My mum was diagnosed with Acute myeloid leukaemia (AML) in November last year and as she was considered too frail for high-intensity chemo she has been treated with venetoclax and azacytidine since then. Up until June this was on a 4-week schedule, since then it’s been 5 weeks. Her blood count has been consistently low since April and not really recovered in between treatment rounds, and in the last two weeks she’s needed three platelet transfusions due to dangerously low counts. She was due to start a new 7-day treatment round on Monday but this has now been paused due to her blood results.
I don’t know what this means for her illness and treatment going forward, if it is likely that treatment can resume again if her platelet and white blood cells improve, or if this is now ‘it’. I know everyone’s situation is different but was wondering if anyone has experienced something similar? I am in the UK but she is not so it’s not always easy for me to speak to her clinical team directly. I’m feeling very helpless and worried right now.
I am so sorry to hear about your mum’s diagnosis and the situation with her blood counts and subsequent stoppage of her treatment for the moment.
I have no experience around this so can’t offer any information but wanted to say hi send good wishes to you both . I hope you get some help from the lovely and wise people on here, they are always so helpful to me and am sure someone will have advice to offer.
Please take care of yourself as well as your lovely mum , this is such a lot to deal with. Be so very kind to yourself
its so very understandable that you’re worried … I send my love and thoughts to you and your mum … .please if you feel able share how the situation unfolds as when I read this I felt your situation could be something my family might be facing. My usually fit elderley mum was diagnosed with Acute myeloid leukaemia (Acute myeloid leukaemia (AML)) 2weeks ago and is 3 weeks into a her initial hospital stay and what you describe here is something on my mind as she is requiring a lot of blood and platelets and hasn’t started any treatment despite it being mentioned a week ago.The two treatment drugs you mentioned in your post were mentioned as the plan for her treatment a week ago. She had a 2nd bone marrow biopsy a few days ago to clarify the course of treatment. She has an intermittent temperature and although hasn’t had any infection identified yet I don’t imagine it’s probably a good time to start treatment but I haven’t been able to discuss any of my worries or questions with the specialist nurse or a dr. My thoughts are with you both x
Thank you! I needed to just write down my worries I think, the helplessness and waiting around for blood test results is so stressful. I know noone can tell me anything with certainty right now, it’s just one day and one test at a time. So hard, and I hate that I can’t be there for her all the time.
My mum was in hospital for 3.5 weeks I think when initially diagnosed, and she received lots of blood, platelets and intravenous antibiotics during that time. They did her first treatment towards the end of her stay but it was then quite a long time before her next round (6-7 weeks, can’t remember exactly) because blood counts. She was then on 4-week schedule from Jan-June. The good thing I will say is that she’s done fairly well on that, very tired but otherwise no major side effects (she got anti nausea medication that helped a lot).
I am so sorry about your mum too, it is such a hard thing to deal with. I will say that the first few weeks are horrendous in terms of dealing with the shock, trying to understand test results and treatment options, and accepting that a lot will be ‘watch and wait’. You are probably exhausted so try to lean on others if you can. I was in total problem-solving mode for about two months after her diagnosis where I stayed with her and helped with whatever she needed. When I went back home to the uk again I just fell apart. So try to look after yourself as well, though I know it’s hard to do
Thankyou your replies are a great help you sharing your experience helps me feel less isolated whilst supporting my mum. I will lean into the support I have we have a small but lovely family and I’ve some wonderful friends . Thankyou so much for sharing x