Jerry Deans Memorial – June 24th; Pix & Eulogies

Jerry Deans Memorial – June 24th; Pix & Eulogies

Jerry Deans Memorial – June 24th; Pix & Eulogies

Some 200 folks gathered together last Friday, June 24 at the Cold Spring Baptist Church in Mechanicsville, Virginia. to celebrate the life of our dear Advisory Board Member, Jerry Deans, Of Blessed Memory. I was honored to present one of the three tributes … and no surprise, we all said the same thing in different words.

  • Jerry loved life
  • Jerry loved to spread love
  • Jerry lived for the moment

Let’s be honest … there are few, if any, who would not want to be remembered for such wonderful and embracing atttributes. We loved Jerry becasue Jerry loved everyone!

Here first are my words, followed by those of Jim Schraidt that I read on his behalf. Alongside Jim’s eulogy, you see a picture in the church displayed on a carousel showing Jerry and Jim touching hands on their bucket list diving trip  to Key Largo 12 months ago together with the original a little further down.

“This disease, (prostate cancer) as well as all cancers, thrusts people into the ‘Belly of the Beast.’ You have to experience it yourselves to know how devastating it can be. But there is help and hope. No matter what you are battling, there are people who have dedicated their lives to help improve yours.”

Not my words … I wish I was so eloquent. These are our beloved Jerry’s words. Mr. Deans was one of those immensely compassionate folks who dedicated his life to helping improve the lives of others who found themselves on the same road he was traveling – whether the loss of a loved one, cancer, or frankly any life experience, Jerry was there to help and support.

Jerry had lived with prostate cancer since 1999, aged 50. Unlike most of you sitting here, I came to know Jerry through prostate cancer. When prostate cancer came into my world it was both a curse and a blessing – Jerry was one of the biggest factors that made it a blessing.

It is also the reason I stand here before you all today. Likely, the majority of you know little about Jerry’s prostate cancer life. Patsi asked if I could do my best in 5 minutes or so to correct that, and it is my privilege to assume that honour. I can’t really even begin without paying tribute to Patsi’s role in how Jerry navigated this 23-year disease path.

As evident in all aspects of their marriage, Patsi was Jerry’s rock and support along with his faith. From keeping him on the right track with exercise and diet, to helping maintain his medical records – especially in recent months, attending appointments, providing continuous nurture, maintaining the household through emotional swings caused by the never-ending hormone therapy …. and what does that mean – living life for the past 20 odd years with no testosterone in your body. Yup Gents – you heard right!!

No T messes you up good! All those symptoms you hear the wife complaining about when she hits menopause – hot flushes, fatigue, brain fog, weight gain, emotional instability. Our men complain of the very same! All down to zippo testosterone each and every day. Who knew?? Well Patsi did, and she was one of the biggest reasons Jerry weathered the storm better than almost anyone else we have ever know living with advanced prostate cancer.

Jerry was truly amazing …. As far back as 2006, he was found to have metastatic lung nodules. These nodules were a bit like a spiritual epiphany … REALLY. They would repeatedly appear and disappear over many years, but we knew that they were prostate cancer cells in Jerry’s lungs. NO ONE LIVES 16 YEARS WITH LUNG METS.

And some of you may recall Jerry knocking off a bucket list item this time last year. He and our good buddy Jim Schraidt went diving in Key Largo. What you may not have known is that Jerry was already having some cognition issues. Why? …. brain mets!! NO ONE LIVES 15+ MONTHS WITH PROSTATE CANCER BRAIN METS. Even his neurosurgeon told him that.

In fact, Jerry continued to defy medical science for 23 years., He experienced almost every prostate cancer treatment known to man and his disappointment was that there was no more to roll out … but more of that later.

Jerry was always immensely grateful to his medical team – as I reflect, I don’t ever recall him badmouthing his docs …ever! More often he was calling to tell me how graciously and compassionately they had received him! That reflected Our Man!

Right now, I want you to hear directly from Jim Schraidt in Jim’s own words – the dear friend with whom Jerry went o Key Largo last year. Jim cannot be with us today as his wife Jane is undergoing cataract surgery in Chicago, but as they say – this message is endorsed by all Jerry’s UsTOO colleagues. UsTOO, btw, is no more and has been merged into ZERO; Jim now sits on their Board.

Jim Schraidt’s tribute below inserted here.

To borrow a term from one of our Pfizer colleagues, Jerry was a LEGEND of support for prostate cancer patients. Somewhere around 2006, Jerry started attending Peter Moon’s UsTOO Support Group here in Richmond.  Peter – I feel sure you are here – please stand up.

