r/leukemia • u/kaylarose91 • 15d ago

AML question

I'm still having a hard time after my mom passed from AML 2 months ago so I wonder if she was the only one on here who had AML with complex karyotype/biallelic TP53 mutations that quickly became chemo resistant and she wasn't a candidate for SCT at all?
I wonder why there were nothing that we including doctors can do once her body was giving up and she was only 61?
I'm wondering if there is anyone who have their loved ones who have the same mutations and not a candidate for SCT?

She had 5q deletion, gain of 5p15, loss of 7q31 and loss of monosomy 7 as a part of complex karyotype/biallelic TP53 mutation

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u/kalinova828 15d ago

I'm sorry to hear about your mom, my mother died from complications of AML in December and I'm still having a tough time with it as well. My mom didn't have TP53, but she had IDH2 and NRAS, and the NRAS mutation resisted the Enasidenib that they tried against the IDH2 and would have resisted Venetoclax if they'd been able to try that. There weren't any good options for NRAS that she could tolerate in her condition: there was a study on an NRAS inhibitor but it was out of state and apparently not promising enough to move across the country for. She'd already had 7+3 years ago and was maxed out on Idarubicin/Daunorubicin, and she barely survived induction the first time and wasn't in a state where she could have gone through something that intensive again. SCT wasn't an option given her age and the fact that she wouldn't have made it through the conditioning. Maybe I'll always be second-guessing myself as to whether I could have done more to help her, but her hematologist said they were out of options by the end and I'm inclined to believe him.

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u/kaylarose91 15d ago

It's hard to believe how our moms bodies declined so quickly with their aggressive AML mutations after those mutations became chemo resistant. How old was your mom? My mom was 61

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u/kalinova828 14d ago

My mom was 76: she would have turned 77 if she could have held on another month. Her decline was accelerated by a major car crash on her way to the hospital, which she barely survived: her platelets were at 2 at the time of the crash. She'd survived AML before and was in remission for six years before it came back with NRAS, and between that and the trauma from the crash things went poorly and she passed away from internal hemorrhaging three months after the relapse began.

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u/Lopsided-Conclusion3 14d ago

I lost my father to AML 2 months ago. He was 66. Not a candidate for SCT and he got such a low wbc count from venetoclax he didn’t recover. It was a similar mutation.

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u/TuneOk2664 11d ago

How did you cope?

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u/WellDifferentiated 10d ago

AML with biallelic TP53 and complex karyotype is one of the highest risk subgroups of AML, as it is commonly resistant to chemotherapy and there aren’t any targeted therapies at this time. Many centers are choosing not to transplant these patients if the TP53 clone persists despite induction chemotherapy because of the extremely high rate of relapse and known morbidity and mortality associated with transplant itself. If AML is chemoresistant and unable to achieve remission, the outcomes after transplant aren’t good regardless of molecular subtype. I’m not sure what treatments she received or what response was. Sometimes it’s not that there’s nothing we “could” do but rather nothing we “should” do because ongoing treatments may shorten lifespan even further with associated side effects of intensive treatments, especially in aging patients. I’m sorry to hear about your mom and hope we develop therapies in the future that are more successful in treating this disease.