I'd like to add more encouraging words from a G9 spouse, along the lines of Redwing's comment about
treatments evolving over time. Dave was diagnosed almost three years ago and here we are getting a kind of treatment which (whether or not it works in his case) I did not imagine would be available to patients outside of a clinical trial by now.
So for you nervous G6's and G7's reading this thread because you're worried about
the future, quit it! Things are going to be different for you by the time you need this stuff, if you ever do, which you probably won't!! (Unless society falls apart before then, of course.)
We're fresh back from a consult at Johns Hopkins where we had the benefit of a long talk with a doc immersed in the environment there. Here's a couple things he mentioned relevant to high risk/G9 guys.
First, he talked about
the relationship between highly disordered cancer cells and funky mutations (my word, not his). He pointed out that the cells being very disordered looking (i.e. G9) in general means that they have lots of mutations.
Maybe this is obvious but it wasn't to us. We're still getting used to the idea that the DNA in Dave's tumor cells is different than what he was born with - and has changed over time (and will continue to change).
The doc said that the more mutations there were in the cancer cells, the more pathways were available for potential treatment. In Dave's case, he has BRCA1/BRCA2 mutations in the cancer that were not there in his old genetic test (from blood). That means that if Keytruda doesn't work, PARP inhibitors likely would.
Another interesting thing the doc said was that there has been progress getting information about
the cancer from blood. Not from circulating tumor cells but from the cancer DNA floating around in the bloodstream. This seems very important, especially since the cancer itself is changing over time.
The doc was also mildly positive about
the idea of Bipolar Androgen Therapy, though he said he wouldn't do it for his patients outside a trial environment yet (and good luck finding a doctor who would). But that's another one that depends on the cancer's changing genetic makeup.
Dave is in the "lucky" 5% with MSI-H which gives him a shot with Keytruda. So while G9 guys progressing after everything has been tried maybe would want to get their cancer or mets biopsied, for others, it may not make sense.
But that brings up something really interesting: since the cancer is changing, WHEN you get tested for these mutations really matters. In other words maybe it actively doesn't make sense to get tested early. Because they might not be there yet.
Anyway, discuss. 😀
Dx 8/14, age 58, PSA 29, G9 (4+5), 11/12 cores, 3 bone mets
Lupron started 9/14, Xgeva 10/14
10/14 PSA 2.0, 12/14 PSA 1.1, stop Xgeva (jaw pain)
6/15 PSA 6.87, 9/15 0.8
9/15 jaw biopsy, osteonecrosis, 6 wk iv antibiotics
1/16 PSA 4.8, 3/16 2, 2/16 spot rad (hip pain)
10/16 on Xtandi, 12/16 IMRT (urinary symptoms)
5/17 PSA 8.6, 6/8 PSA 11, lymph nodes
6/8 biopsy MSI-H, 6/14 pembrolizumab
Post Edited (cspivak) : 6/22/2017 10:50:09 AM (GMT-6)