Trying to leave room for hope
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The Steinhaus Family
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The Steinhaus Family
This isn't the post I thought I would write today and definitely not the one I wanted to. (Not to be dramatic, but we're feeling a bit dramatic.) It's been a while since the last post. Today was an infusion day at NYU, which is typically what reminds me to finally share a new update. I had about half of a post written, focused on how we anticipate the executive order related to government funding of medical research to impact Andrew's trial, plus other details about how he's been feeling lately. (Mostly good, but tired and a little nauseated.)
Then we saw that Andrew's CA 19-9 lab results—which measure cancer and inflammation activity around the pancreas—shot up 185%. That's after jumping 120% between the first and second immunotherapy days. These are two huge spikes that we do not think are likely to be explained by other factors, like the histotripsy procedure from early January or even inflammation caused by the immunotherapy drug. Both can increase local inflammation, and therefore CA 19-9, but it's improbable to jump this much from those things on back-to-back blood draws. Even Andrew's AI oncologist that he programmed to help us interpret labs and scans was pretty defeatist about the situation. And it usually makes us feel better.
Speaking of improbable, we were told we'd almost certainly be in a different situation right now. The average BRCA-positive pancreas cancer patient who takes a break from chemo by taking Oliparib gets a median of seven months without tumor progression. More encouraging, in Sloan Kettering's version of Andrew's trial, 90% (!) were progression-free after six months.
If what we are assuming based on the CA 19-9 numbers is true—which is that this treatment is failing and he may be kicked off the trial due to progression on his next CT—then that again puts Andrew into a small minority of people who are extremely unlucky.
We do not know for sure the cancer is growing and won't until the next CT on March 7. But it feels bad and sad and scary, but mostly just really surprising. We know there's still room for hope...for this all to be explained by something no one's thought of yet or for God to do something miraculous. Today, it's hard to feel that hope. We're counting on some of you to feel it though, and to pray and reach out to Andrew with encouragement.
Then we saw that Andrew's CA 19-9 lab results—which measure cancer and inflammation activity around the pancreas—shot up 185%. That's after jumping 120% between the first and second immunotherapy days. These are two huge spikes that we do not think are likely to be explained by other factors, like the histotripsy procedure from early January or even inflammation caused by the immunotherapy drug. Both can increase local inflammation, and therefore CA 19-9, but it's improbable to jump this much from those things on back-to-back blood draws. Even Andrew's AI oncologist that he programmed to help us interpret labs and scans was pretty defeatist about the situation. And it usually makes us feel better.
Speaking of improbable, we were told we'd almost certainly be in a different situation right now. The average BRCA-positive pancreas cancer patient who takes a break from chemo by taking Oliparib gets a median of seven months without tumor progression. More encouraging, in Sloan Kettering's version of Andrew's trial, 90% (!) were progression-free after six months.
If what we are assuming based on the CA 19-9 numbers is true—which is that this treatment is failing and he may be kicked off the trial due to progression on his next CT—then that again puts Andrew into a small minority of people who are extremely unlucky.
We do not know for sure the cancer is growing and won't until the next CT on March 7. But it feels bad and sad and scary, but mostly just really surprising. We know there's still room for hope...for this all to be explained by something no one's thought of yet or for God to do something miraculous. Today, it's hard to feel that hope. We're counting on some of you to feel it though, and to pray and reach out to Andrew with encouragement.
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Aunt Merryman
Francesco Deluca
Teri Garner
Mary McGill
Reed konigsmark
Kimberly Yates
You are both warriors. Thank you for gifting the fight. For what it’s worth, I am keeping the hope, prayers prayers, believing and loving you.
David Tamayo
Richard Salsano
Chris Reynolds
Bonnie Ballard
Meredith Conway
Sara.e.golden
CINDI WEBER
Blessed be the name of the LORD our God