Acute Promyelocytic Leukaemia

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Hi, I was diagnosed with APL at the end of December 2020 and after 10 months of treatment am currently in remission and feeling so much better than I was.  I'm 65, so, I think, quite a bit older than most people diagnosed with this rare form of leukaemia.  I was treated with Arsenic Trioxide and All-Trans Retinoic Acid.  Happy to talk if anyone out there is having the same and thinks it might help.

  • Hi, jean16 - I don't blame you for being slow with the tech and I'm SO glad your husband is doing well!  I certainly found the initial weeks of each cycle, with 5 doses of arsenic, quite hard - I was sick quite often.  But (like your husband, I expect) I was really lucky to be so well looked after at home. I had the programmed 5 cycles, although a bone marrow test after cycle 3 showed no trace of APL: my consultant said 'better safe than sorry'!  Your husband's fatigue sounds familiar, and mine got better a few weeks after the course finished.  My treatment finished last September and they tested 3 weeks later, so I was declared in remission in October.  I had my first monitoring biopsy in January and I've just had the 2nd - it's a bit of a stress waiting for the result, but they haven't called up in a rush! I reckon I feel fine, although I am definitely weaker than I was before the illness and busy physical work (which I enjoy) does cause some aches and pains.

    Anyway, great news that he's doing so well and long may it continue!

  • Hello , i hope that you finished your threatment for the APL, and i eanted to ask you for sharing some experience with me. 
    Also i hope you went through this with no or less uncomfortable side-effects, because after i saw what my son went through, i dont wish those moments to anyone. He had almost every side - efect that the doctors said it may be caused by the threatment.

    My son, 4 years old, was diagnosed two months ago. He finished the first phase of the treatment and doctors made co troling bone marrow. We were expecting to succeed remision with 0 cells but the result came 0,9. I dobt know what does this mean, is it good or is it bad? Is the therapy working or not? I am afraid that something is not done as it should be. Should i wait to see what will be the next result after we finish the first consolidation therapy, or should we ask for threatment in other hospital. With all respect, doctors here in North Macedonia are good, but as this type of leucemia is very rare i go crazy, and especially now when he is not in remision after the first phase. 

    Thank you

  • Hi Jack, I had the same as you, diagnosed extremely suddenly in April 2022, same treatment regimen, achieved complete molecular remission after induction cycle.  Thankfully there are no major complications so far, but, yes, I was a bit unwell after week 1 of each cycle with the 5 consecutive days and not being used to it after a 4 week break.  My first quarterly follow up tests thankfully came back ok, it does make you nervous thinking about it, but no point in worrying, if a relapse happens, it happens.  You just do whatever is needed.

  • Hi, Renaissance

    Glad to hear that you're in remission too and long may it last! You're right about the need for acceptance.

  • Hello all, I was diagnosed in February 2024 with Acute promyelocytic leukaemia. I’m 35 so relatively young I guess. I had a high risk APL so they treated me with idarubicin+atra first before moving on to arsenic trioxide+atra. Idarubicin gave me all the nasty side effects while I’m having none on arsenic. I’m currently finishing my first consolidation treatment, three more to go. I find bone marrow biopsy extremely painful. I feel very lucky in sense that I’m allowed to carry on as an outpatient and live my normal life. I’m aware that high risk APL is more likely to relapse than low risk so I’m little bit worried about that. Also, me and my partner have been undertaking IVF treatment and that’s been put on a back burner. I’m gonna try and find some answers regarding male fertility after treatment and hope it’s not too late. I’m happy to connect with others who have or had APL and share experiences!

  • Hi, Kuba. Working through all the cycles can seem like a long haul and I agree that the biopsies are unpleasant but stick at it.  I found that focussing on what I knew about my situation was a good way of reducing worry about what might happen and it's good that you are carrying on living your normal life. I was advised that there could be fertility effects of the Arsenic+atra treatment that I had, although at 64 (then) it was rather a moot point and I didn't have the concern about it that I would have had at your age. I see that there is some research openly available online but guess your situation may not be clear until you have completed your treatment - so I wish you the best of luck with it!