Hoping for Hope
Last updated: June 2023
My husband was diagnosed with multiple myeloma almost 4 years ago. This diagnosis came roughly two weeks after his 40th birthday, and we had literally never heard of this disease prior to his diagnosis. I am writing this as I sit next to his hospital bed, at 9:21 pm, waiting for hospital staff to transport him to get an MRI.
He is supposed to receive his T-cell infusion tomorrow, but ….there is a possibility that his recent confusion and muscle weakness/twitching are indicators of a separate issue that would (a) require separate treatment and (b) could delay or result in the cancellation of his CAR-T therapy.
In less than 4 years, he has received all of the “promising” treatments: Cytoxan, Revlimid, a stem cell transplant, panobinostat, venclexta, Dara. Only one of those regimens provided a progression-free period of almost 2 years, but the side effects were fairly debilitating. Or maybe it was the fact that he has been so heavily treated. We thought the SCT would be the holy grail, and less than 6 months later, we were discussing new treatment options again, as that one failed. Two more failed treatments later within a 7-month period led us to “salvage therapy”, which is just as scary and remedial as it sounds.
Two years later, and we are hoping that he can receive his long-awaited CAR-T therapy tomorrow as scheduled. We are not the success story. We are not the hashtag of strength and victory and bells ringing while onlookers clap in joy and support. We are hoping, as we have for the last 4 years, that THIS treatment is successful. Success, in this context, is a progression-free disease period of roughly a year (maybe two). And after that, it doesn’t sound like there are any other options. There are no long-term plans, medical or otherwise. In this precise moment, in the next 24 hours, with HIS particular disease, we are just hoping for Hope.
What blood cancer were you diagnosed with?