Double Negative Prostate Cancer

[Blair77]

Sorry if I’ve posted about this before. Mikes Prostate cancer has been termed “double negative” as it needs neither neuroendocrine cells nor androgen receptors to grow. He’s doing platinum based chemo currently @ UCSF. I’d like to consult with MDAnderson or some other facility that might have a different perspective without having to go there. Does anyone know of programs that review and consult from afar?

[Lagovista2018]

Hi Blair77, my husband (mike also) my husband has stage 4 prostate cancer Mets to bones with neuroendocrine differentiation cells which means it’s aggressive. It’s almost been a year since diagnosis we’ve been to MD Anderson and spoke to Dr. Paul Corn and he was great! We live in San Antonio and his oncologist worked with Dr. Corn so they constantly talk back and forth about my husbands case. Long story short my husband had 6 rounds of chemo carboplatin and Etoposide followed by 10 rounds of radiation he’s also on zytiga, prednisone, calcium pills (OTC), Xgeva shot once a month, Trelstar hormone injection every six months. He was done with chemo in early May and done with radiation in mid June. Everything has been going great since his oncologist is treating his cancer because of the neuroendocrine differentiation like small cell lung cancer. He has to go and get an MRI done of his brain and CT scans of his chest,pelvis, and abdomen done every 3 months he had one done yesterday and his doctor called me this morning to tell me that everything came back clean His PSA is 0.12. Are they treating your husbands cancer like small cell lung cancer? If not I would mention it to your oncologist. Between Dr. Corn and His oncologist Dr. Bucheit They decided to treat Mike’s cancer like small cell lung cancer.

[scarlino in reply to Lagovista2018]

My doctor at MD Anderson just prescribed same chemo for me. Hi name is Dr. Zurita. All the doctors I have contact with over my 6 years there are very good.

[vforvendetta]

When researching PCa after my father was diagnosed, I came across these:

dana-farber.org/appointment...

mdanderson.org/for-physicia...

my.clevelandclinic.org/onli...

uhhospitals.org/services/se...

We've never ended up using them as he went to University of Michigan for a second opinion and went with the treatment plan that they suggested.

I'm hoping that others can provide more input regarding experiences with online second opinions and "centers of excellence".

I wish you and your husband the best.

[Tall_Allen]

Aggarwal at UCSF and Paul Corn at MD Anderson are both excellent, imho, and I doubt you would see much daylight between them. I think they would both continue Mike on Lupron but not any of the second line hormonal agents. They would probably give him docetaxel with carboplatin to start, and if that's effective, maintain him with a PARP inhibitor. MD Anderson has a clinical trial that does exactly that.

The top oncologists all know each other, so you can simply ask your oncologist at UCSF to consult with Paul Corn or whomever he knows at MD Anderson.

Did the IHC analysis show that the cancer expresses PSMA? Was there a genomic test (eg, Foundation One) and did it show any of the vulnerable mutations (e.g., MSH2, MSI-H/dMMR, or BRCA)?

[Blair77 in reply to Tall_Allen]

Hi,

I don’t thinks he’s had an IHC analysis, can you give more info about what it is?

[Tall_Allen]

It's the tumor biopsy analysis that showed he doesn't have androgen receptors or neuroendocrine differentiation.

[Blair77]

Oh, ok thanks. I wasn’t given a copy of the results of that test. Dr. Aggarwal seems to think it’s unsure if he would respond to lu-177 treatment so I’m not sure if it indicated if he was PSMA avid or not.