AnCan’s Brains Trust Review Very Recent Seminal Prostate Cancer Work

AnCan’s Brains Trust Review Very Recent Seminal Prostate Cancer Work

AnCan’s Brains Trust Review Very Recent Seminal Prostate Cancer Work

A couple of weeks ago a prospective seminal paper was published in Nature . Of course, you don’t know if a paper is seminal until it is considered and acclaimed, but this paper is already getting plaudits.

It wouldn’t be the first time some of the paper’s authors have been acclaimed. Back in 2018 several of ‘the usual suspects’, Drs. Small, Aggarwal, Feng, Chi et al published a work in ASCO’s respected Journal of Clinical Oncology.  I had first heard about that hypothesis some 3 years earlier at a UCSF Prostate Cancer Research Retreat where Eric Small suggested that advanced prostate cancer morphs into a small cell/neuroendocrine like form as the disease progresses. The significance of this current paper brought the earlier one to mind.

So what is the revelation from this new opus. Well first a tip off – it was published in Nature! That immediately indicates that you need a science background, and maybe even a PhD to even understand the abstract. Not surprisingly, it left me cold so I reached out to our AnCan PCa Brains Trust for a better understadning. Herb Geller and Ben Nathanson independently took the time to reveiw and summarize their understanding in easy-to-understand, patient lingo … and that’s what is presented below.

Oh … and the revelation as I understand it – that in time liquid biopsies will allow us to better define and personally tailor hormone therapy for each man.

 

Prof. Herb Geller sees this paper clearly identifying that the sum of the parts as greater than the whole …. 

Current clinical practice depends upon traditional measures such as serum PSA and scans to stage prostate cancer and determine treatment protocols.  More recently, liquid biopsies (from analyzing a blood sample) have begun to provide more information about mutations and cancer progression.

A new paper in Nature from a large group of clinicians and scientists takes the use of liquid biopsies to the next level through the use of whole-genome sequencing and samples taken over time to provide a more detailed picture of cancer progression in metastatic castration resistant prostate cancer (mCRPC) and compare that picture with a similar analysis of a biopsied metastatic site.

One result is that the liquid biopsy can provide a more detailed picture than the surgical biopsy.  For example, they find, through the use of sophisticated analytical techniques, that the liquid biopsy shows that different metastatic sites have different mutations, and that sequential liquid biopsies can trace the evolution of the cancer within each site and how it contributes to overall progression.  This is in contrast to current methods which only look at the aggregate.

Two observations are of particular interest.  One is that they can follow the contribution of the individual sites to cancer progression.  Given that some sites may have specific mutations, this may suggest precision treatment protocols that are tailored to each mutation, either separately or in combination. The second is that, while there are many different mutations associated with prostate cancer, they reaffirm that the major driver of cancer progression is the androgen receptor, suggesting, in their view, medicine needs to keep finding new ways to suppress AR signalling.

The overall impact of this paper is that it provides methods that can be implemented more generally.  The major current impediments are the cost of whole-genome sequencing, which is decreasing exponentially, and the computational power needed to do the analysis.  However, given the huge potential for providing clinical insights, we should expect to see these methods get implemented at major cancer centers.

 

Ben Nathanson thinks this paper will open the door for Game Theory to play a part in treatment strategy …

A new paper in Nature allows us to witness the day-to-day evolution of a patient’s cancer as its mutations grow and shrink. This level of knowledge is unprecedented, and it can change the face of research and treatment.

Cancer’s guessing game

A drug trial may yield dozens of failures and one miraculous remission. Hormone therapy is indistinguishable from a cure — then stops working. Though we can investigate cancer down to the molecular level, help unraveling these cases is limited because the molecular data is only a snapshot.

We can see what’s different in the genes of the one exceptional responder, but we struggle to identify which differences were significant — and more importantly, why they mattered. We can inventory the mutations in our castrate-resistant cancer, but have no clue how they evolved and how they might be countered.

Instead of snapshots, we need live-action footage. This work provides it.

The very different makeup of five patients’ cancers and their responses over time. A color indicates a cell population with a unique set of mutations. Plots show the details of each individual’s response.  Circled numbers are times at which liquid biopsies were taken; AE numbers are patient IDs. The researchers were able to project back before the first measurement to the very start of the cancer. A lot of information was gained from a few measurements. From Herberts et al., Deep whole-genome ctDNA chronology of treatment-resistant prostate cancer.

Evolution of five cancers

The figure above shows the kind of information yielded up by the new work. Each plot is from a different patient; rises and falls are changes in his PSA. A color indicates a unique cell population with its own set of mutations.

