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by alfromspace 2304 days ago
I agree - ran into this problem with my dad. He had a rare cancer that quickly stopped responding to hormone therapy (the only kind of treatment known to work), and deteriorated rapidly. We called Sloan Kettering to see if there were any clinical trials he could enroll in, but since my dad had recently become bedridden, he wasn't eligible for anything. I don't know if there was anything else I could have done - it seems like the argument of "he's dying and wants to try anything that has the slightest chance of working" was completely expected and unconvincing to them.

Then at his normal oncologist, a brand-new drug was recommended that only worked on cancers caused by NTRK gene fusion - but my dad would have had to get a third biopsy to confirm that and get the prescription. Why didn't they get enough material the first or second time? Nobody could say. Every step of the treatment process was done piecemeal and ultimately my dad was in no condition to get yet another biopsy. I wish there was some process by which he could've just gotten the damn pills in the off chance there was a response.
2 comments
sjg007 2304 days ago
Was there not enough sample from the previous two biopsies to send out for genomic sequencing? ... also for anyone in an initial cancer diagnosis situation, ask your oncologist to both the genomic sequence the tumor and get its methylation profile, also RNA seq too. A lot of this is new technology but there are CLIA labs that will do it. You can also wait and request that your preserved samples be sent out for analysis. In many cases there should be enough tissue to send out.
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jcims 2304 days ago
Hey buddy, I'm sorry to hear about this now all-too-familiar sequence of events. There seems to be a very shallow horizon of planning for each individual case. This is probably a very human response to cases regularly spinning out of control in various ways, but still. If we could get an idea of a decision tree beyond the next blood test or biopsy it might help with planning.

>I don't know if there was anything else I could have done

This is a terrible feeling, I know it well.

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