Diagnosed with metastatic prostate cancer at age 43. Went through chemotherapy with docetaxel for 6 cycles, radiation of mets to my cervical vertebrae, ADT with Lupron of course and even a radical prostatectomy (strange this was even offered and done with my stage). I started with a PSA of 54 and joined the zero PSA club in Jan 2018. Went off all treatments and travelled the world after this. Even climbed Mount Kilimanjaro that year. PSA became detectable again in June 2018 and positive scans in Dec 2018. Restarted Lupron and Zytiga Jan 2019. It was effective for 1 year with no progression of disease but Jan 2020 my PSA started rising. We stopped the Zytiga and changed to Nubeqa but my PSA keeps rising. I get my care at the Mayo Clinic and was told yesterday that the standard of care is chemotherapy again. I just can go through that plus it does not work for that long.
Anybody doing any clinical trials with immunotherapy or high dose testosterone pulse therapy that Hopkins is studying? Also heard that 2 new drugs that repair DNA were release 2 weeks ago. Just curious what other castration resistant prostate cancer warriors out there are doing?
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Cleodman
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Have you had testing to see if you have a treatable mutation? The newly approved PARP inhibitors you mentioned work with BRCA and ATM mutations.
Second-line Cabazitaxel chemotherapy has better side effects than Docetaxel for many patients so that could be an option for you if you do want to try chemotherapy. The median radiographic progression-free survival in the recent CARD trial with Cabazitaxel was 8 months.
I'm also castrate resistant, currently on Zytiga. When that becomes ineffective, I plan to do the testing and either go on a PARP inhibitor if I have a treatable mutation, or back to chemotherapy (Cabazitaxel).
Hi Cleodman. I was diagnosed a couple years back at 49 with PSA 68 and GS 9. I started the Cosmic 021 trial on Thursday. It’s a combo of cabozantinib and atezolizumab. Obviously too soon to report on results but no side effects yet. I treat at UCSD (Moores).
I have a good friend who was a fellow medical student and oncologist in CA. I hope he can find me a trial also. The ones in AZ do not interest me as they are not for my situation.
Congratulations on Kilimanjaro! The chemo may be different - they often use cabazitaxel (Jevtana) the second time. You can try BAT at JH, if you qualify for their trial. Sometimes, it extends time to treatment failure, sometimes it seems to accelerate progression - they are trying to figure out which patients will do which. The PARP inhibitors recently approved don't work very well (and are very toxic) unless you have certain mutations in your BRCA genes. They can check for that. They can also check for certain rare mutations (MSI-Hi/dMMR) that increase susceptibility to Keytruda. It sounds like you haven't yet had Xofigo or Provenge. The early trials of the combination suggest that the combination is synergistic. Brand new data suggest that reduced dosage chemo may be combined with Xofigo:
A problem with Mayo is that they push their C-11 Choline PET scans because they sank a lot of money into it. That scan is pretty much outmoded. If you can afford $2977, I suggest you get the Ga-68-PSMA-11 PET/CT at UCLA, which is much more sensitive. If you can spend a second day there, it's probably a good idea to get an FDG PET/CT as well. If your metastases are PSMA-avid and homogeneous, you may consider one of the PSMA-targeted therapies.
If any of your metastases are large enough and accessible, you may want to biopsy one and get a good pathologist to look at it under a microscope and with certain (IHC) stains. I suggest Dr Wang's lab at Duke. Sometimes, in heavily pretreated men like yourself, certain morphological and proteomic changes can occur that he can check for, including DLL3 and PSMA expression.
Thanks for the info. Yes I hear you about the Mayo. Good care with standard of care stuff but now I am wanting to try different therapies that they don’t offer. I have no mutations that are treatable per my initial genetic testing.
I agree, prostate oncology is not one of Mayo's strengths. They are good at urology. Do you live in Minnesota? You may want to switch to Charles Ryan at the University of Minnesota.
Histology and IHC are often more useful than genomics.
