What’s Going On at the Prostate Cancer Research Institute

BY MARK SCHOLZ, MD
In 2016, the PCRI will celebrate its 20^th anniversary.  The PCRI, founded in 1996 by Dr. Stephen Strum and I, was originally funded by a generous grant from the Daniel Freeman Medical Foundation.  This initial grant was spent on hiring Harry Pinchot, aka Helpline Harry. The helpline format adopted at the PCRI was modeled after the work of Lloyd Ney, the founder of PAACT.  PCRI’s helpline presently has four counselors: Jonathan Levy, Silvia Cooper, Bob Each and Charles Kokaska, all who provide unbiased prostate-cancer-related information, free of charge to the public.


PCRI started doing patient-focused conferences in 2006. Since 2006 this has become an annual meeting. The conference has grown in stature through the years by attracting world-renowned prostate cancer experts who are invited to present the latest information on optimal diagnosis and therapy. DVDs of the presentations are distributed throughout the world.  Partly due to the wonderful moderating presence of Dr. Mark Moyad, the conference has grown to be the largest patient-orientated prostate cancer conference in the world.


PCRI makes its biggest impact via its online presence by providing articles and blogs authored by prostate cancer experts from every specialty. But more importantly, PCRI is presently in entering into a new phase, the development of the SHADEs of Blue organizational format, a methodology to help patients sort through the overwhelming amount of information by reducing it into a more manageable bite-sized format.  As we all know, the internet has solved the problem of getting access to information.  Now the biggest problem patients face is information overload. How does one sort through the deluge of unfiltered information?


The development of the SHADES of Blue program will address this problem of information overload by segregating prostate cancer information into five large categories. Three are for the newly-diagnosed, Low, Intermediate and High-Risk, and two are for men with either relapsed disease or metastatic, hormone-resistant disease. The SHADES program is a big undertaking for a small organization like the PCRI, especially considering that we have expanded our conference schedule by now doing two conferences annually with the addition of the Mid-Year Update in March.


Looking to the immediate future, I never been more excited by the PCRI’s potential for making a positive impact in the lives of men with prostate cancer.   If my suspicious are correct, PCRI’s visibility is truly on the verge of taking a big jump.

2015 Conference Recap

BY MARK SCHOLZ, MD

Every year’s Conference presents recurring themes.  This year’s focus was prevention, combination treatment and timeliness were emphasized. We live in an era of exploding technological progress. It is a delightful problem to have a wealth of new treatment options and diagnostic tools.  However, just like buying a new car or a new smart phone, it takes a little time to learn the ropes and fully exploit the complete range and capabilities of the new technology.  A short blog can’t cover everything from a three-day conference.  Here are a few comments.

 

Dr. Dan Margolis, an expert on prostate imaging from UCLA, presented information on 3 Telsa, multi-parametric MRI’s capacity as a substitute for random needle biopsy in men with elevated PSA who have never been previously diagnosed with prostate cancer.  MRI offers the advantage of being equally or more accurate than random biopsy without relying on invasive techniques.

 

Dr. Chuck Drake, from John Hopkins, the preeminent expert in the world on immune therapy for prostate cancer, presented exciting data on how many of the new immune drugs work synergistically when given in combination.  “Synergism” means that when either drug is given by itself the anticancer effect is rather modest.  But when the two drugs are given in combination, the anticancer effect is multiplied.  Provenge has already been FDA approved for prostate cancer.  Hopefully Yervoy will also be an approved indication for prostate cancer in the next six to 12 months.  The combination of these two drugs together offers immense hope for jumpstarting immunologic treatment for prostate cancer.

 

Dr. John Mulhall, the expert in the world on sexuality and prostate cancer from Memorial Sloan Kettering, spent a lot of time emphasizing mindfulness in the selection of treatment. In other words, he was saying that it is better to minimize damage by selecting the least toxic form of prostate cancer treatment than trying to fix an already established problem.

 

Dr. Peter Grimm, sometimes called “The Father of Seed Implant Therapy,” delivered a candid overview of the world of radiation therapy, emphasizing the improved cure rates and reduced toxicity seed implant therapy offers.  He also spoke on how increased financial incentives to do IMRT, Proton therapy and SBRT, distorts the decision making process and slants treatment away from seed implants.

 

This is only the briefest of overviews and no words can express all the fun and games that Dr. Mark Moyad injected into the proceedings. I can only say that initial feedback from the attendees was extremely positive.

2015 PCRI Conference DVDs, which include all the presentations, will be available in six weeks at a suggested donation of $150. For more information, email: info@pcri.org.  In addition, the PCRI will be presenting its second annual Mid-Year Update, March 26, 2016, an afternoon of educational sessions in developments in the prostate cancer world. Laurence Klotz, MD who has been called “The Father of Active Surveillance” will be one of the speakers. Learn more at: www.pcri.org/2016-mid-year-update

PCRI Conference Recap

MARK SCHOLZ, MD

Early feedback about last week’s PCRI conference would seem to indicate that it was a resounding success. Close to 800 attended.  More importantly, the overall spirit of the conference was energized by hope as people learned about the many new treatment options. Also, we were blessed by one of the finest speaker lineups ever.  PCRI invited the world’s most eminent prostate cancer doctors to share information in their specific area of expertise.  

