Thanks for the update, nifty624. I share the same sentiments. DH is about a year behind you. This was the most helpful thread for me.
Are there any other stage IV out there on W&W? DH seems to still be going strong. It’s not quite 2 years, but getting close. His last treatment was 7/29/2000, and they weren’t even sure at that point if the primary tumor had any cancer. It seemed totally destroyed, and felt the radiation would certainly eliminate it.
He officially opted for W&W in October 2020, so we will consider that as the 2 year mark although he was really NED for about 3 months before that.
His 2 year disability status qualified him for Medicare on 3/1/2022. Yay!
He just had his first colonoscopy 3/25/2022 since he was diagnosed with one on 8/23/2019, and it was good. He’ll have a follow up MRI in the upcoming days since it’s been awhile.
He continues taking the same supplements (in smaller amounts) he took pre-NED. IP6/inositol, Turkey tail (psk), MCP, occasional cimetidine (Tagamet), and berberine, quercetin, turmeric (curcumin). We don’t know how much this has helped, but feel it made at least some difference in getting us to this point.
His W&W schedule hasn’t been consistent. He was originally every 3 months, then got switched to 6 months, but only once. Then he switched doctors which made his recent check up happen 2 months earlier (so this week was after 4 months). His new doctor wants it to be back to every 3 months.
I agree with others who have recommended to be monitored closely in the beginning. We shouldn’t be too confident so soon since a substantial percentage of recurrences happen within the first 2 years.
2019 4A t3 n2 m1a
8/23 C-scopy, 5+cm mass. CEA:4.1
8/26 CT ~1cm lvr met?
9/6 PET: lvr spot
9/16 MSS. MRI: 2 live mets: 2.7 & 7mm
9/30 Start FOLFOX 1-6
10/4 Lg lvr met ~3.7cm (raised concern), 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: sm lvr met gone, remaining tmrs @10% of orig sz & actvty
MWA 2/5, Lap resection 2/11
CEA: 3/1-5/31 btw 2.1&2.9
3/2 start FOLFOX 7-12