Acute promyelocytic leukaemia (APL)

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

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Hi @kubastarzynski quite a lot seems to have happened to you since Feb 14th if I may say so.
You have such a lot on your plate with the emotional IVF journey you and your partner are on, before your diagnosis on top.
I found my diagnosis made me think of my mortality.
Yes, treatment can be brutal and it takes a toll on our bodies.
Please do feel free to share how it really is for you on our forum and the Blood Cancer UK support line is also there for you on 0808 2080 888.
Good philosophy, but sometimes easier said than done, is taking it a day at a time.
Please do look after yourselves and you might both deal with your emotional journey differently.
Please do keep posting how you both are.

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