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

    Welcome to the leukaemia forum although of course sorry you find yourself here. As you have said your leukaemia is quite rare so there haven't been any posts other than your in the last year but someone may come along who has had the same type as you or who is going through the same process now and wants to chat. Its great that you are in remission so well done for that. I was diagnosed with ALL in 2012 and went on top have a stem cell transplant so leukaemia but a different type with a different treatment plan.

    Keep well!!

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • i have been diagnosed with APL this week after bruising easily, being fatigued and out if breath. I am 31 years old so I am hoping that as i have no other conditions, I might respond well to treatments. I am receiving both the ATRA and the Arsenic medicines as from yesterday. I was wondering if you had any advice about the what i might experience as this is all so new to me. I am receiving alot of medical advice, but I would find it really helpful to speak to someone who has been through this aswell.

    Many thanks Slight smile

  • Hi, Til73. It's a shock to get a diagnosis like this, but don't lose heart: you can beat it! I was diagnosed this time last year after a routine blood test for PSA (I'm a 65 year old man) showed really weird results.  I started my ATRA and Arsenic Trioxide treatment on 4 Jan. A bone marrow test in Sep (two weeks after I finished my treatment course) showed no signs of the disease = in remission. Now they're going to check every 3 months for the next 2 years and I feel fine and am fully back to doing 65-year-old-man-stuff. Now the good news: you're half my age and no other conditions and, by the sound of it, like me your illness has been detected pretty early on.

    The treatment is hard work. I had some uncomfortable side-effects at times, but the tests every 8 weeks were a real encouragement. If you know the treatment's working, you can accept the downsides. I was in hospital for my first week of treatment, and if you are I hope that you're as comfortable as you can be. If you'd like to talk, let me know.

  • Hi, Paul - can I ask a quick question: is it OK to share a telephone number on this forum? You'll see from Til73's post below that they have just started treatment and if they want to talk, I'm happy to share a number.

  • Hi.. I wouldn't share the number in the public forum as it is open for anyone to see. If you would like to make contact with someone then you can of course send a private message. You can do this by clicking on the speech bubble which is on the top right hand block of options. Then type their online profiler name in top section, select them and the in box below send a message. if you have problems come back to me.

    Hope this helps.

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hi JackA, I am so glad that you are through the treatment and in remission. We are just at the beginning and I wondered if I could ask if you had any of the problems/symptoms that my husband has. My husband (who is 62)  was taken into hospital just before xmas after being really not well with flu like symptoms and nose bleeds. He had six weeks induction treatment with atra/arsenic and is now on round 2 as an outpatient but ended up back in hospital last week with infection. He had differentation after the first dose of atra/arsenic in hospital where they paused the treatment for a bit. Everytime he is on the atra/arsenic he gets really painful gout.  He has had three doses of this in the past eight weeks. I just wondered if you had any of theses symptoms.........thank you .  

  • Hi, Jean16. Firstly, my and my wife's heartfelt best wishes to you both: this is a tough time. 

    My side effects from time to time were: the arsenic always made me feel very sick and then the anti-sickness pills bunged me up; dry skin and eczema around the groin, which responded very well to medicated powder; funny blood flow (cold feet) and a racing heart/very red face; blurry vision (I've got rotten eyes anyway, but this was extra blurry periods that soon passed).  These symptoms stayed with me pretty much throughout the treatment programme, but would be much less or fade completely during the weeks off between the later cycles. I also had pretty severe brain fog in the first 16 weeks or so: I found that I could just about do a bit of simple online admin, but otherwise I was in bed reading or listening to the radio. Later on, I really justified outr Netflix subscription and I would go for short walks on nice days.

    I know we should never count our chickens etc, but do look forward to things getting better: I've been chainsawing a tree this morning.  I've clicked the requesting friendship button on your icon, which I think allows us to use the system for messaging, if you like.

  • Thanks Jack for replying so quickly. It has been a very bumpy ride for us so far but hearing what you have come through with all your side effects gives us hope. Some of your side effects sound pretty uncomfortable!!  The doctors do keep telling us the prognosis is good and the first bone marrow test came back to say james is in remission a few weeks ago. But since then he has been back in hospital with infection and also low hemoglobin which they said was just a blip and nothing to worry about..  I worry about everything!!! I'm working on that though lol. I have found it really hard to watch him suffer, which I'm sure your wife would have found difficult too. Its good to know that his gout will probably ease up on the 4 weeks off treatment. Its also good to know that you took it easy as a physio came to see james last week and was talking as if he should be able to do cardio exercise every day and longer walks, plus add in swimming. (I doubt he would have managed this before leukaemia).  He is quite tired and has managed walks of about 20 minutes on the nicer days. I hope things stay good for you both and you enjoyed chainsawing your tree!! I have accepted the friends request. Im not great on tec, so if i miss a message bear with me......thanks again Jack for replying. Its a comfort to know somebody else has come through the other side. Take care 

  • Hi, Jean - I thought I'd just check in to say that I hope your husband is getting on OK and that some of the side-effects have dropped off a bit in the weeks off. 

  • Hi JackA......I have just noticed this message today (told you I wasnt very good with tech)......Its good to hear from you. Thank you very much for thinking of him. We have just started cycle 3. He seems to be following the same pattern as you in that he has the side effects the 4 weeks on the Arsenic and they taper off in the 4 weeks off the Arsenic. Although, the pseudogout he has in his wrist is still niggling a bit. So, we did have four weeks where we managed to do a few normal things (although still restricted by covid as apart from not wanting to catch it we dont want it to interfere with the treatment cycles) . He has been pretty fatigued this week as last week he had the arsenic 5 days in a row. We saw the consultant at the start of this cycle who said they will do a bone marrow test at the end of this cycle and if that is negative they are going to cancel the 5th cycle and finish at 4 and then monitor every three months. How many cycles did you have and how are you doing now? I hope all is still well and you are still having fun with your chainsaw lol  ......thanks again