Peter was one of the very few local folks who knew and understood Jerry’s condition. He has been a member of Jerry’s inner support circle longer than anyone except Patsi. Meanwhile, Jerry loved what UsTOO was doing and before very long he was offered a seat on the UsTOO Board where he could evangelize for support in the same way he evangelized for his faith. Indeed, he was a legend, and under his navigation UsTOO expanded and grew its loose network of physical, mainly peer-led support groups across the nation and the globe.

By the mid 20-teens, Jerry was Vice Chair and ready to step into the chair when his advanced prostate cancer made him think twice about assuming those responsibilities. Instead he took to the sidelines to support, coach and guide from the wings. 

It was around 2014 that I came to meet Jerry. We knew of each other – I had been a bit of a rebel when it came to UsTOO as we engineered a scheme to replace the ineffective Chief Exec. Nonetheless, in 2014 the Board voted to give me and one of my accomplices-in-crime, dear Dominic Marrese Of Blessed Memory , national recognition awards. In my case it was for the work I was doing virtually in prostate cancer support.  I continue to be active in virtual patient support for several diseases and conditions through AnCan Foundation. Jerry became a member of our Advisory Board when he stepped down from UsTOO in 2018, 2 years after we formed AnCan.

Jerry was a true confidant and advisor, both on personal and AnCan issues. I sought Jerry’s counsel when I was in a pickle, listened carefully and closely to his words of wisdom and heeded them. He was never afraid to tell me I stepped over the mark or should back off … and frankly, I can’t ever remember doing anything against his advice. Jerry guided me with great care and compassion; I will always hear him in my inner ear as I continue to ask for guidance.

Personally, it was an immense privilege to navigate Jerry through the recent maze of prostate cancer approvals and developments. And while the grief and bereavement support group that he led in Richmond, often coincided with our meetings, whenever Jerry attended our Advanced PCa virtual group, he was a rock star. None the least, when Jerry joined from his hospital bed a couple of months back to show us his battle scar from removing the brain mets.

It was ALWAYS an honor to explain developments. I navigated and guided Jerry on his medical journey as we developed the questions for him to ask at his upcoming appointments. He was fearless …. and always wanted to do more. right before entering hospice Jerry was still asking Patsi what else we could do …. what a surprise!!

“Not Today”

I can truly say in Jerry’s case it was never out of fear of death but love of his family, friends, church, colleagues, mentees … in fact humanity in general. He wanted to be around to do more good and spread more love.

Jerry was a man of great faith … not my Jewish faith, but he respected that in his conversations with me which I always appreciated. We all hope that faith is rewarding him now. All of us have lost a true friend and an immense human being …. may you all receive much comfort as the pain of recalling Jerry subsides, and may Jerry’s memory always be a true blessing.

Let me close as I started … with Jerry’s own words ….

“One of these days this cancer might get me, but it might not be today and probably not tomorrow. Since it is NOT THIS DAY … Today we fight, and live and love and do everything we can to help others along the way. “

Onward & upwards …

 

Jim Schraidt’s Eulogy 

I first met Jerry when I was appointed to the Us TOO International Board of Directors in 2015, but I really got to know Jerry better when we both were selected to attend a week-long retreat for non-profit leaders in San Francisco in 2017.

 It was there that we spent hours talking about our dreams for the prostate cancer community and our personal journeys with prostate cancer.  Although our journeys have been very different, Jerry was always interested in and respectful of my issues.  He truly helped me in my journey and in turning my negative emotions into positive energy and concrete plans for supporting and advocating for the prostate cancer community. 

During the retreat, I was amazed by Jerry’s ability to communicate with and support all of the other participants, most of whom were women.  His extraordinary communication skills came from a sincere interest in the people around him, his ability and willingness to listen, and his positive non-judgmental and hope-filled approach to life and problem solving.  He has spent countless hours using those skills for the benefit of the prostate community.

 On a more personal note, last June, Jerry graciously invited me to join his bucket list diving trip.  My son Brian had died about three weeks earlier, and Jerry knew that Brian and I loved diving together.  Besides rejoicing with Jerry as he fulfilled this bucket list wish, he and Patsi helped me cope with my grief and remember good times with Brian. 

Jerry, I miss you brother, but I know you will always be with me.

By the way, I was not the only AnCan’r present. Super-Volunteer aand Moderator Rich (and Brenda) Jackson drove up 100 miles  from Norfolk, Va to keep me company. I was very grateful to see a familiar face. Boardie and Moderator,Herb Geller would have been present too, but was sailing in Scotland.

Onward & upwards, Jerry … your memory will forever be a blessing to all of us.

