Help - Zytiga (Abiraterone) with Lupron & anything else you would recommend.

[Stickingaround1]

Hi All, I am 56 years old, have been on board with you since April. I was dx in February 2017 with pca, GS 8, PSA 8.8, spreading to left seminal vesicle and two bone mets, one in right pelvis and one in right femur. I have been on Lupron with Casodex (50 mgs daily) and feel a million times better than when I was first dx. I am being treated at UCSF and have been relatively happy so far. I recently became eligible for a clinical trial which involved infusions of pembrolizumab (200 mgs every 3 weeks for 9 months), followed by 2 high dose radiation in the prostate (13.7 gy) on week one and two. There has been some success with head and neck as well a lung cancer, so the the high dose radiation would theoretically kick in the immune system with the immunotherapy (Pembrlizumab) and work in conjunction to, maybe be able to reverse cancer growth. I ended up opting out at the last minute (very tough decision) due to my family (wife, son and brother) just not feeling good about it since this combination was never tested together and Merck had to pull two, phase three clinical trials using this drug in conjunction with two proven, safe drugs, since there was an usual amount of death to the patients (unknown number) in the two referenced trials (Multiple Myeloma). So with all that background, I am meeting with my oncologist tomorrow (Tuesday, July 18) to discuss adding Zytiga to my current regimen of 3 month Lupron with Casodex as there was supposed to be a study that came out in June which had results that claimed taking all three in conjunction would result in longer life vs taking Zytiga after a person begins to become ADT resistant to the Lupron. With that, I am wondering if any of you have heard of, or can reference the study and secondly, since I have only two bone mets and my seminal vesicle involved besides my prostate, should I be doing anything else (such as radiation) besides just ADT? it is almost unbelievable that I get so much information, not to mention compassion from this board than seems to exist anywhere else out there. Thank you all very much and happy (maybe not the correct word) to be on this journey with all of you!!

[bhammel]

Had 2 rounds of HDR brachytherapy at UCSF in 2007-8. I had few options since rectum removed in 2002 prevented surgery. Did not work. Just got to radiation after years of ADT only. Lupron had kept PSA under 10 but recently zoomed to 50 and up; lotsa pain. Radiation helped immensely and working up to it in baby steps am on OxyContin with pain non-issue. On Lupron and not much else.

[Stickingaround1 in reply to bhammel]

bhammel, thank you for your reply and perspective. I do think i will look into radiation. My chemical oncologist has been adverse, but I will broach the subject again tomorrow. I appreciate your reply and best of luck with your ongoing treatment!

[JamesAtlanta]

I forgot to say that I found this study when Darryl share it with all of us a few weeks ago. Thank you, Darryl!

[AlanMeyer]

I'll add that UCSF has a reputation as one of the great cancer research and treatment centers in the U.S. and the world.

If it were me, and the UCSF doctors recommended it, I'd be sorely tempted (as you were) to join the pembrlizumab trial. In theory, I think immunotherapy, especially when used in conjunction with hormone therapy (as opposed to after HT has stopped working) is something really new and promising. It can take time for immunotherapy to build up the immune system's response to cancer and holding the cancer down with HT while the new therapy is building up might be very effective. However I have to acknowledge that your wife, son and brother have a good point too. There have been some very bad reactions.

As for the Lupron + Zytiga, it used to be standard to do one treatment at a time, "saving" the next treatment for when the first treatment fails. But it seems like all the recent trials are showing that is less effective than blasting the cancer good and hard right from the beginning. As I understand it, Zytiga is given as daily pills. If something goes wrong, i.e., bad side effects, it's easy to quit the Zytiga, though you may have to wind down the prednisone over a week or so.

Radiation? That might be easier to do if you weren't on HT because the cancer metastases would show up better on the scans so the docs would know where to aim. However, you can ask your oncologist to refer you to a radiation oncologist to get an opinion from someone who knows more than we do.

Best of luck.

Alan

[Hidden in reply to AlanMeyer]

I've heard that hormone treatment is pretty standard before radiation treatment aimed at the prostate -- it tends to shrink the prostate and make the tissue more sensitive to the radiation. At least, that's what I was told by a radiation oncologist.

[AlanMeyer in reply to Hidden]

WSOPeddle:

That's a good point. I had HT before my radiation, and I know that is common and beneficial when the radiation is directed at the prostate.

I was thinking that radiating the metastases was different in that, while the rad onc knows where the prostate is, he doesn't know where the metastases are except by scans that show them up. However, in thinking about your comment, I think my own might very well have been wrong, so ...

Stickingaround1:

Please disregard what I said about radiation and HT. It might be right, but it might be wrong. You'll need to hear from someone much more expert than I am to get a credible answer.

Good luck.

Alan

[Stickingaround1 in reply to AlanMeyer]

Alan, thank you very much for the insight and guidance. I will be on Zytiga as soon as insurance approves. Thank you very much again!

[DFZ4835]

With bone mets I would suggest you also should be on xgeva to keep your bones strong.

Dennis

[TommyTV]

Hi

I'm one of the 1900 men in the UK on the Zoladex + prednisone + Abiraterone from diagnosis. Arm G of the Stampede trial.

It has worked remarkably well for me. At dx, my PSA was over 600, Gleason 7 and 7 substantial bone mets, skull, shoulder, two ribs, pelvis and both femurs. Now, nearly 6 years later my PSA is still less than 0.1 and I'm in good health with very little bone pain.

The biggest effect of ADT has been muscle wastage. Both my legs are very weak, and everything I've tried has had little effect, in some cases causing real problems with my femurs feeling like they're 'buzzing'.

But, so what, I'm still here, relatively fit and well, just come off a cruise and very happy with my lot in life.

Good luck all.

[Stickingaround1 in reply to TommyTV]

Tommy, thank you so very much for your reply. Being part of the trial, and thriving made it a pretty simple decision for me. I cannot thank you enough!

[Stickingaround1]

James, I apologize for the late "thank you." Sharing the link was tremendously helpful in my meeting with my chem/uro/onc last week. I really appreciate it again!

[JamesAtlanta in reply to Stickingaround1]

Happy to help! Good luck!

I'm visiting MD Anderson next week and plan to discuss with them while I'm there. I'll let you know if I learn anything that is helpful.

Best,

James

[GeorgeGlass]

were you able to get a psa doubling time after your initial treatment?