Hope doing as well as can be.
It’s been quite some time since I’ve posted anything, aside from commenting back here and there.
I guess my mental health is taking a bit of a battering this week so I find myself here seeking some guidance.
Essentially, my partner who was originally diagnosed October 2021 progressed to stage 4, very end of 2022 after successful high anterior resection. Following that news, he had successful ablation to 3 liver mets and a surgeon removed 1x para aortic node, after that, sadly more recurrence in the lungs and abdo nodes, for some background for you.
Since October 2023 he has been on folfiri + Avastin for the lung mets and lymph nodes, (chemo for life only approach, I get it) not sure exactly how many mets, let’s call it several, but on reported scans they target 3 to measure response.
I believe it’s maybe 4 in one lobe, and 2 in another and then some scattered lymphs (para aortic/illac). I understand the lymphs are the biggest issue here.
He’s in amazing health otherwise and still works pretty much full time in a physical role.
All his bloods are usually great other than some deranged liver enzymes which seem to be from the chemo.
Anyway, I digress.
Initial response the first few months to second line chemo = good, all shrinking, then stability and that has been the case pretty much the past 11/12 months.
Cea could argue has never been a good indicator because highest we know it’s ever been was 21, but high ca19.9 Both of these came down after just a month or two of the second line chemo commencing back last October.
Here’s what I’m struggling with specifically, lately, and this damn rollercoaster:
April (I think) CEA 3.6
May 28th - CT scan all stable, bar one 10m area of abnormal soft tissue superior to left renal vein
June 20th - PET to further investigate - suspicious area didn’t glow, noted as no definitive metabolically active nodes in the area. Everything else that we knew about prior was either low grade uptake, or moderate, as we expected. One node mentioned as unremarkable so may have resolved. All in all positive! Great! No huge or scary suprises
July 15th - another CT scan - all still stable and the 10mm area of soft tissue has now regressed… ok…
August CEA draw has increased, - 5.3.
Sept 25th - latest CT scan to date, all still exactly the same but the soft tissue area has grown again.
What the hell is it?
It’s one thing to be missed on PET, but was visible enough on CT, but then it regresses? Now it’s back?
It’s hard to believe it’s anything but cancer.
The team are being thorough and a liver & spleen MRI scheduled for tomorrow so I’m super nervous, expecting the worse
Just so confusing.
Last CEA draw taken October 7th as well has risen by 2, now at 7.3 so could argue it’s steadily increasing so that as a trend is not good.
Even if the new Met is slow growing how did it regress mid treatment and everything else the same?
I guess what I’m really seeking here is:
1. If only the new strange soft tissue area turns out to be something, would you advocate to get some form of intervention, maybe radiation to try and continue reaping benefits from the 2nd line chemo to get as much time out of it as possible, especially if everything else is stable?
I want to avoid at all costs going to a third line for now.
I know many won’t touch any disease whilst distant nodes are involved so maybe sadly and naively I’m seeking similar stories or stories where some creative surgeon or radiologist has gone in and done some extra work for more time??