New stage IV, Gleason 9 diagnosis

Early in my diagnosis, my original urologist refused to consider anything but LUPRON shots.

I kept saying, "What ELSE should we be doing?"

There came a day when I stated I was going to add an oncologist to my team. That decision was a game changer!

That's the day "doors and windows" began to appear in the brick wall my urologist seemed to build all around me, in terms of treatment possibilities.

My oncologist got chemotherapy infusions going THAT same week, then started talking about a new breakthrough medication called ZYTIGA.

I needed a doctor with a VISION ... and a doctor who would encourage me. I didn't need everything sugar-coated, but I did need a doctor who would stand alongside ME in the boxing ring and help me FIGHT!

My local oncologist has been a GODSEND to me. He looks after me like a brother.

From there, I met Dr. Eugene Kwon at Mayo Clinic, who is an advocate for updated scans and imaging for complex cases.

He is avant-garde in his thinking. He states, "If we continue to do the same old things, in terms of treatments, we will get the same old results."

I'm thankful you advocated for the new scan. Should you get to Mayo Clinic in the near future, all past scans can then be shared with them.

Has anyone discussed the possibility of the new treatment known as PLUVICTO (Lutetium-177)?

Also - is there a target date when your medical team will recommend starting ZYTIGA (generic version is Abiraterone Acetate)? You mentioned ZYTIGA as a possibility in a past post.

Stay the course, stay determined ~ no one here fights alone!

CYCLONE ~ # Iowa State University

Will and Reese ~

I first met Dr. Kwon at Mayo Clinic in 2015. That was a transformative day!

He doesn't shy away from cases with complexities. He sees patients from all over the globe. He knows when it's time to push the envelope or push beyond the boundaries of "the box" in informed ways.

You need to know you are being very proactive. You are doing a remarkable job ~ blazing your path & advocating for the best treatment path.

I just needed to say that.

It's a whirlwind, receiving a diagnosis. It's a sharp, sudden learning curve.

I always say, "Nobody handed me an instructional manual for handling and juggling all this."

Focus on one day at a time, but keep focused on the future.

Keep us all posted. We're all here to support you!

Standing alongside you both ~
CYCLONE ~ # Iowa State University

Hi there:
I was diagnosed nearly 11 years ago with Stage IV Gleason 9. I had mets in bones. Initially I was told that there was nothing to be done except to take Lupron until that ceased to work. I saw 3 local doctors - a urologist, oncologist and radiation therapist. All gave me the same grim prognosis. So I self referred to MD Anderson and nothing was the same after that. They proposed a very intense treatment program despite my diagnosis. I had my prostate removed with wide margins, radiation to the prostate bed and continued on Lupron for a total of about 18 months after which I went on a holiday that lasted about 6 years. about 3 years ago my psa rose to about 1.3. Scans showed cancer in a couple of nodes in the abdominal region. I had surgery to remove the nodes (and neighboring nodes) followed by more radiation therapy and Lupron for a year. I have been off treatment again for the last 2 years plus and my psa remains at < .1. If my psa goes up again to 2 or thereabouts, we will treat again and go for another holiday. My treatment thus far has not included any of the newer drugs that have been approved over the last several years. I hope my experience will give you hope. Feel free to ask me any questions.

Over and over we see the same kinds of stories: Men with complex cases with nothing but bad news, right up until they get themselves to a top tier treatment center. Mayo, MD Anderson, Sloan Kettering, Cleveland Clinic, and others.

Once they get there, the world changes. I'm glad this is happening for you. Keep us posted.

Reese and Will

I see you are getting great support from Cyclone et al, and are making good progress with early taxotere and soon abiraterone. That's great to see those treatments getting used early when they can make a difference.

I'll add just a few thoughts for your journey.
* Extra opinions from doctors working on high risk patients are great input... But you'll have to become deeply knowledgeable, weigh the options, and make your choices based on your own situation. I've had life changing advice from my "consulting physicians" and some that I thought was off the mark/reckless.
* I'm not sure how to qualify for Provenge these days, since early zytiga masks the onset of castrate resistance. I was able to get in a round of Provenge when there was a rise in psa on just lupron. Therefore I argued I was castrate resistant (slightly) and eligible. Also younger subsets of patients in the phase 3 studies had better outcomes with Provenge than with zytiga. The insurance company reluctantly agreed. Of course the day I finished Provenge I went on zytiga. (I'm a big fan of the one-two punch.)
* again I don't know the timing, but having genetic testing done can open up some interesting avenues of treatment down the road such as combined PARP and zytiga for instance.

I've found that every family has a mountain to climb or swamp to navigate, and this just happens to be mine.