See my profile for my full history. In brief, I was diagnosed with neuroendocrine cancer in January in my bladder and liver, responded well to carboplatin+etoposide, but the cancer came back in my liver by the end of September.
I just started my third cycle of cabazitaxel chemotherapy and have a scan scheduled for December 15th. The blood test results from Monday are not encouraging. Liver enzymes and LDH are all above normal and at record high levels for me. Chromogranin-A, which normally has not been elevated for me, has gone up approximately 20-fold in six weeks and is now in the 500s.
I've already reached out to Dr. Beltran at Dana Farber to discuss potential next steps should the upcoming scan be as bad as I fear it will be.
On a personal level, I am extremely distraught. My body has been beat up by 9 cycles of chemotherapy so far this year, not to mention atezolizumab which faield. I really was hoping for some form of remission to allow my body to recover and get healthy again before having to continue the fight. Actually, an indefinite state of "no evidence of disease" would have suited me just fine.
The only silver lining in all of this is my PSA has dropped from 0.16 to 0.06 in the past 6 weeks.
I usually try to be positive, but this possibility of having suffered through treatment for little or no benefit is new territory for me. I'm hoping somebody out there can commiserate with me, but fear that most people who have been in my situation have already passed on.
Sigh...
Have you discussed with an MO? Are some of these results perhaps to be expected as cancer is killed or body cells temporarily destroyed? I don't know much about chemo but since it kills off cancer cells as well as normal cells perhaps some of the metrics are temporary (I wouldn't be surprised if the liver stuff is temporary - fast-growing).
My LDH is a little high but my MO said not to worry about it. She thinks it's elevated due to exercise. Perhaps chemo also elevates it?
As I'm sure that you know, PSA isn't everything, but it's a very good marker. I'd try to look at the positive and wait to worry until you discuss everything with your MO (at least one MO).
I'm not there yet but I do feel for you and hope everything turns out okay.
I have two MOs: My local MO who is administering my treatments, and Dr. Beltran who is researching neuroendocrine prostate cancer at Dana Farber. I am in the process of discussing the results with them online, and expecting to set up an appointment with Dr. Beltran.
The problem with PSA is that NEPCa doesn't put out any. When a large NE tumor in my bladder blocked my kidney, my PSA was <0.01. That said, I do take some comfort in my dropping PSA because it means I'm only dealing with one flavor of prostate cancer that's out of control.
Thanks for the rational advice. It's very difficult for me to be rational in the days after a chemo infusion. It screws with my head and makes it difficult to process unexpected news.