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.