← Return to MDS diagnosis with DDX41 Germline and Somatic

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @asarnesejr It’s hard to tell what future medical technology will come next. CAR-T therapy has really made a significant impact into curing some blood cancers. But there remain some mutations that pose challenges for that therapy. There are targeted therapies, biologic/genetic therapies, bone marrow transplants depending on what better fits the illness. Fortunately we have options and I’m assuming that will broaden as cancer research continues.
Regarding the DDX41 mutation, as we’ve talked about before in our discussions, according to data from studies, along with the conversations with @sherbs and @fortuitous, who also have the DDX41 mutation causing their AML, a stem cell transplant isn’t always the better option for treating AML with this mutation.
Some patients with this mutations may respond better with medications than with the bone marrow transplant. That’s why it’s critical to have an evaluation with a specialist who understands the complexities of this mutation.

I’d encourage you to look back at some of the first comments in this discussion by clicking the box that says #1. You’ll find links to the conversations that might be worth revisiting. ☺️

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Replies to "Hi @asarnesejr It’s hard to tell what future medical technology will come next. CAR-T therapy has..."

@loribmt Hi again. I went for my 2-month checkup with my hematologist on 07/13. After the 1-year mark, all my numbers stayed the same: WBC between 1.6 / 2.2, Hemoglobin between 12.2 / 14.4, Platelets between 67 / 92, ANC between 0.7 / 1.1. These numbers aren't trending downward, rather bouncing all around over the 9 CBCs I've had.

My IPSS-M risk score is -2.25 c/w very low risk.

Both my hematologist and MDS specialist have approved moving my CBC checkups from 2-month to 3-month intervals.

My MDS specialist noted that in my paperwork, in 2012 my platelets were at 153. She feels that my MDS was active at that point.

Does this make any sense to you. Obviously, it's good news that my numbers have stayed steady for a year, yet I feel like a rock is about to come crashing down on me with each visit. To be honest, it's scary that 1-year has gone by already, and I'm one year closer to the inevitable. You have much experience, what are your thoughts on all of this?