AML, TP53 and chromosome defects

Recent diagnosis
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Hi, my Mum was recently diagnosed with Acute Myeloid Leukaemia. We were told at the initial diagnosis meeting about the option of intensive chemo but were then just awaiting lung and heart scans.

When we returned, the scans were all good. She scored 0 on a health check which means she is extremely fit and healthy. Unfortunately they told us at this point that she has a TP53 gene mutation and more than 3 chromosome defects. We hadn’t even known this was being checked so that was a shock.

The result of this is that the chemo which we were previously told was curative, is now very unlikely to work. And if it does work, the Acute Myeloid Leukaemia is likely to return quickly.

She was given the option of still going for the treatment, with all it’s reduced chances and the added worry of how it will affect her.

Or just continuing with blood transfusions and letting nature take its course.

She asked, if she took this option, what the prognosis is and if she would be here at Christmas. The doctor said she would hope so.
But we would only be talking of months. But she would know she could make the most of these months.

She’s decided to take the chemo option. But she’s still struggling, as are we, with whether this is the right option…
What if she has chemo and it doesn’t work and she’s spent what precious little time she has in hospital?

I don’t really know what I expect anyone to say… I just want things back how they were before. It doesn’t feel real as she’s not even ill and wouldn’t have even gone to the Dr yet if it hadn’t been for a routine blood test that showed this up.

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Hi @Jupiter
So so sorry to hear that about your mum. I imagine you are all over the place, trying to get your head around things, especially as it sounds as if you were also hit with things you weren’t prepared for? I know you say you don’t know what you want people to say but I guess what you need is a bit of support? I have found this forum is a really safe place to vent emotions and more importantly to feel you are not alone. I haven’t actually used it yet but the helpline may be able to offer some support and answer the myriad of questions you probably have at the moment.
I can feel the emotion in your post and at the moment I guess, this is overwhelming. Please look after yourself. I’m sure others will post later, but sending virtual hugs.
Alex

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I’m really sorry to hear about your Mum’s diagnosis of Acute Myeloid Leukaemia and the difficult decisions you and your family are facing. It’s completely understandable to feel overwhelmed and unsure about the best course of action.

When it comes to treatment decisions, it’s important to have open and honest conversations with your Mum’s healthcare team. They can provide you with detailed information about the potential benefits, risks, and expected outcomes of the treatment options available. They will consider your Mum’s overall health, the specific characteristics of her disease, and any genetic mutations or chromosome defects in determining the most appropriate treatment approach.

While no one can predict the outcome with certainty, the healthcare team’s expertise and experience can guide you in making an informed decision. It’s essential to have a support system in place, including your healthcare team, family, and friends, to help you navigate through this challenging time.

It’s also completely normal to feel a range of emotions, including the desire for things to go back to how they were before. Remember that it’s okay to seek emotional support for yourself and your family, whether through counseling, support groups, or talking with loved ones.

Ultimately, the decision about treatment should be based on your Mum’s wishes, values, and personal goals. It may be helpful to encourage open and ongoing communication with her healthcare team, as well as discussing her thoughts, concerns, and hopes as she navigates this journey.

Take things one step at a time, lean on your support network, and remember to prioritize self-care during this challenging time.

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@Jupiter I am so glad that you have found it and your comprehensive post.
I cannot imagine how you are all feeling and thinking right now.
I think it helps me just to put fingers to keyboard or pen to paper sometimes.
I believe in writing down all my questions before medical appointments, no question is silly, it just really prepares me.
It is ultimately your Mum’s decision, but if you can be her sounding board, perhaps give her your views and just be her support.
You must all be in shock and yes, want things back as they were before.
Look after yourselves and be very kind to yourselves we are here for you and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Please keep posting.

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Welcome @Georgelopez to our forum.
You gave @Jupiter a very comprehensive response, I look forward to hearing more about you.
Look after yourself.

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Hi @Jupiter and welcome to the forum. I’m really glad you posted and can see you have received some really supportive posts already.
I can only imagine how you all feel. I think you would have questioned either option - it’s such a difficult decision to make and not knowing what’s to come and how your mum will react and cope is hard - the unknown is always hard.
When a question pops in to your head make sure you wrote it down, and keep posting, we are all here for you X

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