Nov 04, 2004 - 2:00 pm
Since my mom was diagnosed in August I've been "hanging out on the fringes" of the discussion, gleaning much needed encouragement and hope from all of your courageous notes.
Here's the situation. I'm hoping for advice, support and whatever information you all can give me regarding the following:
Mom is 64 stage IV with mets to the liver and a bit in the lungs. Her CEA was 196 at initial diagnosis in early August. Needed to wait 3 weeks to see an onc at Sloan Kettering and her CEA shot up to 396.
She's on Folfox + Avastin every two weeks and has completed 4 treatments thus far with really no side effects except thinning hair and fatigue.
There was almost immediate improvement - especially liver function.
Here's the current deal: Mom was experiencing severe vomiting & diarrhea for 4 days after which time I brought her to Sloan Kettering. (don't know if it's coincidence but she started feeling crappy 2 days after her first shot of Neulasta - her onc doesn't think that this has anything to do with the diarrhea and vomiting). Her blood was very acidic (even after rehydration)her breathing was very labored (to expel the CO2)Potassium very low as well as phosphorus. The Dr.'s were kinda stumped. We almost lost her - was advised to make those "tough decisions" regarding intervention, dnr, etc.
The Good news is that she turned the corner- her counts are good now, but the diarrhea hasn't subsided. She's still going >10x in a 24 hr period. All tests for bugs were negative - she never had fever, but her white count is a bit elevated (doc thinks this is from the Neulasta, since elevating WBC count is the intent.)
Today they tested her CEA and remarkably it's down to 30 from 396 in August! Needless to say we were jumping for joy.
She's taking immodium, lomotil, and some foul tasting opium derrivitave for the diarrhea plus a shot of something I can't remember and a couple of antibiotics - flagil, metha something. Sorry for the vagueness, I've been sleeping at the hospital, and am a bit fatigued myself.
I'm very hopeful given the CEA news.
Anyone have thoughts/experience on the significant drop in CEA, and hints about what might be causing the diarrhea even still? Clearly I don't want her discharged until the diarrhea is under control. Thanks in advance for your responses. I look forward to more active participation in the group rather than just "eavsdropping".