We also encountered real enthusiasm about the SHADES campaign.  I loved one comment from a conference sponsor, “It is truly imperative that we eliminate the shades of gray and replace it with SHADES of Blue.” It seems our message about prostate cancer not being a single disease is finally being heard.

For those of you unfamiliar with SHADES, PCRI has changed the technical names: Low-Risk, Intermediate-Risk, High-Risk, Relapsed, and Advanced disease each into a different SHADE of Blue: SKY, TEAL, AZURE, INDIGO AND ROYAL.  “Prostate cancer” is merely a broad umbrella term encompassing an immense spectrum varying from harmless to potentially life threatening. In this vast and confusing marketplace, SHADES help men distinguish between the different types of prostate cancer so they can be wise shoppers. Optimal treatment depends on correctly matching individual characteristics to appropriate therapy.

“Patient Empowerment” was the theme for the conference. The PCRI wanted to provide a place for patients to interact closely with experts and connect with other patients. Cancer care is advancing so rapidly that it takes a team effort with physicians and other patients to achieve the best care. For the average patient it’s too overwhelming to try and analyze the latest clinical studies, journal articles, and protocols.

The conference program opened with an update on active surveillance from Dr. David Krasne, a pathologist from St. John's Hospital in Santa Monica. Dr. Krasne discussed how imaging may be superior to using random needle biopsies for ongoing monitoring. Dr. Anthony Zietman, Associate Director of Radiation Oncology at Harvard Medical School presented the latest information about radiation therapy for intermediate and high-risk disease.  Dr. John Mulhall from Memorial Sloan Kettering discussed state-of-the-art science on preserving sexual function. My presentation was on relapsed prostate cancer. Dr. Mark Moyad moderated all the talks and gave a typically entertaining presentation on diet and supplements. During the Sunday breakout sessions patients and experts interacted with each other on a full spectrum of prostate cancer related topics.

No one can learn all about prostate cancer in a weekend; it’s too vast and confusing. Our job was to get patients started in the right direction.  Awareness is critical.  Now that treatments are becoming more effective, the stakes are much higher. No one wants to miss out on getting the best treatment.

PCRI strives to be an excellent resource by empowering patients, family, friends and support groups. PCRI also wants to foster a spirit of teamwork and cooperation that can make Shared Decision Making between patients and doctors a reality. We believe that the conference was able to successfully exemplify this spirit. DVD’s from the conference will be available soon and can be preordered at www.PCRI.org

The 2013 PCRI Conference, How to Handle So Much New Information

MARK SCHOLZ, MD

Every year, it seems, the enthusiasm and excitement at the conference grows. Why?  Certainly Dr. Mark Moyad who moderates the conference, and the PCRI staff and I, who organize it, have grown from our experiences over the years. We are fine tuning and improving the agenda over time. But this isn’t the primary reason.

The prostate cancer world is changing, and changing quickly.  In the early years of putting a conference agenda together, I used to spend a lot of time “scrounging around the basement” to find content with high enough quality for presentation.  Back then the main treatments for early and advanced prostate cancer were surgery and chemotherapy respectively. Now for these same stages we have active surveillance and immunotherapy.

So the problem now – it is insufficient to do justice to all the new information in a two day conference. Nathan Roundy, one of our helpline volunteers, who recently returned to the PCRI from sabbatical, came up to me after the conference and said, “I can’t believe how much things have changed in just the last six months!”

The introductory comments I wrote in the conference syllabus convey some of these same thoughts about how the PCRI handles the massive overload of new information:

“Knowledge is power. And what you don’t know can indeed hurt you.  However, in this modern information age, the deluge of unfiltered data can be completely overwhelming. How can patients without professional training sort through it all out and distil a sensible plan of action?” 

No one can offer an easy solution.  The prostate cancer world is complex, and there are too many behind-the-scenes conflicts of interest to simply trust the first smiling doctor you encounter.  Although you can’t escape from the responsibility of doing your homework, you can make sure that you are registered ‘in the right classroom.’ 

The field of prostate cancer is vast, so the PCRI breaks the disease down into different categories, which we have termed Shades of Blue.  Failing to recognize the different Shades of prostate cancer is like wandering randomly between classrooms teaching totally different subjects. Is it any wonder there is so much confusion? Patients don’t need more information. They need personalized information—unbiased resources that are tailored to their specific disease category.”

Even though cancer is a serious subject, we had a lot of fun as well.  Ryan O’Neal came and shared his personal experience of having undergone focal cryotherapy with Dr. Duke Bahn. Dr. Mark Moyad and Ryan had a hilarious exchange culminating with Ryan giving Mark a kiss on the cheek.  Jerry Peters, our Grammy Award winning board member, along with his twelve-piece band, hosted a rocking evening at our Gala dinner Saturday night. Dr. David Hung, the CEO of Medivation, the manufacturer of Xtandi, gave a strikingly inspirational presentation concerning the acceleration of new drug development in the pharmaceutical world.

