Chemo cycle 2
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The Steinhaus Family
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The Steinhaus Family
Shortly after my last update, Andrew got a CT. This was much earlier than planned per trial protocol, but the nonlinear explosion of CA 19-9 values required investigation. The images showed modest/almost stable tumor growth of about 9%, but there were two new lung clots. When Andrew was first diagnosed, the clots and strokes were the most serious indication of out-of-control cancer, even more than the number or size of tumors. The combination of CA 19-9 and clots convinced the oncologist to immediately withdraw Andrew from the KRAS trial, though he admitted that the whole situation was confusing and atypical. This is a theme.
Did the KRAS drug trigger some kind of hyper progression of biochemical cancer activity? Were things already going poorly before the trial and there wasn’t enough time for the KRAS drug to fix anything? We do not know—and won’t know—these answers. The downside to not returning to chemo ASAP was too great.
Andrew started a new chemo regimen last Wednesday. It’s two weeks on, one week off. There are three drugs, and two can cause neuropathy. Andrew is worried about this, as he still has some numbness in his hands and feet from the last chemo. He ordered frozen mitts and footies to wear during parts of the infusion, which may curb some effects.
Last Friday evening, Andrew had sudden, 8/10 pain in his legs and ankles. It went away by Saturday morning but lasted hours and was excruciating. We’re anxious to set a new pain plan with palliative care for how to handle this if it happens again. He also experienced severe fatigue this week and decreased appetite. Andrew lost about 5-6 pounds since last Wednesday. This is a warning shot, as weight loss can spiral quickly.
We are back today for cycle two. Andrew’s platelets dropped dramatically since last time. Due to being on a blood thinner and aspirin, the risk of bleeding if he gets three full-dose chemo drugs that further lower the platelets is too great. So he will only get two drugs today. Hopefully this helps with fatigue, and he will feel better especially during next week when there’s no treatment.
Mentally and emotionally, this has been a difficult week. Andrew is suffering with the trauma of working so hard to get on two trials, failing them quickly, and returning to a second-line chemo. There are unlikely to be additional novel treatments to try. We also expect that he’ll soon lose his hair and will no longer not look sick. We cannot know if this is the beginning of the end, but it’s certainly the end of the beginning—the end of feeling like maybe he can get years of good time on a trial pill or truly feel and look like himself.
Please reach out to him with encouragement and prayers.
Andrew started a new chemo regimen last Wednesday. It’s two weeks on, one week off. There are three drugs, and two can cause neuropathy. Andrew is worried about this, as he still has some numbness in his hands and feet from the last chemo. He ordered frozen mitts and footies to wear during parts of the infusion, which may curb some effects.
Last Friday evening, Andrew had sudden, 8/10 pain in his legs and ankles. It went away by Saturday morning but lasted hours and was excruciating. We’re anxious to set a new pain plan with palliative care for how to handle this if it happens again. He also experienced severe fatigue this week and decreased appetite. Andrew lost about 5-6 pounds since last Wednesday. This is a warning shot, as weight loss can spiral quickly.
We are back today for cycle two. Andrew’s platelets dropped dramatically since last time. Due to being on a blood thinner and aspirin, the risk of bleeding if he gets three full-dose chemo drugs that further lower the platelets is too great. So he will only get two drugs today. Hopefully this helps with fatigue, and he will feel better especially during next week when there’s no treatment.
Mentally and emotionally, this has been a difficult week. Andrew is suffering with the trauma of working so hard to get on two trials, failing them quickly, and returning to a second-line chemo. There are unlikely to be additional novel treatments to try. We also expect that he’ll soon lose his hair and will no longer not look sick. We cannot know if this is the beginning of the end, but it’s certainly the end of the beginning—the end of feeling like maybe he can get years of good time on a trial pill or truly feel and look like himself.
Please reach out to him with encouragement and prayers.
Elyse Steinhaus
11 months ago
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