Special Presentation: Prostate Cancer and Treatment Regret

Special Presentation: Prostate Cancer and Treatment Regret

In April, we had Dr. Christopher Wallis (Assistant Professor of Urology, Department of Surgery, University of Toronto and Urologic Oncologist) give a talk to our AS group titled “Prostate Cancer and Treatment Regret”, a common phenomenon patients experience after making their choices for treating their prostate cancers.

Dr. Wallis found in his research that about 13% of patients with localized disease overall have second thoughts about their choices. This includes patients on active surveillance. The surgical group had the most reset followed by radiation and AS.

“Every choice has risks and benefits. The goal isn’t just to cure the disease but to live a better quality of life” Wallis said.

He said that in counseling patients, one of his challenges is that there is not “a perfect correlation between symptoms and disease.” In other words, some patients are OK with losing their sexual potency—a major concern—while others are devastated. Some have similar reactions to incontinence. “Patient-centered care improves outcomes,” he observed. Walis said long-term, “financial toxicity” from treatment also is a largely unexplored topic.

Watch this presentation here:

 

Slides will be posted when available.

For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

 

Special Presentation: Prostate Cancer and Treatment Regret

Special Presentation: Novel Strategies to Treat Prostate Cancer

In March, we had Dr. Pamela Munster (UCSF Helen Diller Family Comprehensive Cancer Center, and AnCan Advisory Board Member) give a talk to our AS group titled “Novel Strategies to Treat Prostate Cancer

There were discussions about an exciting new treatment for Prostate Cancer in the works, plus hear from the AS community about anxiety, finding the right medical team, and how relationships impact stress levels in this special presentation.

Watch here:

 

Click here to the view slides from this presentation.

For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

 

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 7, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 7, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 7, 2022

(Got it out early this week, ahead of travelling!)

We’ve all been waiting for Ben’s debut, and here it is on an almost record night with 57 particpants! He does a great job, ably supported by our Moderator Team.

Next week’s meeting will be on Tue, March 15. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights! Almost done with this crazy schedule.

All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/

Editor’s Pick: Using the same 2nd line anti-androgen for 3 or 4 years may be controversial; chopping and changing Tx can keep the cancer off balance (rd)

Topics Discussed

Newbie leads us to discuss long term use of 2nd line Anti-androgens; chop and change can keep cancer off guard; Medicare coverage; another low PSA, high Gleason at Dx; neurosurgery in short order puts Lu177 PSMA on hold; depression and anxiety more common than you think – best meds?; there’s a Hopkins multi-disciplianry clinic – but only for newly diagnosed seeking a treatment path; should you fast pre-chemo?; ask for Dr. Wassersug’s HT bible; new Canadian Advanced PCa Group starts soon; what’s causing weight swings; be sure to taper off steroids; Lu177 PSMA showing great results

Chat Log

William Franklin (to Everyone): 6:09 PM: Richard, we wish you and your wife the best and a speedy recovery.

AnCan – rick (to Organizer(s) Only): 6:17 PM: she’s a GU med onc

AnCan – rick (to Organizer(s) Only): 6:28 PM: Herb/Len/Peter …. is BRCA more common in African Americans??

Len Sierra (to Organizer(s) Only): 6:28 PM: Not sure.

AnCan – rick (to Organizer(s) Only): 6:36 PM: It was raised in the meeting I was in last week. Suggested that AA’s had higher incidence. I asked.

AnCan Herb (to Organizer(s) Only): 6:40 PM: This was in an ASCO abstract: In conclusion, we observed a significantly higher rate of BRCA1/2 in the African American population when compared to non-Ashkenazi Jewish Caucasians.

AnCan – rick (to Organizer(s) Only): 6:42 PM: Tx Herb

Richard Wassersug (to Everyone): 6:52 PM: Thanks!

Frank Fabish (to Everyone): 7:00 PM: Thank you guys. Got to run.

AnCan – rick (to Everyone): 7:04 PM: SVI must have been treated Richard

AnCan Herb (to Organizer(s) Only): 7:06 PM: https://www.koin.com/news/wildfires/builder-loses-his-lifes-work-in-monster-bootleg-fire/

AnCan – rick (to Everyone): 7:07 PM: This must be our guy. What a horrible thing to happen ….. that can bring on disease for sure. Hearts go out to him.

James Miller (to Everyone): 7:16 PM: Okay

Jimmy Greenfield (to Everyone): 7:28 PM: Neither of those drugs are opiates!

C Huerta (to Everyone): 7:28 PM: Ok. Thanks for the update. Only the Xanax is a controlled substance.

AnCan – rick (to Everyone): 7:35 PM: Gents ….. FYI Dr. John is a psychiatrist …. and here as a peer.

