Brearmstrong wrote:... 2 nodes with the larger one at 1.3cm. At the tumor board, more genetic testing was ordered to see if I have Braf mutation or others that might benefit from immunotheraphy. MSK got back to me and wants to see what my scans look like in 3 months and I started on Folfiri w/ Avastin last week. ....not against trying removed the lymph nodes.
We've had good luck with frequent, stronger blood work, and later, direct kill testing of the surgically removed mets.
I know this doesn't mean cure but can't long term remission even be a possibility?
Direct surgical removal with continuous chemistry and immune support/attack has worked best for us. 6.5+ years since removal of large, conglomerated para aortic cluster with extensions, and 7.7 years since dx.
.They are also not against trying radiation in the future
Although we spent some time getting consults on this, we passed on RT. Good thing because, the physical target was too big to be effective, even at max rad.
Again, I hope they aren't just saying this as they know it will have spread by three months and are just giving me something to hang on to. I need something to hand on to though so I'll take it! I have yet to find any success stories of these para aortic node involvement
We probably have one of the more successful p-LN examples - daily immunochemo with mild drugs, strong supplements and direct surgery, including 3 p-LN circa 2 cm each with many smaller ones. We did not wait on them to max the attack, we continuously built up the immunochemo attack ourselves.
It's a bizarre situation. My wife's cancer cells virtually lapped up chemo in the lab tests, up to 5FU-oxi-iri-gemcitabine (this mixture had some effect) but died on 5FU and (selected, tested) strong vitamins. Oncologists laugh, cower, insult on any such thought, when the truth is they use damaging, hopefully sublethal mixtures instead of things that literally make you stronger (denser bones, stronger collagen, good organ function) when chosen carefully and intelligently at high dosages, still far below the "maximum tolerable" (truly stupendous numbers vs maximum tolerable dosing in oncology).
Rp1954- your posts are always great to read. What daily chemo is your wife currently on?
Thanks, her core at this time is daily UFT - LV (instead of xeloda), celecoxib, IV vitamin C, vitamin D3/K2, along with an important laundry list where compliance varies greatly with her motivation level. She prefers to skate on thin ice the longest possible; she always counts on being pulled out when she falls in... ( I got crowns on my rear teeth this year)
How is she doing?
um, fat and sassy with pretty good bloodwork but I hold my breath on this thinner and thinner ice business because it's not the good panels that do you in.
Right now CEA, LDH and AFP are suppressed into mid normal ranges; normal WBC, RBC, platelets; CA19-9 is perhaps stable in the 70s (high), this elevation seems to reflect less IV vitamin C, cimetidine, supplements, with much more body mass for a static 5FU dose.
