Mar 17, 2013 - 9:14 pm
I am near panic and just need some input from you guys. My daughter is fine, off to a St. Patrick's dinner with friends. Feels great. To recap: Diagnosed at age 32 stage IV in Aug. 2011, 6 weeks after the birth of her first child. Had the cancer and symptoms during her pregnancy. Had Folfox for about 4 months and it "stopped working." CEA stopped dropping. Off chemo for LAR, then resumed chemo, this time with Folfiri. Theraspheres to liver, first lobe May 2012, other lobe June 2012. August - CEA rising. Dr. stopped treatment with no other plan in place. Gave up on her. We were scrambling - Suzanne Lindley of Beat Liver Tumors and others telling us that CEA can go up after Theraspheres, don't let Dr. stop treatment. But he did anyway.
We went elsewhere and got her back on treatment Folfiri/Erbitux now - and come to find out, CEA was going back down after all. Was at 885 to start at new cancer center, Aug. 2012. Came steadily down, was around 29 in late October, scan then showed "stable." No growth, no spread. CEA continued to drop, got as low as 10.2, stayed there about a month, Dr. continued Folfiri with Erbitux. PET scan 1/25/13 showed uptake of 4 in couple areas in liver, 3.5 at site of colon anastomosis (where it was reconnected after tumor cut out). Also had colonoscopy with biopsy of inflamed area of colon, showed "inflammation." "Diversion proctitis." Colon actually looked better than it had a month before, and ulcer was healed.
Had never had a PET scan before, this was first. So doctor wanted to continue for 6 more treatments and re-scan. Well, CEA has gone up some, was 13.4 at time of PET scan 1/22/13, then 15.8 on 2/11, then 17.6 on 2/25, then 24.1 on 3/11. Doctor saying not enough of a spike to be concerned yet (because her tumor was high CEA producer), and she had a badly infected toe from the Erbitux. Treatment continued with plans unchanged. Another scan scheduled end of April. Then plans for possibe Cyberknife/Theraspheres if still needed. Dr. said she did not want to change course at this point, so close to scan, wants to know when she has scan if treatment helped, etc. w/o adding something else to the mix.
So... my daughter and her husband are comfortable with that. I am beside myself with panic, could jump out of my skin. Could just scream and scream. She still feels great. I know that means nothing. I am worried treatment has stopped working. AST, ALT and bilirubin are at low end of normal. Alk Phos high, 300. Has been high from the start. I just want them to go ahead and do the &%#$ scan. They will not scan until at least 3 wks after last chemo. She is to have 2 more chemos before scan, next one 3/25.
Do I have good cause to panic or should I chill out and trust doctor? Don't want to scare my daughter.