APL experience

Hi people new to this was diagnosed with Acute promyelocytic leukaemia (APL) in June this year spent 6weeks away from my family in hospital I am on ATRA andATO therapy and in my 3rd cycle of consolation I am 43 next week just wanted to find out if anyone on hear has felt with Acute promyelocytic leukaemia (APL) witch is a sub type of Acute myeloid leukaemia (AML) as it’s rare would love to hear other peoples stories about treatment side effects and experiences many thanks

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Hi @Dannyboy and I am so glad that you have found us.
A great big welcome to our forum and as you say Acute promyelocytic leukaemia (APL) is one of the rarer leukaemia’s.
I have found one of the joys of our forum is that often it does not matter what our diagnosis is some of us share the same fears, questions, thoughts, feelings and practicalities.
Also you mention having spent 6 weeks in hospital away from family, it can be tough.
I hope someone can help with their experiences.
Please do keep posting and letting us know how you are and how you are getting on.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
I look forward to hearing more about you and have a very happy birthday next week, I expect it will be one you will not forget.
Be kind to yourself and celebrate and keep posting

Dear @Dannyboy
Thank you for posting and welcome to the Forum. Before I joined Blood Cancer UK I looked after patients who were diagnosed with Acute promyelocytic leukaemia (APL) and I am very pleased to hear that you are now on your 3rd Consolidation. May I ask how you are feeling on the treatment? Do you have good support through the hospital you are being treated at? Do you have a Clinical Nurse Specialist that you can talk to around your treatment?
If you do need to chat things through do please get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Take care


Hi I live in a very rural area of mid wales and the hospital is a hour away the consultants are great and the nurses in the chemo suit are great but I very rarely see or hear from the hemotology cns s nurses the treatment it’s self is not to bad the main issue for me are side effects neuropathy in my feet is really bad and pain in my hips just hoping I come out of this better it has been tough the last 6months


Hello again @Dannyboy
I am sure that after your treatment that you will feel so much better and stronger. It certainly takes its toll but it sounds like you are coping well. I would still encourage to speak to your Clinical Nurse Specialist about your neuropathy and hip pain, they could arrange for you to be reviewed next time you are in the Chemo Suite?
Take care and do call if you need,

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