Holding pattern
In support of
The Steinhaus Family
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The Steinhaus Family
We've had a nice couple weeks since Andrew's last chemo in mid December—which we had hoped would be his final one—with Andrew feeling well and able to enjoy the holidays with our family. Alas, today we are back at NYU for more chemo.
We are here because we're stuck in a holding pattern, waiting to schedule the histotripsy—the high-frequency ultrasound that targets, and may be able to eradicate, a superficial liver lesion—before "maintenance" begins. When we say maintenance, we mean enrolling in the clinical trial that combines a pill meant to keep the cancer stable and an immunotherapy drug that's experimental for BRCA-positive pancreatic cancer patients. He has a 50/50 shot of getting the immunotherapy drug and will receive the maintenance pill either way. The trial requires chemo within 30 days of enrollment, so we're resetting the clock today while we await a histotripsy date.
We met with one of two histotripsy doctors two weeks ago and learned more about it. It's done in an outpatient setting with minimal side effects and downtime. It's a very new procedure—NYU has only performed it on about 50 patients and it is not widely available in US hospitals. It's shown promising results in some patients when targeting a well-positioned liver tumor within a certain size range. Andrew's largest liver tumor matches the size and location requirements to be a procedure candidate.
We initially liked the idea of histotripsy because it may initiate an immune response, which could help Andrew's body fight cancer cells more effectively on its own. Now it's even more important to do ASAP, as we believe that the liver tumor it will target has been growing. This was my concern after reading the CT radiology report Andrew got in the ER a few weeks ago (even though his medical oncologist was not worried at the time) and because Andrew's CA 19-9 lab test has been consistently rising.
You may remember that CA 19-9 is the blood test that roughly measures cancer activity and treatment effectiveness. We excitedly watched the lab results drop from ~4,700 to well under the normal range of <47. For the last two months, however, it's been steadily climbing. Today it is 153, up from the 90s two weeks ago. This could suggest that Andrew may be experiencing chemo resistance in this particular tumor. Killing that tumor with the histotripsy could put him back on track if it is indeed the only spot that's mounted a resistance.
Still, this is particularly nerve-wracking in the context of ending chemo and going on maintenance because A) maintenance ends if your cancer is growing and B) we'd been cautiously optimistic about Andrew's chances of durable maintenance based on his otherwise strong response to chemo. On average, people stay on maintenance for 6-8 months, but a sizable minority have stable disease on maintenance for years. We have been hopeful that Andrew would be one of those people.
For those of you looking for specific prayer requests, here are several:
1) For the histotripsy to be scheduled today or tomorrow. The holdup seems to be that the interventional radiologist needed to return from vacation to do it, and he's apparently back today. We were told a few weeks ago that January 9 was open, and we want to keep that date.
2) That insurance won't be a barrier. Because histotripsy is new, Aetna considers it experimental and specifically disallows coverage. The doctor says we may be able to get around it, which would obviously be ideal, but we are not willing to wait to figure it out if it means delaying treatment. We may need to pay out of pocket upfront in order to keep things moving.
3) That the histotripsy will be effective in getting rid of this particular liver tumor and that he can stay on maintenance indefinitely.
We are here because we're stuck in a holding pattern, waiting to schedule the histotripsy—the high-frequency ultrasound that targets, and may be able to eradicate, a superficial liver lesion—before "maintenance" begins. When we say maintenance, we mean enrolling in the clinical trial that combines a pill meant to keep the cancer stable and an immunotherapy drug that's experimental for BRCA-positive pancreatic cancer patients. He has a 50/50 shot of getting the immunotherapy drug and will receive the maintenance pill either way. The trial requires chemo within 30 days of enrollment, so we're resetting the clock today while we await a histotripsy date.
We met with one of two histotripsy doctors two weeks ago and learned more about it. It's done in an outpatient setting with minimal side effects and downtime. It's a very new procedure—NYU has only performed it on about 50 patients and it is not widely available in US hospitals. It's shown promising results in some patients when targeting a well-positioned liver tumor within a certain size range. Andrew's largest liver tumor matches the size and location requirements to be a procedure candidate.
We initially liked the idea of histotripsy because it may initiate an immune response, which could help Andrew's body fight cancer cells more effectively on its own. Now it's even more important to do ASAP, as we believe that the liver tumor it will target has been growing. This was my concern after reading the CT radiology report Andrew got in the ER a few weeks ago (even though his medical oncologist was not worried at the time) and because Andrew's CA 19-9 lab test has been consistently rising.
You may remember that CA 19-9 is the blood test that roughly measures cancer activity and treatment effectiveness. We excitedly watched the lab results drop from ~4,700 to well under the normal range of <47. For the last two months, however, it's been steadily climbing. Today it is 153, up from the 90s two weeks ago. This could suggest that Andrew may be experiencing chemo resistance in this particular tumor. Killing that tumor with the histotripsy could put him back on track if it is indeed the only spot that's mounted a resistance.
Still, this is particularly nerve-wracking in the context of ending chemo and going on maintenance because A) maintenance ends if your cancer is growing and B) we'd been cautiously optimistic about Andrew's chances of durable maintenance based on his otherwise strong response to chemo. On average, people stay on maintenance for 6-8 months, but a sizable minority have stable disease on maintenance for years. We have been hopeful that Andrew would be one of those people.
For those of you looking for specific prayer requests, here are several:
1) For the histotripsy to be scheduled today or tomorrow. The holdup seems to be that the interventional radiologist needed to return from vacation to do it, and he's apparently back today. We were told a few weeks ago that January 9 was open, and we want to keep that date.
2) That insurance won't be a barrier. Because histotripsy is new, Aetna considers it experimental and specifically disallows coverage. The doctor says we may be able to get around it, which would obviously be ideal, but we are not willing to wait to figure it out if it means delaying treatment. We may need to pay out of pocket upfront in order to keep things moving.
3) That the histotripsy will be effective in getting rid of this particular liver tumor and that he can stay on maintenance indefinitely.
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Mary McGill
Joni Woolf
Chris Reynolds
Teri Garner