We can see what’s happening in each patient’s cancer to cause those changes in PSA.

Based on liquid biopsies

The Nature paper has a lot to be excited about. The molecular information comes from blood samples — “liquid biopsies” — rather than conventional tissue biopsies. Tissue biopsies are impossible when a tumor is too small or inaccessible, and are time-consuming, require high-level medical expertise, and can be painful. Liquid biopsies just require drawing blood. 

Convenience aside, a liquid biopsy contains data from every metastasis, not just one.

Samples can be taken again and again during the course of the disease, tracking its evolution in detail.

Liquid biopsies are already used clinically to find treatable mutations in genes like BRCA2. The new results can turn liquid biopsies into the most revealing tool we have ever had to investigate castrate resistance. Ultimately it can make them the tool of choice for assessing patients and monitoring treatment — a requisite for precision medicine.

Real-time results

The work also can strengthen use of game theory and similar novel strategies to head off resistance. Cancer uses Darwin’s playbook: A mutation that improves survival in a hostile environment allows a cell and its children to dominate. If we continuously deprive a tumor of androgens, cells that need androgens will be replaced by mutations that don’t.

Thus one way to prevent resistance may be to modulate treatment so nascent mutations have no chance to grow. Trials are underway that do this, using PSA to monitor the cancer. We gain an advantage if we can lean over and read cancer’s cards. That’s what the research offers: an opportunity to see mutational populations growing and shrinking in real time.

No new equipment

Another exciting aspect of the work is how little it requires. There’s no special assay, no new machinery, no delicate lab procedure. It needs only a state-of-the-art DNA sequencer and public software. 

Thus any lab with a good sequencer can join this effort and expand it in countless directions. Part of the software was designed to fit the data in this specific study, but the authors explain their work, and the results are so compelling that other institutions are likely to help generalize the code.

Biological insights

The authors have already made biological discoveries using their methodology, and these dominate the paper. Most require a deeper knowledge of genomics than I can lay claim to, but at least two bear mentioning.

The research confirmed that the DNA in the liquid biopsies showed more diversity than DNA in comparison tissue biopsies – suggesting that tissue biopsies do indeed reveal only part of the story.

And the work sought to determine for the first time whether genes other than the androgen receptor gene change during androgen deprivation. The AR gene was, in fact, the only gene seen to change in every sample. Their conclusion: As long as ADT remains the backbone of prostate therapy, medicine needs to keep finding new ways to suppress AR signaling.

For now this is a tool for insight rather than treatment. Today, although we can see those colors and know exactly what’s in them, we don’t know what to do about them. There’s much we have to learn about cancer dynamics, but we now have a tool that gives us a front-row seat.

Summer of Art – July 21 Class – Dreamy Summer Sky

Summer of Art – July 21 Class – Dreamy Summer Sky

Summer of Art – July 21 Class – Dreamy Summer Sky

On July 21st, we had so much fun once again with our very own Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group). Hannah taught us how to create summer sunset backgrounds with acrylic paint, blending, different types of clouds, stars, and mountains. You could create 100’s of art pieces that all look different from this class with all the options there are. See what our community members created with this project in the AnCan Art Gallery.

 

What you will need:

  • Canvas or paper, rectangular is best.
  • Acrylic Paint (colors we used: blue, purple, orange, yellow, pink, and white. But feel free to use what you have, or make your own color palette!)
  • Toothbrush (it will make sense, I promise. You can go green and use an old tooth brush, as long as there is no fresh toothpaste on the brush)
  • Paintbrush
  • Water
  • Napkins – and lots of them
  • Something to protect your work space – newspaper, trash bag, etc.

 

Watch this here:

 

 

Funding for this project was provided by the HealtheVoices Impact Fund at the Community Foundation of New Jersey, which was funded by a contribution from Janssen Pharmaceuticals, Inc.

 

Would you like your art featured in the AnCan Art Gallery? please email me at alexa (at) ancan.org!

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

AnCan’s Brains Trust Review Very Recent Seminal Prostate Cancer Work

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 18, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 18, 2022

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings 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: The clear winner from this very well attended week is MENTAL HEALTH. Anxiety and depression come up multiple times. Gents – please STAY IN THE MOMENT(rd)

Topics Discussed

We welcome Dr. John as a Mod!; tiny changes in ultra, ultra sensitive PSA 7.5 yrs out make this man nervous and turn to dubious supplements; and small changes for this man 8 years post-RP are of concern; layering HT on a history of depression suggests medication; spinal reconstruction surgery appears timely and successful; PCa is stable but fevers a puzzle; blood biospsy ordered; is radaition cystitiis a concern?; UTI puts man in the ER/hospital – GU med onc fails to pay attention!; is ARASENS for me?; NGS shows trifecta of bad actor mutations; annual scans show stability; post-chemo Tx needs review for foamy gland guy; two of our Gents get mild Covid

Chat Log

Larry Fish (to Everyone): 5:57 PM: especially something for the short term at least – as effects of ADT can be so unsettling and problematic, right away.

