It's been 860 days since my original diagnosis. I'm responding well to folfiri chemo after having a recurrence following platinum chemo and not responding to cabazitaxel. I've lived almost 14 months since my neuroendocrine diagnosis. I'm not aware of any other neuroendocrine patients who are doing well on a third line treatment, though I'm sure they exist. I feel the need to shout my story from the rooftops as a way of saying "Never give up hope!"
I also believe that my cancer's genetics makes it especially susceptible to chemotherapy that attacks DNA. For more details, see my rather lengthy and meandering blog post:
Excellent read Professor. You had to have success because a new season of Marvelous Mrs. Maisel was ordered. Can't miss that! Wishing you continued success and an early Spring.
Thanks. I'm a little surprised nobody has pointed out any errors. This post went to the extreme edges of my understanding, but it seems I'm wading into areas that science is only beginning to understand.
Hi Tom, I always read your posts and you’re an inspiration to me and I’m sure many more of us. I found out about a month ago that I have at least a couple of swollen lymph nodes and my MO is thinking that I may have neuroendocrine dedifferentiation as she calls it. I’m 4 months into Xofigo right now with two to go and she wants to get more scans after Xofigo and then a biopsy if they are still swollen. Did you find out about your NE cancer in a similar way? Was your first treatment Taxotere with Carboplatin? By the way the swollen lymph nodes make me feel sick and the possibility of NE is pretty tough news. Thanks.
Hello, I think dedifferentiation means the NE may be taking over as the main cancer type instead of adenocarcinoma. My MO is not 100% sure about the NE in my lymph nodes yet since I haven’t been biopsied.
Thanks for the kind words! I had painful urination for several months prior to diagnosis. My urologist did a cystoscopy and all he found was "friable tissue" in my prostate, and my doctors seemed content to call that the source of the pain and said it was nothing to worry about.
Less than a week later I had severe abdominal pain and went to the ER where they did a CT scan and found a large tumor in the bladder that had just been scoped. To be fair, the tumor was in the wall of the bladder, and not growing into the bladder cavity. That was shock #1. After meeting with the oncologist a biopsy was scheduled for the bladder.
Shock #2: On the day of the biopsy, I was told the biopsy would be of my liver. The integrative radiologist had noticed some lesions there that my oncologist missed. The biopsy came back as neuroendocrine cancer of unknown origin. A PET scan "confirmed" that it originated in the prostate. However, it's worth mentioning that three different oncologists have given me three different origin stories: 1) NEPCa that developed alongside my normal prostate cancer, not from it, 2) Treatment emergent NEPCa, and 3) neuroendocrine bladder cancer (I have also had bladder cancer).
Now with my very verbose origin story out of the way, here's the IMPORTANT PART: Neuroendocrine cancer is pretty much the same regardless of where it originates. Small cell lung cancer is basically neuroendocrine cancer of the lung, and has probably had the most research. My treatment was based on small cell lung cancer, and consisted of Carboplatin+Etoposide+Atezolizumab. This gave a complete response in my liver, meaning no lesions were visible in a CT scan in June of last year. However it didn't last, as a follow-up scan in September showed lesions in my liver again.
In my experience, taxanes (docetaxel and cabazitaxel) don't work against NEPCa, though the highly respected Dr. Beltran says they will work if the cancer originated in the prostate. So either a) she was wrong in my case, or b) I really do have neuroendocrine bladder cancer. Platinum+Taxane is commonly used as a means to treat a mixed cancer. If your PSA is low and you're only trying to attack NEPCa in the lymph nodes, you probably don't need the taxane.
NEPCa is very scary, but because of its similarity to small cell lung cancer there are a LOT of treatments that can potentially be used off-label. I'm currently having success with folfiri, an off-label colon cancer chemotherapy suggested by my local oncologist which Dr. Beltran agreed was a good option for me. A year ago I didn't know there were options beyond platinum chemotherapy.
It sounds to me that if your NE was emergent from PC treatment that it had already gone beyond your lymph nodes possibly. I have to admit that NE is some hard news if that’s what I’m facing. I don’t have the confirmation yet, but just having my MO being concerned that it may be emerging from my treatment is tough. Anyway I’ll keep pushing on and try to stay positive like you have done. Thanks for taking time to explain your situation.
My cancer is weird in several ways. Never had much lymph node involvement, and my prostate is normal sized and if I recall correctly unremarkable in my last CT scan.
That’s one thing I’m beginning to understand, that cancer can manifest is so many different ways. I’m trying to keep hope that I don’t have NE, but I also have to be realistic. It’s tough.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Chemo treatment/What happens after chemo? 
Chemo failure. What next?
Genetic counseling & testing
Arbireterone and/or chemo 
