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Opinion on second opinions (stage 4 mets) CRPCa

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Posted 5/27/2017 1:55 PM (GMT -5)
I am considering going to a major cancer center for a second opinion. My onco, who is supportive of my doing this, said the main benefit would be if there was a clinical trial I could participate in, but that such participation would require frequent travel to the cancer center. I work full time and wouldn't be able to do that.

So I think I would go mainly to hear whether they agree with the treatment path I'm on or would recommend my local doc doing something else. Here's my question: how do you decide which center to go to? And which doctor to see? I have no idea how to choose and how to set all that up.

Thanks.
Posted 5/27/2017 2:32 PM (GMT -5)
How old are you? Where do you live? But what you have done and are doing looks like it's working very well !
Posted 5/27/2017 2:56 PM (GMT -5)
I'm 59. I live in Knoxville, TN. I wouldn't say my current treatment has been particularly successful as I've gotten much less than the median length of benefit from the first and second hormone therapy treatments. But I'm happy I don't feel worse.
Posted 5/27/2017 3:05 PM (GMT -5)
Oliver Sartor at Tulane in New Orleans and Eugene Kwan at Mayo Clinic in Minnesota would be two to consider. Both are well regarded for doing what it takes with advanced situations. Here is Atlanta Vaughn Kasabian at Georgia Urology also has a very good reputation.
Posted 5/27/2017 4:41 PM (GMT -5)
I agree with your oncologist that what is really of interest to you is what they are trying in some of the more interesting clinical trials. I think your best bet for second opinions would come from the leaders in initiating clinical trials for men with mCRPC. The short-list would be:

• Emmanuel Antonarakis at Johns Hopkins
• Howard Scher at MSK
• Celestia Higano at UW Seattle
• Christopher Logothetis at MD Anderson

They are the heads of large departments heavily into research of urological oncology, and are the lead investigators on many of the major clinical trials for mCRPC. These are most likely to have trials that have not yet been announced.

The only approved therapies you haven't tried yet are Xofigo and Zytiga. I think you got an excellent response from Xtandi, and wouldn't be so quick to give up on it just yet -- PSA of 1.6 is excellent considering that your PSA had been 200 - and what did it do for your bone mets?

In fact, if you received the Jevtana treatment while you were still hormone sensitive, you may be eligible for the clinical trial at Vanderbilt that combines Xofigo with an immune checkpoint inhibitor:

/clinicaltrials.gov/ct2/show/NCT02814669

Some of the interesting clinical trials for men in your situation are the Lu-177-trial in Houston and soon at UCLA, and the 131I-MIP-1095 trial at MSKCC.

/clinicaltrials.gov/ct2/show/NCT03030885

/clinicaltrials.gov/ct2/show/NCT03042312

If you have a mutation that affects DNA repair, one of the PARP-inhibitor trials may be a good choice:

/clinicaltrials.gov/ct2/show/NCT02484404 note: an NIH trial - they pay for travel and accomodations

/clinicaltrials.gov/ct2/show/NCT02975934 note: in Nashville

/clinicaltrials.gov/ct2/show/study/NCT02854436

You can also consider de-bulking the prostate.
Posted 5/27/2017 7:21 PM (GMT -5)
Wow...thanks for your reply, TA! Very helpful. I will give these a careful read and talk to my onco about them.

I will certainly be staying on the Xtandi for now--it brought my PSA from 7.6 in January down to 1.0 in March. The earlier drop last Spring/Summer was from the Firmagon/Eligard/Casodex/Jevtana. It didn't last.

For the past two months my PSA has been rising. I get tested again next week, so we'll see if it stays as a linear progression, picks up steam, or settles down. The median time before disease progression on Xtandi is about 18 months, from what I've read. I'm not confident of achieving that.

My bone mets are relatively stable. Between December and May (my two most recent scans) I had a little new uptake in two ribs, but overall the scan looked lighter. The new uptake may have happened between when I got the scan in December and when I started on Xtandi at the end of January. My alkaline phosphatase has been below the normal range for the past two months, so I think that is encouraging.
Posted 5/27/2017 7:24 PM (GMT -5)
good luck on your search, water under the bridge.

side note - tall allen, you are amazing. how do you retain all of this valuable information? and do you specifically work in the prostate cancer field? bc if not, you should open an office for consulting & people would fly from all over to see you. we've met with so many people here in los angeles (even mark scholz in the marina- which was a waste of time, btw- you were right) & i learn WAY MORE from all of your posts here on healing well.

same goes for many other contributors. such a gift to all of us "newbies" !!!
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