Stan Friedman (to Everyone): 6:17 PM: Steve, our prayers are with you.

john antonucci (to Everyone): 6:39 PM: sorry guys gotta go early see you tuesday

Frank Fabish – Columbus OH (to Everyone): 6:42 PM: Got to go guys. See you next week.

Mike Yancey (to Everyone): 7:08 PM: Early appointment requiring a lot of miles tomorrow, so need to drop off a bit early. Good call. Thanks for allowing me to provide an update. See you next Tuesday

AnCan – rick (to Peter M): 7:10 PM: Peter – this is high volume mets that Richard shows!!

Stan Friedman (to Everyone): 7:15 PM: Have to go. See all of you online next Tuesday.

Julian Morales – Houston (to Everyone): 7:17 PM: Catch you guys next week – Another good!

Peter M (to Everyone): 7:20 PM: Good night gents!

Geoff (to Everyone): 7:21 PM: Must go. Thank you all!

Jerry Pelfrey – Mexico (to Everyone): 7:23 PM: Good Night Gents

Ted Healy- Portland, OR. (to Everyone): 7:28 PM: Thank you aal!

Glenn (to Everyone): 7:29 PM: Thanks everyone, good night

AnCan’s Brains Trust Review Very Recent Seminal Prostate Cancer Work

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 12, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 12, 2022

 

If you missed our recent webinar, “Genetic and Genomic Testing The How’s, Why’s and Where’s”, you can find it at https://ancan.org/webinar-genetic-and…

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings 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: If you’re on long term ADT, that cardio system takes a lickin’ but (hopefully) keeps on tickin’! Two Gents get scares this week (rd)

Topics Discussed

Graduate from Low/Intermediate Group gets educated on recurrence; Newbie w. Care Partner learns more about Pluvicto; another new man needs a GU med onc; same again for Gent in Fort Meyers; take care of your heart – check in with cardio onc; does ADT cause rheumatoid arthritis … and leg pains?; snake oil in Pheonix?; aiming for monotherapy darolutamide; give abi time to work; lay-up exacerbates muscle wating with joint replacements in sight.

Chat Log

AnCan – rick (to Everyone): 3:13 PM: We wil be spending time talking about Cardio-Oncology issues tonight.

AnCan – rick (to Everyone): 4:02 PM: Antonarakis, Stuart Bloom

George Rovder Arlington VA (to Everyone): 4:11 PM: https://www.genesiscare.com/us/our-doctors/dr-chaundre-k-cross/

AnCan – rick (to Everyone): 4:18 PM: Mario Bilusic at U of Miami https://doctors.umiamihealth.org/provider/Marijo+Bilusic/1900896?unified=Genitourinary%20Medical%20Oncology&sort=networks%2Crelevance&from=search-list

AnCan – rick (to Everyone): 4:18 PM: genitourinary medical oncologist

Joe Gallo (to Organizer(s) Only): 4:20 PM: Suggest he check YouTube replay for this session

Len Sierra (to Everyone): 4:34 PM: Risk of Metabolic and Cardiovascular Adverse Events With Abiraterone or Enzalutamide Among Men With Advanced Prostate Cancer. https://academic.oup.com/jnci/advance-article-abstract/doi/10.1093/jnci/djac081/6568024?redirectedFrom=fulltext&login=false

Bob McHugh (to Everyone): 4:35 PM: Eman A. Hamad, Temple Medicine

AnCan – rick (to Everyone): 4:41 PM: Webinar on heart issues by Dr. Leong https://ancan.org/active-surveillance-for-prostate-cancer-can-you-have-your-cake-and-eat-it/

ALFRED LATIMER (Private): 4:42 PM: Rick: Found that cleveland clinic has cardio-oncology here in Weston FL (near FLL). My current cardiologist is at CC. Will discuss this issue with him nextweek. Thx for the tip.

