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Sven7 | 10 years ago

If you know the experimental drug\treatment you want to try check overseas. Don't wait for local (I'm assuming) docs to give you the info. Contact centers with a known rep. Good luck!

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tominous|10 years ago

Thanks, I certainly have my eyes peeled for news about metastatic ACUP (or any related diagnoses) but as far as I'm aware there's no silver bullet anywhere yet.

Right now the strategy is to kick the can down the road until there is a solution: traditional chemo, then the blunt immunotherapy of ipilimumab + nivolumab/pembrolizumab.

Also (with oncologist's knowledge) adding in very speculative but reasonably safe extras like a COX-2 inhibitor, anti-histamine, and melatonin. (Certainly not the well-targeted approach I talk about in my other comment, unfortunately!)