Dear PhilipJax,
Your assumptions were all correct. One tumor left in the pancreas, no radiation ever, and no Folfirinox for 5 months before and after the nanoknife (two months before, three after). Interestingly I have had 3 months of no Folfirinox without any tumor growth before.I have had a total of 21 Folfirinox sessions over 2 years. I regularly took one to 3 month's "holiday" with no problems up until after the nanoknife procedure.
Initially (2016) I had 3 detectable metastases, the major one in the pancreas, one on the liver and one in the umbilical area. Folfirinox cleared those metastases up quickly and none have reappeared on any ct scan. The most recent CT scan showed a slight increase in the size of the pancreatic tumor (no numbers given, just a visual assessment unfortunately) and assumed spread to the local lymph glands near the pancreas due to increased size of those but there have not been any biopsies to prove this.
My oncologist, who is not surprisingly unfamiliar with nanoknife procedures and post nanoknife ct scans, said that it was possible the increase in size of these was due to some sort of inflammation following the nanoknife procedure. I sent the ct scan disk to Dr. Birth, but he did not offer much in the way of any opinion other than too bad, sorry, the procedure did not seem to have worked. However my CA 19-9 numbers have jumped to levels much higher than even the inital ones (they were never that high, the highest, most recent number was 441). And, the closure of the small bowel by something- a ct scan the week before showed that yes indeed the tumor was pressing on it- leads me to suspect that it is cancer, not inflammation. I am still astonished at the rapid growth if it is the cancer. One week from pressing on to complete closure of the bowel. But I would expect the relentless Folfirinox treatments to breed a super cancer, eventually. Looks like it might be here.
I did get some relief of my miserable gut symptoms after the most recent Folfirinox so I plan to continue with that until the next CT scan in a couple of months.
I was not able to sign up for the nanoknife trial which is ongoing in Toronto because, even though I only have one tumor, I did have 3 and am still considered metastatic. That's why I went to Germany. I had hopes that at the least, it would give me some "normal" time before the chemotherapy had to be restarted. I agree, it should have been done sooner but the recommendation from Germany was to wait 3 months in order to heal from the surgery, then reassess with a ct scan. Seems like the cancer had different ideas.
Pancreatic Tumors here in Canada are not checked for mutations (at least they weren't being tested in 2016). The protocol I received was what the PhilipJax decision guide would have recommended- metastatic, healthy, so Folfirinox. And this will be continued until there's unacceptable toxicity or tumor resistance.My bloodwork continues to be good, I do have neuropathy in my feet but that seems to be the only permanent effect of the Folfirinox. It does give me heart pains though, so I suspect there will eventually be damage although tests have found none to date.
There are a couple of clinical trials in Toronto where they are identifying the mutations and I will ask for a referal to those. Once I have that information, I can pursue other chemo options. I am not happy with the thought of just going with the next line of chemotherapy (gemcitibane and Abraxane) without knowing if there will be any point to that. The PAXG regimen sounds interesting.
Thanks again. Your posts are invaluable.