May 09, 2013 - 1:11 am
Hi, everybody. I have been so busy and such a basket case I can't even think but I wanted to give you an update on my daughter. Recap: CEA >2,800 at diagnosis early Oct. 2011 - very, very sick, then up to >6,800 by the time she began treatment several weeks later - all of it in my profile. Liver with "numerous" inoperable mets at diagnosis and a 6 week old baby, her first. Began Folfox till it quit working, had colon resection, off chemo for that - CEA back up to 3,000, then Folfiri with Avastin, which lead to life-threatening rectal bleeds, Theraspheres in May and June 2012, then Folfiri stopped in August - onc felt it quit working, had no backup plan. Changed oncologists in a panic.
We went to CTCA, got her right in and continued Folfiri with Erbitux added. Her overall health started improving in leaps and bounds. CEA eventually dropped to 10.2 in January, then started creeping back up. The creeping seemed to be slowing last several checks (CEA every 2 wks) until she skipped 3 weeks for PET scan - CEA jumped to 47.2 on 4/29/13. Back in January 20134 she had her first PET/CT. (Prior oncologist said PET was not necessary, she was stage IV and PET only done for staging, and never did one.) Areas in liver with uptake of 4 at highest, area at anastamosis site where colon resected 3.5, thought to be inflammation.
Oncologist did not want to change treatment, wanted to continue 6 rounds then repeat PET/CT. So scan repeated May 1. They did not do a CT scan between PET scans because they had already done one in October and it appeared the same as the one done at diagnosis at year earlier - liver tumors still there, still same size, so she wanted the PET because it shows activity. Well... this time the PET shows increased activity - SUV up to 8 in colon at original site (recurrence), and two liver tumors SUV of 7-9, one liver tumor 15. More activity. "Progression" in the liver tumors. Same size, more active, but active areas small.
The recent scan results were a mixed bag. The "good news" in all this is that she is still feeling healthy and energetic, still eating well, active, liver function great, etc. The cancer has never spread beyond the tumors that were there at diagnosis, and there are now many FEWER tumors than then. The "dead" ones appear to have calcified.
So this is the new plan. She started back on Folfox last week. Her oncologist says that she has been off of it long enough that it might work again. We are awaiting insurance approval for Cyberknife for the 3 remaining active liver tumors. As soon as they get that we will go for insertion of the gold fiducial markers for Cyberknife. She is seeing a surgeon about colon resection and POSSIBLE LIVER RESECTION!
This is the exciting news - now we are at a point where liver resection is being discussed as a possibility. We were told this would NEVER happen. Some of you might remember that we were given no hope at all, considering the magnitude of her disease.
I am upset at the bad news but feel so much more confidence about plans being in place to eradicate the cancer, actually knowing for the first time exactly where we stand. I am taking it as a good sign that this cancer has never spread. We are going to remain hopeful. But I have to tell you, I have my moments.
All of you are in my thoughts. I try to check in when I can - I want to know you are all still here and doing ok - but I have needed a break from cancer stuff so that I can deal in my head with this current situation. My daughter is the one who is sick, but she has no fear, just confidence, just as she's had from the start.
It's more than I can take, sometimes. Wish I had her strength.