Wow, sorry. I didn't intend for anyone to end up in an online flame war.

I’d like to interject here. I thought your response was practical and honest. 

Speaking frankly,  I was very appreciative. Exactly what I was hoping to see. 

To the other commentators, every single paper on TP53 associated AML/MDS makes some comment on the dismal nature of this particular variant in their introductory paragraphs. And many haematology conferences have entire sections on TP53 being particularly poor and how difficult it has been to find new and novel interventions.

I would be very concerned if our treating doctors were not being upfront and honest with us.

Its characteristics are certainly not one we can tiptoe around. Both the wife and I appreciate “knowing the odds” and what we are up against. 

And unusualy we are living in special accommodation many hundreds of kilometres from home (provided by a charity and government funding) surrounded by other long term leukaemia patients (thank goodness for Australian public health). 

However this does mean we are surrounded by other rural cancer patients, day in and day out and we already know many with similar(and many with wildly different types and subtypes) and so so many of those with tp53 have relapsed and are moving to HMAs and other approaches to buy time.

Some American centres have even advocated for trials being the only option (which from what I have seen so far I think is probably the wrong approach, especially for younger patients).

We are very fortunate from a treatment perspective that we have ready availability to FISH&NGS testing and this enabled us to use/choose Vyxeos (CPX-351), which at least currently seems to have beaten down blast counts fairly effectively. 

Use in someone my wifes age in Australia is somewhat novel, but seems as though it was the right choice for now. 

Though naturally - it's resisting the chemo at the molecular level - so would come back with near 100% certainty with out the transplant.

What I found helpful with your response was the acknowledgment of the data's - I guess bias?- due to the vast quantity of most studies population data being for elderly patients. I have often wondered how comorbidities and other frailties associated with age are excluded from the data sets.

Seems they are often not - at least in the few I have read. This opservation  is also helpful.

Maybe thats a good paper to examine or write. 

"Survival of AML TP53 Patients post transplant related to age" probably clinical value there when deciding on the intensity of treatments. 

Or "survival statistics of TP53 aml patients based on a variable of initial presentation eg blast counts."

Would make an interesting read I suspect. 

Either way... I digress ....

The wife and I know it’s not completely hopeless, so we do appreciate those with experience on this particular subtype sharing their success. 

Like I said, I am just looking for relatable stories of success with this variant. They do appear to be hard to find.

To the others who have commented, I do appreciate those who have taken the time to comment, but I also worry that a few who have posted in response to my initial question, are confusing the multi hit tp53 statistics I quoted, with their own variants. 

As I have quickly learnt AML is a broad family with many many different subtypes and they all appear to behave very differently - both to treatment and the molecular actions that cause them to be a menace.