AML and TP53

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Hello.

My mother was diagnosed with AML just over four weeks ago; it was then confirmed that she has TP53  - making it harder to treat. She hasn't started any treatment yet as she may be joining a study that is trialling a new drug. 

We are all worried that the Drs don't seem too concerned about her starting her on treatment quickly; they say that she is stable and that it doesn't make any difference whether you treat AML early or later. We can't see why this would be? She looks really well  - and is carrying on with her daily activities as she usually does.

It would be great to hear from anyone with or living with someone with AML and TP53.

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.

    It can be challenging when someone gets diagnosed with a blood cancer and there is no rush to treat. But this can often be the case with some types of blood cancer, my type is very different (Non Hodgkin's Lymphoma) but it took over 14 years before full on treatment was required. Active Monitoring is often the way forward and treatment is kept until it will be most effective.

    Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

    For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Polly, my husband has been diagnosed with AML and TP53, would love to hear how your Mum is getting on and whether she joined a trial. 

  • Hi  

    My Mum did get on a trial at the Royal Marsden but she didn't get on the new drug arm of it, she is on the conventional treatment. She started this in June and had a bit of a delay after her first round of trearment.

    She is now on her 3rd cycle (it's every 4 weeks) and she seems really well. Her levels have come down significantly, so fingers crossed.

    How is your husband anx how are you? 

    Xx

  • For the purposes of the forum, the weirdest thing happened today. I was sat with my husband at the Marsden as he was having a blood transfusion. In the same bay were what looked like  a mother and daughter who I just had a feeling were Polly and her Mum and would you believe it, they were! We have now met in person and both my husband and Polly’s lovely Mum are on the same trial. What a small world! 

  • It is a small world!! So amazing to meet  and her husband. It was so good to chat to someone going through the same thing. 

  • Hello 

    Just catching up on the forums. I have been diagnosed with AML and TP53. Starting chemotherapy soon. No symptoms. Had bone marrow biopsy following routine blood test at GP and blood count was low in white blood cells, platelets and neutrophils. Very challenging mentally always been in good health..sounds like the Marsden treatment has been going well.. I have been treated at Hammersmith.

    best wishes 

    john

  • Hi Pollly I have also been diagnosed with AML and TP53 about a month ago. I have no symptoms feel fit and well. The medical team have been strongly advising treatment from the beginning. Just wondering how your mum is getting on. Also interested from the wider community if they have been diagnosed with AML with no symptoms or know someone who has. Would be interesting to know how common it is to have symptomless AML. Is it classified as a fast growing cancer hence the doctors recommend early treatment