I posted awhile back that my PCa had progressed to high grade neuroendocrine carcinoma/small cell. I was treated with 4 rounds of atezolizumab/carboplatin/etoposide (chemotherapy and immunotherapy). A pet/CT scan shows it was effective, and I fared better than I expected going in, but definitely have fatigue and weakness. My next step- and therefore my question- is atezolizumab (immunotherapy) by itself. Has anyone experienced this therapy sequence? I'm hoping to shake the fatigue since the chemo has concluded. Any experience of side effects? Thanks in advance.
Charlie
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CharlieBC
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Glad to hear that this regimen has helped your neuroendocrine disease. I also have 30% NESC along w regular PCa. I have been on Carboplatin+Cabazi chemo regimen lately.
What PET/CT scan you are using to get a sense of reduction in NESC part of the disease? This has been a hard challenge for me. My disease is all in the bones and bone marrow, no soft tissue. I am tracking Chromogranin-A.
These are the notes from my ONC: "PROCEDURE: 12 mCi of F-18 FDG was injected in a port, routine PET and CT images of the body from skull base to the mid thighs were acquired 68 minutes after radiotracer injection. Axial, sagittal, coronal, fused, and maximum intensity projection images were made available. The noncontrast CT images were used for attenuation correction and anatomic correlation; they are not intended as a diagnostic examination apart from the PET." The previous July I had a bone density scan- with no flags. Good luck, Charlie
I to have Nepc in addition to adeno. Yes, I have experience with immunotherapy. I did a 5 month routine of carbo/cabaz along with nivi and ipi in a phase 1 Champ clinical trial at Duke. I have continued after the 5 months of chemo with the 2 immuno drugs Nivi and Ipi which I believe are generic forms of opdivo and yervoy. Some side effects from the chemo but I have not experienced any side effects from the immuno drugs to my knowledge. I have tolerated all the treatments well. I continue to have treatments every 3 weeks. I believe my tolerance of the immune drugs has moved the trial into phase 2? Hope this helps.
I too, am treated at Kaiser In Denver where the Colorado Avalanche and the Denver U Pioneers are champions. 6 years ago I developed large pleural lesions in my left lung and a huge pleural effusion. Biopsies showed NEPC. I was treated with Etoposide and Carboplatin. The effusion stopped, had the chest tube removed and the lesions were smaller. Over the ensuing 5 years my PSA began to rise again and FDG18 PET scans showed growing lesions in nodes along my aorta and in my mediastinum. Biopsy showed adenocarcinoma so it is clear that I have a mixed tumor. Last year Docetaxol course was awful and I needed it to qualify for Pluvicto. Now have skeletal lesions. Am trying to decide at 82 whether I can handle any more major side effects. May be ready to just quit after 27 years of treatment.
My wife passed on with dementia last month and I was full time caregiver. It really gives me pause about any more treatment. On the other hand I have a great family that cares and I enjoy being with them whenever we gather.
Doc, I'm sorry for the loss of your wife, but it is good you have family this time of year. Thank you for your experience with the treatments. I'll see how the immunotherapy goes. Wishing you success, with minimal side effects. Charlie
You deserve a medal...........for the caring of your dear wife. Dementia is a disease that takes up all of you waking hours in monitoring and servicing the patient. As far as having pause about any more treatment for yourself.....stick it out......you never know if that cure is just around the corner. You're fortunate to have a great family that cares and that you enjoy being with. So keep posting here because we need members like you. God Bless you and stay well.
Charlie, Glad you are being treated and sorry you Mr cancer has progressed. My husband is waiting to find out if his cancer has progressed to neuro endocrine. Might I ask what your path was to know you had neuro endocrine? Wishing you well.
Ojsm, I was treating my MRPc for years with ADT (Lupron, Zytiga, most recently Xtandi). I found a lump under my jaw, which led to an ultrasound. That revealed a mass, that led to a biopsy, which found the cancer. A PET/CT scan revealed the extent of the cancer (Also in my T1 spine). It is important to note that the NEPC never showed an increase of my PSA. The PSA can't be the sole marker for this transition.
my husband had 2 masses in his spleen and pet couldn’t be sure so spleen removed and waiting for pathology but psa is undetectable still and if it’s cancer in the spleen then it’s most likely neuroendocrine. Scared
Ojsm, When it was confirmed that it was NEPC, I begrudgingly began chemotherapy (carboplatin, etoposide and atezolizumab [immunotherapy]. It turned out good so far. I just now finished the chemo/ starting immuno. I would expect his MO would do the same IF our experiences are the same. There are some therapies available to help.
I had a rib met biopsied prior to starting Taxotere, and it came back adenocarcinoma even though all my mets are PSMA negative & FDG positive. I believe I'm heading down the slippery slope into neuroendocrine as well.
Neither of my MO's are monitoring for those markers specifically. Based upon my research, the FDG+ nature of my mets leads me to believe that there's more to my cancer than is currently showing. I have another FDG coming up next month which should give me some more clarification.
Hi Charlie, my dad (age: 53) is in the same boat as you. He fared well with that chemo regimen but was told he needed a break so he took 2 months to get his energy back and is receiving a scan as we speak to check on progression. If it hasn’t spread more in his liver, the doctor at Duke wants him to take another 2 months to keep getting stronger and then start either atezolizumab or enroll in the doc’s clinical trial. I will keep you updated!
Thank you for that. The thought of taking a break crossed my mind. But we hesitate to tell the Doctors "This is what we are going to do". I may skip the first atezo infusion, and start in a few more weeks.
I concluded the chemotherapy early December and continued atezoluzimab (immunotherapy) monotherapy. I am gaining strength and less fatigue, but am still in the low red blood cells/Hct/Hgb category. Today was a bloodwork day for next Tuesday- another atezo infusion. The results were not as I expected. My liver enzymes are elevated; and my PSA wanted to make sure that I still was aware that I have prostate cancer, so it went up from .28 to .68. I am going to skip this Tuesday's atezo infusion to see if it helps the liver numbers. But, I found an interesting article regarding atezoluzimab and liver damage. The link follows:
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Xtandi alongside chemo for neuroendocrine cancer? 
Neuroendocrine and PSA 
Do I have neuroendocrine PC?
Would Carboplatin help with liver mets that are not neuroendocrine?