What a wonderful problem to have - with so many brand new treatments it’s hard to do justice to them in a two day conference.  The key is to recognize your shade of prostate cancer, identify the treatment options available based on that shade, and follow up with more research about those options.  The PCRI website is presently going through a major upgrade and will go live in the next week or so.  Check out www.pcri.org when you get a chance.

Successful Mentoring Means Everybody Gets Their Needs Met

BY RALPH BLUM

The matter of finding men able and willing to guide newly-diagnosed men who attend support groups requires considerable thought. Leaders often deal with very challenging situations.  For example, how does one handle the men who are attending with a single overriding need, the need to have their personal experience and their treatment decisions validated?

These “confirmation seekers” do not understand how their need for simple black and white declarations distorts the real challenges faced in selecting treatment. The reality with prostate cancer is that it is possible to have a bad outcome even though the “best” treatment may have been selected.

All prostate cancer treatments are potentially dangerous, placing a man’s quality of life in serious jeopardy.  All that the “best” treatment can offer is better odds,  a less risky alternative compared to the options. Guarantees of success are made by charlatans and believed by suckers. 

So in Lenin’s famous words, “What is to be done?”  The dilemma support group leaders face is to address the needs of all the individuals even though their needs may not relevant to the whole group. The solution came from an old friend, David Derris, a man whose decades of experience in guiding support groups have resulted in a sensitive and bias-free skill-set.

According to Dr. Derris a support group leader needs to somehow get across to the newly-diagnosed that scientific information about different treatment options only provides general guidance, not absolute answers.  How does he go about accomplishing this? Derris provides a simple solution: If the support group begins at 7 PM, he invites all new patients members come at 6 PM, an hour earlier. By providing the newly-diagnosed patients a separate session, all options can be discussed free from any pressure from the “confirmation seekers.”

Many newly-diagnosed men have a low-risk situation—a mildly elevated PSA, or a Gleason score of 3 + 3—which makes them candidates for active surveillance rather than immediate treatment. The field of active surveillance is dynamicly changing. New studies suggest that multi-parametric MRI approximates the accuracy of a needle biopsy.  These rapid changes in the way medicine is being practiced demand an open-minded approach in a collegial environment. A low pressure situation excluding the highly opinionated enables newly-diagnosed men to think more clearly and increases their self-confidence.

At the same time, no group wants to lose those experienced men, simply because their agenda includes confirmation of their own treatment decisions. These guys who have “been there, done that” and lived to tell their story have a valuable role to play as witnesses and informants. Sharing their experiences can provide long-term perspectives for the newly-diagnosed. Dr. Derris is to be commended for finding ways to ensure that all members of the group will have their needs met.

I was pleased to learn from Mark that those who now serve, or wish to serve, as support group leaders can, thanks to PCRI, sign up for a course in  “Mentoring” www.pcrimentors.org where they can learn from  the experiences of the best advocates in the field, men like “Snuffy” Myers, Mark Moyad, and John Blasko. Good news and more to come.

Whew, It’s Over!

BY MARK SCHOLZ

I just passed my annual stress test—the Prostate Cancer Research Institute (PCRI) conference. Lots of work, but certainly worth it--we had over 700 attendees from 41 states and 9 countries.  I was proud of all the 20 speakers, and particularly grateful for the contribution of Mark Moyad, MD who did a stellar job moderating.  Dr. Moyad and I reviewed some of the conference highlights on Sunday morning. They include reports on the following:

1. PET scans improve prostate imaging according to Dr. Dusing from Kansas City University and Dr. Kwon from the Mayo Clinic.

2. National Comprehensive Cancer Network (NCCN) guidelines recommend Active Surveillance for Low-Risk prostate cancer according to Dr. Klotz from the University of Toronto.

3. Multiple new chemotherapy combinations and agents—Carboplatin, Avastin, Xeloda, Custersin and Jevtana—are active against advanced prostate cancer according to Dr. Scholz.

4. Ipilimumab, an new immune treatment from Bristol Myers Squibb can induce dramatic remissions in advanced prostate cancer according to Dr. Kwon from Mayo Clinic.

5. A variety of very promising new agents—MDV-3100, TAK-700, XL-184—are in late stage trials.  Provenge, another new agent that works by stimulating the immune system is already FDA approved according to Charles Drake from Johns Hopkins.

The PCRI also announced at the conference, the launch of the Prostate Cancer Blue Community (PCBC); a web based prostate cancer community that is overseen by the PCRI helpline.  The PCBC has discussion forums about the conference and the different types of prostate cancer that we have broken down into Shades of Blue so that men can connect with other men in their same category of prostate cancer. The PCBC can be accessed at www.pcribc.org.