Hi there, my beautiful mother had Myelodysplastic syndrome (MDS) (diagnosed April 2022) which transformed into Acute myeloid leukaemia (AML) by May 2022 given mother age now 77 years old and she has other comorbdities
the prognosis was poor. However, she has done well and responeded exceptionally well to azacitidine mom could only tolerate 5 day cycle and not the recommended 7 days. Mom stopped the added venetoclax in August 2022 again she could not tolerate it.
We were told last week that now the Azacitidine is no longer working her blasts cells are now 59.6% and there is no other treatment available, mom is transfusion dependant of weekly platelets and alternative week she will receive Red cell transfusion
I have this news difficult, Acute myeloid leukaemia (AML) become an illness we live with and I almost had forgotten its a terminal diagnosis.
The hospital is amazing cant fault them, but i cant give up on mom may be im in denial but i want to fight this.
If im being realistic mom is becoming weaker i can see this supose im scared of the unknown, dont want to face whats going to happen.
Has anyone got any experience any advice any suggesstions, alternative therapies. Feel like im giving up on her if i accept this diagnosis.
Dear @Clare28,
Welcome to our forum, I am so glad you found us, however I am so very sorry for the circumstances that have brought you here. I can only imagine the emotions you feel at the moment, please do be kind to yourself.
It sounds like your Mum has managed well on azacitadine for some time but I am sorry to read it is no longer keeping the Acute myeloid leukaemia (AML) at bay.
Have you plenty of support around you?
Does you Mum have a clinical nurse specialist (CNS) you could talk to about how you are feeling?
We would be more than happy to support you, please do know you can call us and we can talk through things. Our number is 0808 208 0888.
You will get some amazing support from the community here.
Take care of you too.
Best Wishes, Heidi J (Support Services Nurse)
Hi @Clare28 I am so sorry to hear about your mother and the situation you are now in.
However I am so glad that you have found us.
You seem to have a very clear insight into yourself which is a great start.
What you haven’t told us is what your mother thinks, feels and wants, and that might be a very difficult conversation to be had.
I hope others can share their experiences.
You say the hospital is amazing, so perhaps be guided by them. You mention palliative care in the title of your post.
If, to be realistic, if this is the way forward then the hospital perhaps can talk you through the options.
Have you got a local hospice, I did not realise the range of services which most offer.
Perhaps just take it a step at a time.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses
We are here for you to use as a sounding board.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
The main thing is that you are very kind to yourselves and look after yourselves and please do keep posting.
Hi @Clare28
Firstly welcome to the forum and thank you for posting.
You’ve received a great response from @Heidi-J-BloodCancerUK and @Erica so can only really echo what they’ve said.
I lost my sister to cancer almost 10 years ago with an 8month period of her being perfectly fine to passing away.
I often think about her final months/days/weeks and think if I could go back in time would I have done this or that or acted differently, spent the time I had with her differently… it’s a very common theme when going through any bereavement.
Cancer is such a cruel thing in that it often when treatment fails and the body finally gives up the fight that death becomes more of a reality not only to you but to the people around you.
Death is an inevitable thing but as some would never want to know when it comes, some would. I’m not sure if living life makes it any easier/enjoyable/memorable with either choice.
On reflection of my own experience and having cancer myself.
I would definitely say it’s best to have that conversation with your mother in doing and catering to what she wants. Fighting and being in denial against what is happening could waste and eat away valuable time and conversation and final memories you can share together.
I know there is no best time to talk about those things but not knowing what they want or wanted can be some of the biggest regrets when the time happens. It also helps when others have different views of what they think they want which differ to yours and you kinda need the person who’s passed view to settle the argument so to say.
I think it’s admirable to remain positive and it’s a sign of love and care but sometimes as much as it happens reality and destiny catches up with us.
Discover your mums dreams and wishes of the past and seek comfort in the ones achieved. Find out the dreams and wishes for the future and how they would like to be remembered and honoured.
Peoples main fear is not being remembered and that they didn’t have a lasting impact on the world they were part of… so what maybe comforting is having that discussion making it less lonely for all.
Hi @Heidi-J-BloodCancerUK , @Erica @Rammie18 thank you so much for your responses, really appreciate it.
Our CNS left, I can still contact the team but have lost that relationship built with her.
We have been refeered to a local Hospice they have been amazing, whilst it lasts as funding is an issue. Quiet right i was totally unaware of all their services provided and wishes i had accessed them sooner.
This has been a long and tough journey, it is cruel what cancer does to people.
Mom is a fighter how much is she doing this for me rather than for her i not sure.
Mom considering all things has reasonably good quality of life and thats all we can ask & hope for, long it may continue.
Your right Reality is coming and as much as i dont want it to it is.
I do feel very fortunate to have had this time with mom, some people dont and for that Im so grateful. We have made and still are making wonderful memories
Im scared of what & how the ending will be i suppose.
Ill reach out with your team tomorrow
Thank you aĺl
Hi @Clare28
I don’t have much advice but just wanted to let you know I’m going through very similar with my dad now. He was on Aza and Venetoclax for 7 months, then had a lovely 7 months of normal life before relapsing at the beginning of May. We are now into palliative care stage, getting him home from hospital tomorrow hopefully where we will make him as comfortable as we can at home before moving him to a hospice in his final weeks (if there is room).
Watching my dad deteriorate is one of the hardest things I’ve ever done. At 80, just 2 months before his diagnosis he was hooning around the Moroccan desert in a 4x4. Now less than 2 years later he can’t even stand up.
We have used the last few weeks to ask eachother questions we’ve been bottling up for years. And actually last year I wrote him and mum a letter, setting out (kindly) some things I needed to say and thanking them for everything they’ve done for me.
Right now I control what I can and fall apart when I need to. I have a friend who went through the same with her mum a few years ago and she had some practical advice about caring for someone at home. If that’s your situation I would be happy to share.
Wishing you all the best.
Ilona