Hope landed on Thursday. I never expected its physical manifestation to be three small syringes, but I also never expected to be in an n of 1 trial with stage IV cancer at 25. And yet, here we are—sitting tall albeit tattered, leading with hope because the alternative is “an abyss, is just a hole, a darkness, a nothingness. Who wants that?” -
@sza
Hope is few and far between in the world of rhabdo. The standard of care treatment hasn’t changed since the 1980s, with dismal outcomes of 30% five-year survival, that drops to 5% once the cancer returns (for my subtype the likelihood is 80%).
My mom said “nope!” and began laying the foundation for a different path. Some might even call it a reroute. Knowing rhabdo develops resistance to chemo, she focused her sights on a targeted immunotherapy.
Last fall, the Kasey Altman Research Fund via
@reininsarcoma partnered with
@mayoclinic to fund the creation of a personalized neoantigen vaccine. The vax is targeted to the new proteins expressed by my specific tumor. I won’t pretend to understand the technicalities, but what I will say is a group of extremely smart people are hopeful about this. Not sold and not opposed; but hopeful.
So I’m letting hope steer the ship, because that’s what this treatment represents. That’s what
@mayoclinic represents. And that’s what every donation to my research fund represents.