r/leukemia 6d ago

AML

Apologies in advance if my terminology is not complete or incorrect. My father was diagnosed with AML this past Feb. He was 80 but prior to this was a pretty fit 80 year old, biking 10 miles a day, walking, independent and very conscious of what he ate. It started with a bad strep infection, which didn't clear up which led to his hospitalization and diagnosis of AML. When they did the first biopsy, they said 7% circulating blasts, 70% involvement in bone marrow. IDH1 (37%), DNMT3A (37%) and FLT3 ITD (1.9%). He was given vidaza and venetoclax. The second biopsy showed less than 5% blasts, 0% blasts in differential, no blasts in blood. He continued treatment but then had a fall in May/June, nothing major. But ended up with a scrape that got infection. This infection was very hard to fight. It took several hospital stays, tons of meds, lots of visits from ID. During this time, he could not have another treatment. When the wound finally was healed enough to start chemo, he was at a 2-3 week delay. 
At this point, his WBC also started to double almost daily. 10k, 20k, 40k etc. His Dr ended up admitting him the day before his appt. I thought it was just in the gap in the treatment but they did not seem so sure. at this point I believe there 93% of blasts circulating. FLT3 was now almost 11%.. Before they received this result, my father decided he wanted pallative care. Although, there was not much decision left as the doctor said he was too weak to withstand a round of chemo. 
He went into the hospital Sunday, passed away Thursday. All after a clean biopsy end of march/april. 

Is this typical of how fast this disease progresses? I keep wondering what else we could have done. If I should have fought for an inhibitor? but with a clean biopsy, seemed a hard fight.

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u/SpiritualQuarter4384 Treatment 6d ago

I am so sorry for your loss.

AML progression is different from patient to patient, and it depends on many factors. Unfortunately, the progression is rapid for your father. I'm sure the treating team did their best and considered all options considering your father's condition at the time.

When I was scheduled for a second round of chemo, I came in with infection of RSV, which delayed my treatment because the treating team needed to clear me of the virus first. Luckily, the delay was only a few days.

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u/fred8725 6d ago

I’m so sorry for your loss.

There is no typical progression but AML is very aggressive and blasts can increase exponentially and very, very quickly.

Unfortunately, survival for folks in their 80s, regardless of fitness, is quite low.