Hello all,
I would like to share my experience of dealing with treatment for Acute promyelocytic leukaemia (APL) as there’s not much out there about it. I guess not many people get this type of leukaemia. Happy to hear other people’s stories too.
I’ve been diagnosed with Acute promyelocytic leukaemia (APL) on Valentine’s Day this year. It happened while me and my partner were in the middle of IVF treatment and two days before I was supposed to give my sample to the clinic.
I had a high count of white blood cell (over 13k), low platelets and neutrophils when admitted. My symptoms were nose bleeds, bleeding gums, cough, bruising, fatigue. I was given ATRA in a&e straight away and transported to a cancer clinic the same day.
Next morning I was told I have Acute promyelocytic leukaemia (APL) and started my induction cycle the next day. It was idarubucin with atra. Idarubicin was given to me in four doses over seven days. Side effects followed week after my last dose. I had chest pains, stomach pains, diahorrea, mouth ulcers, lesions on my lips and private parts, mucositis, blood clot, liquid around my lungs area, many more I can’t remember now. Also side effects from morphine which I had a lot. I was very short with nurses and family. I was super emotional and sleep deprived. One night I had sleeping pills and they reacted with morphine which ended up with me sleep walking and having a panic attack. It was brutal. All this lasted for about two weeks and everything slowly came back to normal. Some lesions healed after a month or two.
Because of my age and preservation of fertility my doctors swapped idarubicin for arsenic and my first induction treatment started two weeks later. I had a bone marrow biopsy week and it came back clear (no cancerous cells) but still waiting on MRD results.
I’m currently finishing my first cycle of arsenic with atra and so far no side effects. Feeling lucky but aware that anything can change and Acute promyelocytic leukaemia (APL) could even relapse. Taking it day by day.
Kuba