Hello my name is Liliee. My mum Carol ( 60 years old) has been going through a really hard time since July 17th 2024 when she first got diagnosed with Myelodysplastic syndrome (MDS) it then mutated this year to Acute myeloid leukaemia (AML).
She went for the intensive treatment (Vyxeous) results have just come back that it didn’t work we’re still waiting for one of the results to come back. Mum was in ICU fighting inflamation on her lungs and heart with sepsis infection . We really didn’t know if she was going to make it but they gave her 3 days of strong steroids that worked and her breathing ect has been fine since and the inflamation in her lungs went down by 50%. But her heart fraction is 40%, they have given her heart medication to help protect the heart but she needs to start next treatment as this form of leukemia is very aggressive she is most likely going to start Azacitidine & Ventetoclax on Monday just wondering have people in similar situation got on well with this? I’ve heard stories of it helping to get people into remission even with the TP53 mutation. She’s just worried with the effect it would put on her heart.
I’m finding it hard to picture my mum not being here and not making it through this and really don’t know how I’ll cope. She’s the person I speak to every single day and is my rock in life and the thought of her not being here breaks my heart and I don’t know how I would ever cope with that. I just want to hold onto the hope that the doctors have that this treatment might work and go from there.
Trying to get my thoughts out on paper and see if that can help me as I’m really struggling especially with thinking every moment might be the last one with her.
this is such a hard journey to be on for the person going through it and the families and loved ones.
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Hello there Liliee, and welcome to the forum.
Thank you for sharing what you and your Mum are facing; you’ve been so open and I can really see how hard this is for you, and how much you’re holding all at once. Many people here have been in a similar place - trying to keep themselves steady while someone they love so deeply is going through something so frightening - and although everyone’s story is different, I hope you’ll find some comfort and solidarity in the shared experiences within this community.
I can’t speak to the medical side myself, but our brilliant @BloodCancerUK_Nurses can (tagging them here). And if you’d ever rather talk things through with them rather than type it out, you’re always welcome to call our Support Line on 0808 2080 888.
I also wanted to share this page, which I hope might be helpful: Looking after yourself when someone you love has blood cancer.
Please take good care of yourself whilst you and your family navigate this difficult time, and know you can use this forum any time you need to talk through the fear, the uncertainty, or just the weight of it all. You don’t have to hold this on your own.
Ceri - Blood Cancer UK Support Services Team
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Hi @evanslynwen ,
I am sorry to hear about your mum and the difficult time you are all experiencing. It is so hard seeing someone you love suffering so much and its understandable that you are struggling. I echo all the information and advice @Ceri_BloodCancerUK has already given you and if it would be helpful to talk this through or we can support you in any way, please do not hesitant to contact the support nurses.
When your mum starts her treatment on Monday, she will be started on a low dose of Venetoclax. She will be closely monitored for adverse affects by the team with blood tests and observations before each dose is increased. I have enclosed some patient information form our colleagues at cancer research which discusses the treatment in more detail which you might find helpful to read Cancer Research UK Venetoclax and Azacitidine
Please look after yourself and know we are all here to support you. Do let us know how you and your mum are getting on.
Take care
Fiona (support services nurse)
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