Postby jsbsf » Sun Aug 29, 2021 8:24 pm
Hi all, I wanted to check in. Sorry, Peter (prs) for not responding sooner. I don’t get notifications and don’t check in as often.
DH just crossed the 2 year mark from the time of diagnosis. His last treatment, 1 week course of radiation, was in late July 2020 - more than a year ago. He was getting quarterly check ups, that have always been very good. His most recent CT scan was on 6/14, and his last blood tests were on 5/3.
His blood test results were all within normal range. One aberration was in a test in 11/2020 where his ALT spiked to 149 U/L, and AST was 84 U/L. Around this time he had some discomfort and abdominal swelling. So he began taking an entecavir prescription which he had been given several months earlier, but had never taken. Follow up blood tests were on 12/30 and 5/3, where both of these numbers fell back into range: ALT=15 U/L AST=19 U/L. he actually felt much better only a day or 2 after starting the entecavir.
He gradually reduced the entecavir from daily to every other day to every 3 days until around May or June, when he stopped taking it altogether.
The oncologist feels like he’s cured. He recommended to get his checkups every 6 months. DH likes that, so I’m not going to argue. He doesn’t like the scanxiety. The oncologist really thinks he’s home free and that the scans are unnecessary, I guess they emit some amount of radiation? Probably not a great reason to forego checkups, but we are both on board with the oncologist’s decision since he’s been pretty good to him so far.
I asked him a couple days ago how he feels. As far as I am aware, he’s never had an accident. He says he definitely isn’t completely back to normal but seems to feel pretty close, and has noticed gradual improvement. So, it’s really good to know it can still get better.
One thing I want to mention. It’s a little somber, but it’s not something we read, or were aware of early on, and that’s probably a good thing . On 9/5/2019, the prognosis was clear: he wasn’t expected to survive and his care was expected to be palliative just to improve what little time he had left. I’m really glad we didn’t know that because I feel like it would have made us less hopeful. But here we both are 2 years later and aside from the emotional scars, it’s really almost like he was never sick. I couldn’t be happier. I’m hoping that if others are given a poor prognosis, this information might help lift their spirits some.
As far as supplements, he still gets his Turkey tail, MCP, tumeric, and aspirin. Just not as regularly. We’ll most likely continue that regimen for at least another year.
DH 61
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
9/16 MSS. MRI: 2 lvr mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm, pri tmr stable.
CEA: 10/13,12.5;10/27-12/8 btw 4.7 & 3.1
11/5 both lvr mets ~ 2/3 smaller.
12/17 PET: significant improv.
2020
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12
7/23-29 EBRT
10/2/2020 NED/W&W
4/2022 EUS-FNA,MRI: recur.;
5/2022:CT scan no mets. APR.
7-12/2023 Xeloda
4/2023 CT/MRI NED