What plan??
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The Steinhaus Family
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The Steinhaus Family
Over the past 10 months, we’ve learned that it’s pointless to anchor to a plan. Plans change fast and drastically around here, even when you think something is a done deal.
Last Friday, we learned that Andrew needed a much longer period without any treatment before he could start a KRAS trial. This is disappointing and scary because it’s already been three months since he’s had effective drugs, and his cancer continues to grow. The doctors at Hackensack—the only hospital that had trial slots open—asked for an exception from the trial drug company Incyte but they were firm on a 28-day washout. That puts us in mid-April.
On Monday, we went to Hackensack to sign papers. While we thought we’d get to pick between two Incyte trials, there was only one slot on one—and not the one we were going to pick. But they are similar constructs and drugs, so we just went with that.
We talked a lot about going on a trial being a calculated risk. Yes, it’s possible it doesn’t work, and we return to chemo in bad shape. But KRAS treatments have shown promising results in trials, and doctors at NYU, Sloan, and Hackensack agreed that now is the right time to take a risk. Andrew looks and feels well and hasn’t developed other health problems that could preclude him from trials down the road.
The NYU doc in particular encouraged us to move forward in a phone call Tuesday morning. In an ideal world, he said we’d be on a trial from a different drug maker, Revolution Medicine, that’s much farther along in developing KRAS drugs. They have positive real human data, not just mice models. However, their slots are 100% full across the country, and we should go with what’s in hand.
The NYU doc in particular encouraged us to move forward in a phone call Tuesday morning. In an ideal world, he said we’d be on a trial from a different drug maker, Revolution Medicine, that’s much farther along in developing KRAS drugs. They have positive real human data, not just mice models. However, their slots are 100% full across the country, and we should go with what’s in hand.
We spent the majority of the day at Hackensack learning about the protocol for a phase 1 trial. Because the primary goals are safety and tolerability, every 28-day cycle, he’s at the hospital for 3-5 full days. Over an 8-12 hour observation period, he’ll have three EKGs per hour and many blood draws. Like the last trial at NYU, there’s a CT every 8 weeks to check progress and assess whether to continue.
Andrew and I are both guarding ourselves and struggling to feel excited. So quickly failing the last trial—which was so much more likely to be successful, and he was in better shape cancer-wise—stole our innocence. We are going into the next phase with some hopefulness but a lot more trepidation.
Last night just before 8pm, the NYU doctor called while he was boarding a plane to tell us that as of 7pm, Revolution Medicine is opening 15 slots. I assume nationwide, but we didn’t get into it. This time they will compare monotherapy (one KRAS pill that targets a specific gene mutation, G12D) vs. a combo (G12D drug + a pan-RAS drug, meant to target multiple KRAS mutations). We believe this trial is our new best hope. And what made us saddest last week—a long washout period—has given us a chance to get on this new trial.
It’s not a done deal, and the doctor will email Rev Med again on Monday at 8am to try and confirm. Today is Wesley’s 1st birthday, so it’s already a happy day, made even sweeter by something new to hope for.
Elyse Steinhaus
8 months ago
Comments
Jane Terkoski
Kaye Cagle
Francesco Deluca
Riza Cruz
Chris Reynolds
Blessings on little Wesley and all the joy he has given you this first year of his precious life. And blessings on big sister Vivi.
Leslie Garrett
Alice Champagne
Praying for Gods peace, love and hope to carry you through with perseverance.
Deb Long
Mary Alice Cashin
Abdulla Zubair
Joni Woolf
Bonnie Ballard
Mary McGill