Hi Kathy, Oh my gosh, I had no idea about your equestrian background! That was a perfect phrase for you then. 🐎. I had no formal training but spent a lot of time with horses growing up, spending summers on my grandma’s farm. Mostly road bareback on old Sam. He and I spent a lot of sunny days trotting over the hills and through the woods.

Back to reality… I’m thinking, for your doctor, it’s a tough position for him. He has potential options for you to slow the progression or maybe put you into remission again. From his perspective I’m expecting he sees you as a tenacious and healthy woman with no co-morbidities except for these pesky re-emerging mutated cells. A woman who could have quite a few more good years ahead if you gave some of the new meds a try.

While they are classified as a chemo medication, they’re taken orally and generally better tolerated. There’s a targeted med for the IDH2 mutation that can slow the progression. I had to take an abrogating med that targeted the FLT3 mutation between induction and 2 consolidation cycles. I had no discernible side effects. Just tossing that out there!

But from your perspective, believe me, I completely understand! Your doctor has never been through the rigors of induction/consolidation and the subsequent chemo in dealing with AML. It’s not for sissies, that’s for darned sure. I was reflecting on a few of my weaker moments of treatment while considering what to write to you this morning. No one can prepare you for that ahead of time and once you go through it, there can be some knee jerk reactions of “burning your hand a stove and not wanting to ever do that again”. Not going forward with treatment is an absolutely personal choice! If you’re at peace with this decision, then I hope, by your being honest and pragmatic, this will have your doctor on board to help you along this path you’ve chosen.

The two re-emerging mutations in your bmb and now in your blood are indicting that some of them eluded chemo and are now replicating and coming out to play again. If you choose not to intervene, from my understanding it is a matter of time before they start crowding out the healthy cells. But as your doctor indicated, this will be slow and steady.
The good news is that the FLT3 mutation hasn’t shown up again. The FLT3 gene helps regulate cell survival and reproduction. The gene mutation causes immature blood cells to multiply uncontrollably.

It’s a cold and blustery day in the north woods of Wisconsin. Time to haul out the winter jacket and sock hat for my walk today! Leaves are flying everywhere!
Write anytime, Kathy!