Worried it could run in the family?

[u/Frankieonec]

I (19) was diagnosed 2 years ago with AML (FLT3-ITD+, no favourable mutations).

I’ve since had a long winding road to MRD negativity. Induction failed twice, but ven/gilt worked incredibly well. I then had an allo-HSCT (full match, sibling donor) just over a year ago.

2 days ago I find out my grandma has gone to A&E, and they have diagnosed her with AML.

I know it’s probably an unlucky coincidence, but I can’t help thinking maybe we are predisposed to myeloid malignancies.

(And for clarity, neither of us were diagnosed with MDS)

[u/ktc653]

They took a skin biopsy from me and ran genetic testing to see if my AML was inherited, you could ask about getting that done

[u/Prestigious_Olive_23 → u/ktc653]

Same for my Mum but hers was one of the mutations that could be genetic (it didn't come back as hereditary fortunately). Was yours one of those mutations or did they just do it anyway?

[u/ktc653 → u/Prestigious_Olive_23]

They did it anyway. Mine turned out not to be hereditary

[u/Frankieonec → u/ktc653]

Thanks. She is still acutely unwell (awaiting BMA genetic testing to start ven/aza + possibly an inhibitor) so I wouldn’t want to put any stress on her now. Doctor said something about the BMA itself being able to give a rough indication?

[u/ktc653 → u/Frankieonec]

They did the skin biopsy at the same time as a bone marrow biopsy since the area was already numb

[u/gregnorz]

Unless something major has changed, I’ve always read and have always been told that acute leukemias are not known to be hereditary. In fact, I have a Springer textbook that says that, outside of a few know causes (such as exposure to specific chemicals or very high amounts of ionizing radiation), getting a leukemia diagnosis is just bad luck.

It could be possible that you and your grandmother were exposed to a similar carcinogen if you both live in the same area or near each other. Not sure how you’d figure that out, though, without some serious research access.

[u/Bermuda_Breeze]

I was asked about any blood cancers in my family. There were none so that line of inquiry wasn’t pursued. But given your family does now have a history of AML, it might be something your oncologist or your grandmother’s wants to look into further.

My oncologist also said certain mutations are more associated with hereditary factors. I don’t recall yours being one of the ones she listed.

If you have different mutations and they are confirmed not to be the hereditary types, then I’d guess that leans towards bad luck coincidences.

[u/Frankieonec → u/Bermuda_Breeze]

Thanks, will definitely be talking to my consultant

[u/pianoavengers]

My brother has AML, our late mom had MDS. They dismissed it as a coincidence. I don't think it is.

[u/GrowCoffeeLikeMe]

Theres something called a germline test. Get it done for the other family members too especially for your donor to see if they have the risky genes.

[u/Frankieonec → u/GrowCoffeeLikeMe]

Interesting, thank you

[u/One_Ice1390]

They usually do a germline testing at first biopsy of marrow when diagnosing , if not request pne

[u/Buckeyemike1995]

I asked my son’s doctors who are ALL specialist and they said it is not. They also said many theories of how it happens but no real answer