AnCan – rick (to AnCan Herb): 7:36 PM: My peach is 75mg and the grey is 37.5

AnCan Herb (Private): 7:37 PM: According to the information I have the white is 225 extended release

Stephen Saft (to Everyone): 7:49 PM: I did a fast mimicking diet called Prolon. It worked well for me.

C Huerta (to Everyone): 8:01 PM: The “fasting”/calorie restriction before and after chemo was published by UCSF. The goal was to limit the side effects of chemo.

George Rovder Arlington VA (to Everyone): 8:01 PM:Androgen Deprivation Therapy Publisher ‏ : ‎ Demos Health

James Miller (to Everyone): 8:01 PM: I have to go now Thank you all for inviting me.

C Huerta (to Everyone): 8:02 PM: I heard about it in 2016, unfortunately after my chemo, so no anecdotal nformation from me. Got to go.

Stephen Saft (to Everyone): 8:12 PM: good night. Very tired.

Julian Morales-Houston (to Everyone): 8:26 PM: YES

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 7, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 1, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 1, 2022

AnCan was honored by the GU ASCO 2022 Conference in mid-Feb, where we pesented our abstract and poster. You can see just how effective our support groups (and recordings!) truly are: https://ancan.org/ancan-recognized-by…

If you missed Dr. Rachel Rubin’s excellent webinar on Intimacy and Sexual Dysfunction, watch the recording at https://ancan.org/webinar-cancer-chro… Next week’s meeting will be on Mon, March 7. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights!

All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/    To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/

Editor’s Pick: Wot a session – we covered everything! You choose this week … and leave a comment (rd)

Topics Discussed

How reliable is C-11 acetate scan?; Pylarify locations; where do you find PSMA protein?; brain fog from enzalutamide; ARASENS trial; Lyrica for sciatica?;shower safety; postural hypotension; Ssign up for ZERO Summit; PROPEL trial – abi + olaparib/PARP-I; PARP vs anti-PD1; cardio-oncology issues and presentation; abscopal effect may improve PARP-I; finally something works WELL – cabazitaxel + carbo; anemia and Procrit; resuming abi may have worked; prednisone vs dex with abi

Chat Log

AnCan – rick (to Everyone): 4:16 PM: https://www.pylarify.com/site-locator

AnCan – rick (to Everyone): 4:39 PM: ARASENS trial GU ASCO22

Paul Freda  Florida (to Everyone): 4:47 PM: Have to go give an online lesson. See y’all next week. 🙂

AnCan – rick (to Everyone): 4:49 PM: REGISTER FOR THE ZERO SUMMIT THIS COMING WEEKEND … https://zerocancer.org/fight/become-an-advocate/summit/

AnCan – rick (to Everyone): 4:50 PM: Postural Hypotension

Dennis Correia Arizona (to Everyone): 4:53 PM: Leaving the meeting early for another meeting this evening.  Great discussion among the regulars tonight.

Len Sierra (to Everyone): 4:54 PM: Frank, I think you’ll find this little book very helpful for low back in general.  It’s called, Treat Your Own Back.  It’s very inexpensive.

AnCan – rick (to Everyone): 5:03 PM: PROPEL trial ….. abi+olaprib

Peter Kafka (to Everyone): 5:03 PM: IMUDX swab for Keytruda tolerance

AnCan – rick (to Everyone): 5:18 PM: Darryl Leong  – Cardio-oncologist Seminar https://ancan.org/active-surveillance-for-prostate-cancer-can-you-have-your-cake-and-eat-it/

Wang Gao Shan – PA (to Everyone): 5:20 PM: Thanks Everyone I have Another meeting coming up… Gao Shan

AnCan Herb (to Organizer(s) Only): 5:23 PM: I think we ought to look carefully at the Propel trial to compare with other therapies

AnCan – rick (to Organizer(s) Only): 5:24 PM: Wot a surprise …!!!

Frank Fabish (to Everyone): 5:24 PM: Thanks guys for the excellent feedback. Got to leave the call. See you Monday.

Len Sierra (to Everyone): 5:34 PM: These are rare but serious side effects of epoetin alfa:

Blood clots Heart attack Stroke Increased risk of death Tumor progression                   https://chemocare.com/chemotherapy/drug-info/PROCRIT.aspx

Tumor responses improved following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264443/

Conclusions:  Durable PSA responses occur in up to 40% of patients following a ‘steroid switch’ for PSA progression on abiraterone and prednisone. Studies are ongoing to elucidate the mechanisms underlying this response.

Jerry Pelfrey – Mexico (to Everyone): 5:50 PM: got to go my son called

George Rovder Arlington VA (to Everyone): 5:55 PM: Thank you Peter and all