kfrazier wrote:]I was originally diagnosed with Stage 1 and ended up with a liver met a year later...[then]another recurrence... had a reaction to the CAPOX today ... where I couldn't breath ...my joints are numb, I'm all butter fingers... and I have minor tremors
Thanks for your post. Sorry for your setbacks.
it was small 3.2cm on the left side right on the edge of the liver Onc. at the CCF was kind of shocked but it does happen time to time in Stage 1 patients. CEA was elevated at the time before discovery it was sitting at 24.9 right before surgery which was 33 days later it was at 33.4 once it was cut out CEA dropped to 1.
To me, you have probably experienced several system failures that are driven by a number of factors. Often designed for economy and convenience, only a slight part of it yours, rather than for reliability. Std medicine says you were just an unlucky stage 1 pt, too bad.
First is their likely failure to gather adequate baseline blood data. What anomalies were there that were either correctable, treatable and/or monitorable? Might not have seen anything but if you don't look, you won't see much. prior baseline suggestions
Second is the failure to identify chemisty(s) that might have alter the probability, speed and degree of recurrance or metastasis. Many possibilities, we've little information about your case (yet). Two tissue/blood targetable examples are vitamin D and aspirin, amongst many possibilities.
Third is the failure in monitoring design. Especially since you were stage 1, they will trot out claptrap about de minimis standard monitoring whereas my point of view is that this was a massive design failure at the individual level with about 3-5 doublings of CEA (post surgery #1, your CEA low was ___? e.g. some minimum CEA 0.8 to 3). No telling what other markers would have picked up.
12 glorious months went by cancer free
*symptom free*, met not detected yet (perhaps not monitored well enough)
he feels my body is doing a great job on its own by keeping it in the liver...
If it's just standard medical advice, your body could do (could have done) even better.
he gave me the choice as i fall into a medical grey area surgery or chemo but he really wanted me to pick chemo, gave me a bunch of science and generally speaking it seems promising to reduce recurrence. here's one of many studies https://pubmed.ncbi.nlm.nih.gov/33977607/
with 5yr OS as high as 85% of course this was in the adjuvant setting my doctor said NO to adjuvant.
he said we need to see your tumor biology and if we see a response then we will we know what my specific cancer looks like and how it reacts, if we go adjuvant we have no clue if it's even helping you and refuses to give chemo without a appreciable benefit.
There is often some tension between testing and treating, but a lot of it is an artifact of "standard" care and much more testing could be accomplished better and/or sooner.
The real problem to me is that they are just now starting to try to get some
biological information where substantially more testing should have been done in the first two years.
he said given the size and the tumor markers I would need to walk around with my eyes closed for a year maybe 2 before
You've had one fast CEA rise and one slow CEA rise, with lots of other missing data (nada here).
I would not be so complacent as spin the bottle. I would use a little time to make some efforts to really make the surgery count. Even less informed than we are now, we could do a lot in 6 weeks or several months (before surgery #2). You could do a lot in one day just on better blood testing for the first two blood test levels. (3 levels: "expanded baseline", liquid biopsy, and cytokine+immune function)
To me, the choice of level is a reflection of economic and willing effort available for incremental benefits.