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Hair thin and coming out still 200 days post transplant

Hi, since my transplant last January 2019 my hair just is barely growing in and if I touch it actually comes out? I have no eyebrows although to begin with they grew back lovely, then disappeared. I have skin gvhd and after much research have discovered that this is most likely the cause. Is very upsetting as Iv always had thick hair and never worried about losing it with chemo as just expected it to grow back! My skin isn’t too bad often itchy and dry but manageable just more upset about my hair. Has anyone had the same experience and did hair come back eventually? ( what I keep getting told!)
Lizzie

Comments

  • Hi Lizzie,

    Yours sounds very similar to my experience, and I too had skin GvHD which I think was the cause. When my hair came back at first it seemed darker and thicker, but then a few months post transplant I started to notice it was being lost again and going thinner. I also put it down the the GvHD which for me was quite bad, and was only conquered by almost two years of ECP treatment. Once the GvHD was under control and eventually cured my hair growth has been normal and I would say I probably have much the same appearance now as I did before my treatment began, in terms of colour and volume.

    What treatments are you having for your GvHD? I started on oral steroids and a variety of creams but they never really got on top of it, hence I was referred for ECP which did resolve it.

    I wish I'd taken shares out in e45 as the amount of that I got through was incredible. I did find the bath oil very soothing though when my skin was particularly itchy, and a good soak in a bath of that for a couple of hours gave some lasting relief. In fact I had a bath almost every night when my skin was really bad.

    I hope this helps, and i hope your hair returns to normal very soon.

    All the best,

    Steve

  • Hi Steve, thank you so much for your reply, I’m using steroid creams and Aveeno cream which helps a little, the itching and dry scaly skin was troublesome and worse at night ( itching) wish I’d tried e45 bath soak tho! It’s calmed down now on skin although still active, but it’s my hair as I explained in my first post is just unable to grow or is growing in but very fine on top of head but then dry and scaly at back and sides of head and lost eyebrows and some body hair.
    Trouble is my consultants have just not taken it seriously( hair gowth) and keep saying it will grow etc then tried to pacify me by saying I’m lucky to be well in all other aspects.
    However I am now going to be firm and request ecp as really want my hair back!! And my skin back to normal!
    Liz

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