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Re: My leptomeningeal journey
Agness, this reads like a gripping novel! Thank you for sharing. I look forward to reading all your posts.
I get brain mris quite frequently, every 6 weeks, yeah I'm not too crazy about the gallodinium overload, but it seems like the lesser of 2 evils. Anyways, I continually ask if there is evidence of LM. In one of my reports, the radiologist wrote "no evidence of leptomeningeal disease" and "brain stem spared". Each report is a written up a little differently. And in one he wrote, "clinical trial drugs not working."
So, I'm trying to read the reports as carefully as I can and look for any evidence of major change. Of course, under RECIST I have been classified as stable. Nope, not good enough so onto the next drug.
All my best, letranger
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