I was diagnosed with Acute promyelocytic leukaemia (APL) in September last year, I spent 5 weeks in hospital on Arsenic and Atra. I am due a bone marrow biopsy tomorrow and then start my 3rd round of treatment. Has anyone lost all of their hair on Atra and Arsenic. My hair is now very thin and I would like to know if I will lose it all. I have been given very little information.
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Hi @ally
Welcome to the forum, although I’m so sorry to read of your diagnosis that brings you here. I hope you find it a supportive place to share anything that comes up to you during your treatment.
You mention that you’ve not been given much information, so I just wanted to reply to share Blood Cancer UK’s information about Acute promyelocytic leukaemia (APL), which includes links through to more information about the treatment and side effects: Acute promyelocytic leukaemia (APL) | Blood Cancer UK We also have a booklet, which you can download for free, here: Acute promyelocytic leukaemia (APL) booklet | Blood Cancer UK Shop
As it says, different people will experience different side effects so it’s hard to know whether you’ll lose all your hair. I hope someone else will be able to share with you their experience, but remember it may be different for you.
It’s so very understandable to worry about this - it is such an emotional part of any treatment and can really affect how you feel in yourself. We do have some information on this, which may be helpful to prepare yourself either way: Hair loss | Blood Cancer UK There’s also this story by one of our ambassadors, who shares how it was for her although with a different diagnosis: Coping with hair loss when you have cancer | Blood Cancer UK
I hope this helps. Please do also write down any questions you have before you start treatment and ask your hospital team - they will know your case best, and will be able to talk through what to expect if there is anything that’s concerning you - especially if anything comes up after reading through any of this information.
Take good care of yourself,
Kind regards,
Ali
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Hi @ally a great big welcome to our forum and @Ali_BloodCancerUK has given you a brilliant response.
You have raised an issue many others will want to know and I hope others can help.
Don’t forget the emotional, phycological visual, practical etc effect on you, it is a big thing.
I look forward to hearing more about you and be very kind to yourself
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Hi there! I’m sorry that you’ve been diagnosed with Acute promyelocytic leukaemia (APL); I was in the same boat following diagnosis in August 2022! I unfortunately did lose my hair, but did so very early on after I had to also have idarubicin for some complications I was facing! It’s tough that you haven’t found any good information; it’s kind of a rare one, and everyone responds differently to the medication. I do know of people who didn’t lose their hair, those who thinned and those who kept it; sorry I can’t be more help on that front. Hope this helps sort of; if you have any other questions, feel free to reach out. There’s some good support groups, and the blood cancer UK booklets provided me with lots of useful answers so highly recommend checking those out!
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Hi @jess.mundy2018 a great big welcome to our forum and your realistic personal experiences are so useful.
How are you doing now and I look forward to hearing more about about you too?
Really look after and be kind to yourself.