In remission with APL

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In may I was diagnosed with APL and now in August I’m in remission.

How I got here I don’t know, because I feel like it was just a whirlwind from noticing bruises, blood tests, then referred too hospital and admitted on same day;

I was kept on this ward for 5 weeks because the treatment of Arsenic Trioxide and Atra may cause severe side effects.

;Stupidly I learned from the internet that survival in the first month was 50/50; due to possibility of brain haemorrhage, cardiac arrest and clots on the lungs;

I was so scared that the treatment to cure my APL could kill me ;

every day I prayed for life and to see my new grandchildren being born, I wanted to live and would take whatever was thrown at me 

which included daily blood tests which I hated, a PICC line inserted and removed because of sepsis;  Nose bleeds; Rashes from Atra, newly Diabetic and Insulin dependent, blood products,platelets 

Echocardio grams, cat scans, and ECGs once a week 

i become very low and depressed crying myself to sleep nearly every night because i felt so alone:

The consultant visited me every morning and he reminded me how lucky I was compared to others who were less fortunate than me:

I knew from conversations with doctors and nurses that their are just 3 of us receiving this treatment in the hospital.  I wondered how many people didn’t make it through the 1st month;

eventually after 5 weeks i was allowed home and continued with Arsenic infusions twice a week at the hospital and the Atra as a daily tablet;

Now after the 2nd cycle and 3rd bone marrow biopsy I’m free of APL for now, but the treatment continues for the whole 9mths

Im home but I feel tired because I can’t sleep at night and I have to find different ways to get to sleep like alcohol, sleep tapes because dr won’t continue to give me sleeping pills:

sometimes I feel fake until I try to do things around the house and get worn out;

now I’m feeling quite low again, it comes and goes from day to day: My life has changed and I don’t know how I can get it back to where it was Confused

  • Hi  and welcome to this corner of the Community although I am always sorry to read about your diagnosis, I am Mike and I help out around our various Blood Cancer groups.

    I don’t have Acute Promyelocytic Leukaemia (APL) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.

    You have had such a challenging journey and let’s hope for the road to be much smoother from now in. At times, living the post treatment journey is like living in a parallel universe - you can see your old life but regardless what you do you can not get back on that same path. Following my many years of treatment and now 7+ years into my post treatment life, a situation I was unwillingly put into. It did actually make me review life and everything that we once thought important.

    So some things from our old life are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them.

    APL is on the rare side and is indeed a sub-type of acute myeloid leukaemia (AML)…… let’s look for any group member to pick up on your post and get back to you. You can also look in our general Leukaemia support group to see if anyone has posted in there.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provide cancer information, practical information, emotional support or just a listening ear.

    We also have our Ask an Expert section but do allow a few working days for a reply.

    For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

    You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups.

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I've just read your post and wanted to say that I really hope your treatment has continued to work and that you are now on the 3-monthly monitoring checks.  I was diagnosed with APL in late Dec 2020 (aged 64) and had the treatment regime that you describe and reached 2 years remission last October. I can now do so much more than I thought I'd be able to, although muscle aches seem to be a thing and I definitely tire more easily.  The early days 50/50 realisation was a bit of a moment, but I've learnt to say 'That was then...this is now'. best wishes.