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Katrinka, I just reread your initial post, and I am wondering that with Stage 4 at diagnosis and the area to which it spread if the oncologist, though his manner was not very positive, did not have the right approach. Folforinox is the strongest chemo for PC that I have seen on the board. Some facts I know from our friend and from reading this board:
a- If as he was at Stage 4, put on Folfironox which is the strongest chemo and when you chose to stop, the PC has been stable in all places, then continued close monitoring makes sense so as to avoid undue stress to your body. His onc. does a scan every 3 months and blood work every 6 weeks, which I assume would indicate some change.
b- His oncologist did tell him clearly that the JHH immunotherapy trials that he is hoping to get into, must show a secondary metastasis or growth spurt.
c- It makes perfect sense to ask what would be the recommended chemo if you did not choose the original full Folfironox. There are several individuals with Stage 4 who could share their options with you.
d- He has already had radiation at some point and as he has it in both lungs, it is not a suitable area for him. **This is one question you can ask or do research on in terms of where the PC has spread, to. However, once a spread, usually it is chemo that is the systemic treatment.
I am the one who mentioned seeing other specialists if an when things come up because you do not want to just fool around with something that might work. Our friend has a gastro for stomach/digestive issues and a doctor to handle his diabetes (not sure what this is called) as well as his oncologist.
All I can say in general is that he has kept up a positive attitude during the last 4.5 years in the face of other life issues which have broken many a healthy person. PC has been the least of life issues he has had to confront with grace and faith in God. The other key thing for him has been his continued daily exercising which no longer is running, but walking and weight lifting. Being at a comprehnsive teaching hospital is probably key to having all services in one location.
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