A month ago my 82 year old mother was referred by her GP to haematology. Consultant told her she had either Myelodysplastic syndrome ('MDS') or Acute myeloid leukaemia ('AML') but needed a bone marrow biopsy to confirm which.
Two weeks ago she was hospitalised with early stages of sepsis due to a chest infection but managed to shake it off. While there it was confirmed she had Acute myeloid leukaemia ('AML'). Due to her age she was offered Venetoclax and Azacitidine, and treatment started last Friday. Unfortunately her body could not tolerate the drugs and after four days treatment was halted. She aged ten years in 48 hours and is now fighting for her life in hospital due to the damage caused by the chemo drugs. We have been told if she doesn’t start to show signs of improvement she will likely pass in the next few weeks.
Does anyone else have this experience? I’m really struggling with how rapidly the situation is changing on a day by day basis. On Monday morning she was the mother I know, by Wednesday morning she was critically ill. Today, Friday, there has been little change. I’m terrified of what each new day will bring. I’m being strong for her but I know that whatever happens it will hit me hard soon. Any tips for dealing with this when it happens?
Hello there @Nikuman, welcome to the forum. I won’t beat about the bush—what your mum and you are going through sounds utterly horrendous. I’m so sorry it’s all happened, and so fast. I imagine it feels like a shock, so well done for reaching out.
I’ll share the great Blood Cancer UK information about Acute myeloid leukaemia ('AML') here for when you want to read more about your mum’s diagnosis.
May I suggest you give the specialist nurses a call as they can support you best right now, their free number is 0808 2080 888 and they’ll be there tomorrow (Saturday) from 10 am to 1 pm.
Please know that there are other forum members who will also understand what you’re experiencing and there is advice just waiting to be found, perhaps use the search box at the top to find them using ‘Acute myeloid leukaemia ('AML')’ and the Related Topics at the bottom.
Perhaps you would like to reach out to Maggie’s Cancer Support too, who offer all sorts of services at their centres which you may be located near: https://www.maggies.org
I am sure others will be along soon enough to offer their support, but please keep us posted about how you and your mum get on @Nikuman. Thinking of you at this difficult time.
Thank you for your responses. I appreciate people reading and sharing their advice.
Today we were told that it’s extremely unlikely that Mum will survive the next ten days. The toll on her body is just too much. As traumatic as hearing that was, I hesitate to use the phrase but perhaps it’s a blessing in disguise. The alternative would be a long, slow path, still with a prognosis of a couple of months. Her suffering will be limited, and her comfort is the only priority right now.
What you say makes total sense and it does sound traumatic, so please look after yourself during the days ahead @Nikuman. I happen to have experienced something akin to what you are now and would agree—you can be a great advocate for seeking as little suffering as possible for your mum’s sake. I’m sure you are already.
I’d say try not to feel bad in yourself when you need breaks for your own self-care. This can be as simple as 5 minutes alone, some fresh air, having a good scream into a pillow…
Do please consider calling the BCUK nurses I mentioned before, they can offer you specialist advice and point you towards other services that may be of use right now.
