Jan 27, 2013 - 5:41 pm
Hello, everybody. I can't believe I actually got onto the site easily today. I am once again going to try to post a topic - so many times I lose them. I am still so upset about losing all my private messages, especially those from the ones we've lost since I've been coming to the site - Jennie, Lori Lepper (lepperl), etc. that I'll never get to communicate with again in this lifetime anyway.
My daughter had her first PET scan this past week. There is no prior PET to compare it with, so this is a baseline, sort of. She has an area of inflammation in the rectum (diversion proctitis) and it had an uptake of 3.5. She also had a flex sigmoidoscopy and this area is vastly improved from the last one a month ago with complete healing of an ulcer that was there before. Some of the lesions in her liver had uptake of 4.5. There was no CT done this time - the previous CT was about 2.5 months ago and the doctor then declared the cancer "stable." The doctor says this means there is still active disease present and has prescribed 3 more months of chemo (Folfiri + Erbitux) and then re-scan with PET and CT. Still calling the disease "stable." Does this make sense with "active disease" and uptake? The surgeon we saw in Nov. told us he believed her liver tumors had all calcified by the appearance on the CT.
Her CEA at diagnosis in Oct. 2011 was around 3,000 and rose to 6,800 within the couple weeks before she started treatment. It was at 17.1 on Nov. 11 when the doctor declared the cancer "stable" and then went to 10.4 three weeks later, then 10.2 three weeks later, then now 13.4 three weeks later. The doctor says she is not concerned about this fluctuation at this time and believes the cancer is still "stable."
Over the 16 months since diagnosis, she has had no new growth, no new tumors, no new lymph node involvement, etc. The liver tumors are still the ones that were there to begin with and that is the only cancer present. They are now going to review her case and decide what liver targeted therapy to use to try to finish it off. She is doing exceptionally well, has her health, energy, weight back. She was so sick in the beginning.
I you who are so good at all these details will help me understand what I've written above. Of course, I am still scared. In the meantime, she has had something exciting come up and will be going to NY next week with her husband to participate as a survivor model in the fashion week Plitzs charity gala for YES! Beat Liver Tumors.
My best wishes for all of you and I hope some of you will chime in with your thoughts. Thanks!