The report from my last scans October 28 read “complete response” and during my November appointment my Hong Kong oncologist confirmed that meant “no evidence of disease.” Nevertheless, I still …
Tag:
lorlatinib
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It’s not so good, guys. Two consecutive months of normal tumor markers is amazing and more than I could hope for but the cost has been high – and not …
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Living with Cancer
Toxicity and Cancer Treatment: What I just learned from a burp
by Maggie Jonesby Maggie JonesEvery morning I take the lorlatinib that is keeping my cancer from growing. It has a slew of side effects including raging cholesterol so I also take rosuvastatin (a hydrophilic …
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Five weeks in and the side effects I’m experiencing from lorlatinib are so much better than those I experienced on crizotinib: Tiny negative impact to my memory and attention. Continued …
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We’re on vacation in Guilin, China, but I just got a call from my oncologist that they finally have my compassionate use lorlatinib! Actually, they called to tell me that …
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Conventional TreatmentMedical Updates
Being Your Own Advocate & Questioning the Details
by Maggie Jonesby Maggie JonesThis one is good. My lorlatinib instructions are to take 4 25mg tablets once per day. I thought that was weird since I know they make a 100mg tablet. What’s …
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Today is my seventh day taking lorlatinib and my fourth day back at work. I could have returned to work earlier but Good Friday and Easter Monday are public holidays …
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Conventional TreatmentMedical Updates
TKI Transition: Crizotinib to Lorlatinib
by Maggie Jonesby Maggie JonesI spent three days on the road with less than a 12-hour turnaround in Austin and arrived home last night with a month’s worth of lorlatinib. Victory! I took my …
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Medical Updates
An Increased Sense of Urgency and Adjustment to the Plan
by Maggie Jonesby Maggie JonesThe dramatic increase in my blood tumor markers this month was not a surprise but was a bit concerning. Combined with the massive increase in size of my brain tumors …
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Medical Updates
Lorlatinib Update: Lots of Activity, No Real Progress
by Maggie Jonesby Maggie JonesA quick update on where I am on securing lorlatinib. I have a couple of parallel streams going but neither seems particularly promising. Just a reminder that I don’t qualify …
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The PET-CT results weren’t nearly as bad as expected given the dramatic rise in tumor markers in my last blood test. Overall, it looks fairly steady since the Jan 30 …
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Conventional TreatmentMedical Updates
Post-Xalkori Resistance Updates
by Maggie Jonesby Maggie JonesHere’s where I am in the mad dash to find the next treatment for my quickly growing brain tumors: Plan A: Lorlatinib Trial in Boston The advantage here is free …
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