Like Cleodman, I have a cervical met. Mine is on C6 & C7. I was told that it's not straightforward and perhaps risky to biopsy. Questions: Does that sound credible? Are all cervical mets difficult to biopsy, or does that depend on the specific location?
You never mentioned xtandi or any other ADT drugs. So if you have not been treated any other ADT drugs except Lupron and zytiga you are not castrate resistant.
Lupron, Zytiga and Nubeqa. Nubeqa is very similar to Xtandi but does not have seizures as a side effect so we substituted it because I have epilepsy. Well the Mayo Clinic oncology disagrees with you as they labeled me castration resistant yesterday.
While Dose worked, it had rough side-effects..Caba (Jevtana) worked better with almost no side-effects.. TA gave you some good information but few of us can travel all over the country and the world chasing treatments that are STILL palliative in nature and not covered by insurance...If there was a possible CURE at the end of the rainbow, that would be a different story...
Good question.
When Zytiga becomes ineffective (as determined by radiographic progression), then I'll be looking to see where there is progression at that point. Getting a tissue sample from new mets at that point will give me the latest and greatest somatic cancer mutations along with checking for the development of NEPC cells.
Right now I have a working treatment with an undetectable PSA, no significant pain and overall I feel good. I think it makes sense to do that as close to the treatment change as possible. Especially considering the reason why Zytiga becomes ineffective could be a mutation.
I have been an advocate for biopsy and testing on this forum, especially in cases where guys are "blowing through" treatments in significantly less time than typical. I think it makes sense to see if there is a reason that can be found and the treatment adjusted based on what is found.
A couple comments: If you are referring to the blood tests such Chromogranin A and NSE, they are not specific enough to diagnose Neuroendocrine Differentiaton in prostate cancer. They are useful to support the diagnosis and also as tumor markers if you do end up having NEPC since PSA will be of less or no value.
Based on what I've read, you should not use an AR-V7 positive diagnosis to determine if you go from primary ADT alone to ADT plus second-line Zytiga or Xtandi. You just try it anyway and see. Part of the reason is that AR-V7 is much less prevalent before the failure of second-line ADT drugs.
But then, after one of either Zytiga or Xtandi fails, I would agree that if you are AR-V7 positive, don't go onto the other of the two second-line ADT.
Going from one second-line ADT agent to another is generally a bad strategy anyway. It's typically not effective or not effective for more than a few months. Chemotherapy is generally a better choice after second-line ADT failure (see CARD trial). As we know, both Docetaxel and Cabazitaxel work with ARV-7 mutations.
At this point, it looks like the best sequencing is second-line ADT followed by chemo, then possibly another anti-androgen treatment after chemo.
That's my plan, along with molecular testing for treatable mutations after progression.
Thanks for the prayers and the discussion. I'm just going by what I've read and always interested in reading/learning more.
My understanding is that CTC testing for AR-V7 is not part of the treatment decision process at this time although that may change.
It does look like the thinking on this is changing, in part based on the results of the PROPHECY trial. CTC testing for AR-V7 may soon become a standard part of the decision making process before start of an ARSI after castrate resistance. Although it might still be diffcult to make a treatment decision based on some level of AR-V7 CTCs that is questionable.
Dr. Sartor in NOLA does BAT, he listed it as one of the possibilities if Xtandi stops working. Then rechallenge with Xtandi. He also said I could try Provenge especially while PSA is low or opt for a PSMA scan to see where mets are and treat with beam radiation. PSMA would be out of pocket, he is hopeful of FDA approval in 2021. Last would be Jevtana would could reinvigorate Xtandi as well.
Scheduled an appointment with Dr Tanya Dorff at City of Hope in Duarte, CA to discuss some other possible treatments for castrate resistant metastatic prostate cancer. June 10th. Will keep you posted on this.
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Possible castrate resistance already?
Emerging castrate resistance
PC no longer castrate resistant 
Casodex after castration resistance?
Castrate resistant 
