Hi, my mum who's 77 years old was diagnosed with AML in September 2020. She was started on chemotherapy straight away. A chemo pill every day and chemo injections for 7 days every 21 days. She was having regular blood transfusions up until November. She had Dec and most of January without needing transfusions. Then she went back to needing regular transfusions. A bone marrow was ordered and the results showed an empty bone marrow. The consultant decided to stop her chemo pill and reduce her injections to 5 days every 21 days. The doctor has now made a clinical decision to stop her chemo as its now not working. I've no idea how this is going to go. We have been told she will just receive blood transfusions as she needs them.
Hi and welcome to this corner of the. a community. I am Mike Thehighlander and so help out around our various blood cancer groups.
I so sorry to hear about your mum’s AML diagnosis, although I have a rare skin Non Hodgkin’s Lymphoma diagnosis way back in 1999 I do ‘get’ the challenges of an incurable blood cancer journey but at this time I am 5 years without treatment.
Although I have been back in hospital 5 times (30+ days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Sepsis x2, A Fib and three months of low blood counts caused by GvHD (To do with my Stem Cell Transplants) so regular blood transfusions every week...... it’s all hard going but I just keep pushing through.
At this point in time there are no other treatments if I relapse apart from Palliative but those thoughts are on a very high shelf for the time being.
Let’s see if any of the AML carers are still looking in to give you some support.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Carers only and supporting someone with incurable cancer groups as you will connect with others supporting family and friends through their cancer journey.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
((hugs))
