. Ha! Pride goes before a fall… I do believe that the recently improved diet and fitness is standing me in good stead throughout this process. I am just sticking to long walks now. It is enough anyway!

I am quite happy with my wig and have worn it out quite a bit now. Some children I know did not even bat an eyelid at the sight of it, so I feel quite confident now. I will have a lok at the bandana with hair, although at 53 it may not be the look for me! Have a lovely day, Sheila xx

Hi Louisa
I also used the cold cap while on Epi. I was on a trial that meant I had Epi evey 2 weeks rather than 3 (diadnosed May 2007). My hair started to ‘thin’ out on about day 19 after the first treatment. But I did not lose all my hair and didn’t need to wear my wig. My hair did thin, but I think I only saw this and to everyone else just looked normal. I was also advised only to wash my hair maximum twice a week and sleep on a satin/silk pillow.
I hope the cold cap works as well for you.

Best wishes.

Carol

Hi Loopy

I’ve had three lots of chemo now, the first time I was not offered the cold cap and consequently lost all my hair, the second time I was offered it and I went for it. I was so glad that I did I kept all my hair, it may have thinned a bit but not noticeable at all. I am so glad that I used it, although it is pretty uncomfortabe to start with you do get used to it don’t you! Hopefully you will keep your hair as I did and that in itself makes you feel a lot better. Wishing you all the best with your treatment and hope it doesn’t make you feel to crappy.

Take care
DebsHx