hello - this is my first post and apologies if this has been discussed before. My mum - 76 years old - has recently been diagnosed with Polycythaemia Vera and started Hydroxycarbamide treatment. My dad has noticed her hair is visibly thinning - which I know is a side effect - but I wondered if anyone had any good recommendations for products that have helped?
2 Likes
Hi @MAXFRITH welcome to our forum and posting.
I am 74 yrs old and have another blood cancer, but have not had any treatment.
My hair has always been fine, it has thinned a lot since my diagnosis 20 yrs ago, my age doesn’t help and I have now been diagnosed with heart problems and my hair has thinned even more.
No products have helped me.
Perhaps you mum might want to talk to he specialist nurse.
It sounds as if you are so caring of your parents.
Don’t forget carers are the unsung heroes and you need to look after yourself as well as you do your parents.
Please do keep posting as I look forward to hearing more about you.
1 Like
Hello there @MAXFRITH, welcome to the forum. I’m so sorry to read of your mum’s diagnosis and thinning hair, but it’s lovely that you’re here trying to find advice.
Last year I was diagnosed with Polycythaemia vera (PV) and like your mum take hydroxyurea. I didn’t hear about its potential affects on hair until months into taking it, but I was bald and perhaps my haematologist didn’t think to mention it (he was terrible for other reasons and I’ve since changed haematologists).
Your mum is not alone in developing thinning hair as you already know, but I’ve never heard of any products that might benefit maintaining what hair is already present. Others on the forum whose hair has thinned have been able to change from hydroxyurea to other cytoreductive medicines and mentioned their hair thickness improving after.
Blood Cancer UK has this information about hair loss: Hair loss and blood cancer | Blood Cancer UK Might be worth searching the forum for threads mentioning Myeloproliferative neoplasms (MPN), Polycythaemia vera (PV) and/or hair loss.
Sorry not to offer more useful information but do keep looking around the forum. Others who’ve experienced hair loss from Myeloproliferative neoplasms (MPN) treatments may be able to offer more definitive ideas.
Do keep posting @MAXFRITH and keep us posted about anything your mum finds helpful.
1 Like
MAXFIRTH no advice just to say my hair thinned while on Hydroxycarbamide but started to thicken when I came off it. Maybe she could ask her nurse or even a hairdresser for advice. Best wishes Liz59
2 Likes
Hi @MAXFRITH
Thanks for posting and welcome to our forum.
I’m sorry to hear about your Mum’s hair thinning - it can be an emotional part of treatment for the person and everyone around them. @Duncan has shared a good link with you for information and advice and as Erica said, talking to your Mum’s CNS could be a good idea.
I’ve also found this previous thread that discusses the subject: Hair/nails - General chat - Blood Cancer UK Online Community Forum There’s no product recommendations but there is support there and hopefully some reassurance.
You can search for other posts using the search bar at the top of the page or using the tags.
Take good care of yourself,
Best wishes,
Ali
3 Likes
Hi,
I’ve actually been seen by a trichologist, specialist in hair health through my local Macmillan centre. I’m 35, just coming out of post partum and now taking a TKI for Chronic myeloid leukaemia so different situation, but primarily preventing hair thinning, but I’m sure a trichologist would be able to offer support. Take care
4 Likes
Thank you all so much for your kind words and advice - it’s much appreciated
3 Likes