AML TP53 at 80 years old

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Hi everyone

My mum was diagnosed with Acute myeloid leukaemia ('AML') with TP53 in August last year and was told there is nothing else they can do apart from give her injectable chemo for a week, once a month. Fortunately, she is still doing okay but I feel like we’re living like a ticking time bomb, waiting for the inevitable to happen. I am so close to my mum and can’t stand the thought of losing her.

I know I shouldn’t have but I did google this. Nobody seems to live longer than a year. Do you know what the longest is that anyone has lived with Acute myeloid leukaemia ('AML') TP53 without stem cell transplant please? I’d just like to have a little bit of hope.

Sarah

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Hi @Boo1

I’m sorry to hear about your Mum’s diagnosis.

It’s always a shock and you are bound to be worried.

Google is never a good place to look for prognosis. Your Mum’s Clinical Team are the best people to ask as everyone is different.

I’ve had various people on my cancer journey who like your Mum couldn’t have a Stem Cell Transplant and living with Acute myeloid leukaemia ('AML')

Some managed 30% more than their prognosis. Others still going strong two and half years after diagnosis.

I don’t know if the individuals I refer to had TP53 mutation.

Advances are always being made with treatment.

Remember too that numbers you read are averages.

Hope that helps you and best wishes for your Mum too

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Hi Duncan

Thank you for taking the time to reply and being so informative.

I just need to offload sometimes especially as my mum doesn’t like talking about her illness.

And yes, it did help.

Sarah

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Hi @Boo1

Glad to have helped.

I know your Mum’s generation either want to talk about illness or in many cases don’t want to talk about it all.

Everyone is different and there’s no right or wrong.

Feel free to offload as much as you need to.

Us dealing with Cancer and those who support us understand how difficult it is.

One thing my diagnosis taught me to do was live in the present and enjoy.

I’m wondering if you saying your Mum is on injections a week of each month means she’s having Azacitidine?

Not sure if there’s a Maggies Centre close to you.

I found it a really great place to go when I was down at the hospital for treatment in Inverness.

You can talk with the staff as much or as little as you want. Always get a nice cuppa and biscuits plus gets you away from busyness of hospital.

Take care

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Hi @Boo1, and welcome to the forum - though I’m sorry about what’s brought you here.

I’m glad @DuncanB’s message helped. He’s quite right about statistics, and that what matters most is what your mum’s clinical team can tell you about her individual situation, as they’re really the only ones who can give you a meaningful answer to that question.

What struck me reading your posts is how much you’re carrying as a daughter, particularly when your mum isn’t someone who wants to talk about her illness. The forum is absolutely here for you to offload, as much as you need to, and there are many members who have been or are in caring roles themselves. Our lovely Forum Support Volunteer @alisonnoble, for example.

We also have some information on our website specifically about looking after yourself when someone you love has blood cancer, which you might find useful.

It’s worth knowing that our Support Line is there for family members just as much as it is for people with blood cancer themselves. If you ever want to talk things through you’re very welcome to call on 0808 2080 888 or email support@bloodcancer.org.uk.

Take care,

Ceri - Blood Cancer UK Support Services

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Hello there @Boo1, I wanted to welcome you to the forum and to say how sorry I am to read of your mum’s diagnosis with Acute myeloid leukaemia ('AML'). Isn’t it a lot to take in and a lot of worry to be handling?

I see dear @DuncanB and @Ceri_BloodCancerUK have offered their wisdom as always and I can’t add to what they’ve suggested. However, when you fancy a read, here is the great Blood Cancer UK information about Acute myeloid leukaemia ('AML'): Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK

Although I live with a different but related type of myeloid blood cancer to your mum called Polycythaemia vera ('PV'), I’m realising many concerns are shared between those of us diagnosed with blood cancers and our loved ones. It’s so lovely that you’re here to support your mum and I hope it feels supportive for you too.

For what it’s worth regarding that terrifying prognosis you read online, I’ve never had a discussion with my haematologists about longevity in years, aside from being advised to avoid Dr Google, which is the one tip I’d suggest to you now. A lot of the information at the end of a quick search online is generalised at best and years out of date at worst.

If you’d like to find others around the forum who have shared about Acute myeloid leukaemia ('AML') or specifically the TP53 gene mutation then the search box at the top and Related Topics below will help.

Do please keep us posted about how you and your mum get on @Boo1.

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