AnCan – rick (to Everyone): 4:44 PM: Dr. John on CureTalk – listen up here https://www.curetalks.com/cancer-therapies-and-your-heart/

john antonucci (to Everyone): 4:48 PM: it’s really Dr Moslehi not Dr John

Frank Fabish – Ohio (to Everyone): 5:07 PM: got to go guys. see you next Monday

Jim Ward (to Everyone): 5:10 PM: Gotta run, too. Thanks all!

David Muslin (to Everyone): 5:19 PM: GREAT MEETING ALL

Julian Morales – Houston (to Everyone): 5:20 PM: Thanks all – sorry i was late.

Donate Through Amazon Smile – Without Spending Extra

Amazon Smile

Today’s a BIG DAY if you’re a fan of ordering everything you need from Amazon.

 

October 11-12th are Amazon Prime Early Access Days, and guess what? If you sign up for Amazon Smile, you can give back to us without having to spend anything extra! It sounds too good to be true, but it absolutely is real.

 

Amazon will donate .5% of eligible purchases to the organization YOU choose. That could be us…we would be grateful for it, and you would be helping us provide quality peer-to-peer support for all AnCan-ers.

 

In case you’re new or need a reminder:

We’re a peer-to-peer organization that provides support to many different conditions – Prostate Cancer, Multiple Sclerosis, Sarcoidosis, Thyroid Cancer – quite literally just to name a few. We also host many a webinar – all in the name of support for our community and groups. Check out our YouTube page for past recordings.

Here’s how to sign up for Amazon Smile:

CLICK HERE – you’ll be taken directly to us! 

Follow the prompts you see.

That’s it. It’s honestly very easy. You might need to sign in, depending on your browser settings, so be sure to have your password handy.

If you somehow get lost, that’s ok! Here are some pictures that will hopefully guide you:

 

  1. Amazon Smile
  2. Amazon Smile

 

Thanks for the help! We’re awesome and we know that it’s 100% because of supporters like you.

 

AnCan’s Brains Trust Review Very Recent Seminal Prostate Cancer Work

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 4, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, July 4, 2022

If you missed our recent webinar, “Genetic and Genomic Testing The How’s, Why’s and Where’s”, you can find it at https://ancan.org/webinar-genetic-and-genomic-testing-the-hows-whys-and-wheres/

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings 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: Two supplements catch our attention this week – melatonin, and Vitamin D. And if you’re taking supplements, be sure you run them past your medical team (rd)

Topics Discussed

82-yr old multiple cancer patient needs clear direction for his metastatic PCa; recurrence brings decsion between spot RT and chemo – and the right doc; what’s the origin of a spinal lesion?; why take melatonin?; starting a drug holiday but may need a CT scan baseline; St. Louis GU med onc recommendation; drilling down on v rare testicular lesion and how to treat it; drug holiday brings surprisingly quick relief; supplementing Vit D

Chat Log

Len Sierra (to Everyone): 5:18 PM: Zytiga first approved April 28, 2011.

Peter Kafka (to Everyone): 5:41 PM: What about Dr. Dan George in N. Carolina as a possibility. He is much closer

Ben Nathanson (to Everyone): 5:41 PM: https://www.houstonmethodist.org/doctor/eleni-efstathiou/  Eleni Efstathiou, Houston Methodist (713) 441-9948

Rick Davis (to Peter Kafka): 5:43 PM: Dr. E is a better fit. She is very patient with older men. Probably not htat different in distance to Raleigh.

Julian Morales – Houston (to Everyone): 5:44 PM: A most excellent Medical Oncologist! Very personable.

Herb Geller (to Organizer(s) Only): 6:01 PM: What is the linac radiology? A medical linear accelerator (LINAC) is the device most commonly used for external beam radiation treatments for patients with cancer. It delivers high-energy x-rays or electrons to the region of the patient’s tumor. It is coupled with MRI guidance.

Rick Davis (to Everyone): 6:03 PM: 877 582 7011 – GoTo Help Line

Marc Valens (to Organizer(s) Only): 6:03 PM: Thanks.

Rick Davis (to Marc Valens): 6:07 PM: Try calling in …. (646) 749-3129 ID# 222-583-973

Rick Davis (to Everyone): 6:16 PM: https://cancerci.biomedcentral.com/articles/10.1186/s12935-020-01531-1

Herb Geller (to Organizer(s) Only): 6:20 PM: Here is the only in vivo study on melatonin that I could find:https://pubmed.ncbi.nlm.nih.gov/28644090

Julian Morales – Houston (to Everyone): 6:22 PM: Another article, The inhibitory effect of melatonin on human prostate cancer. https://biosignaling.biomedcentral.com/articles/10.1186/s12964-021-00723-0,

Rick Davis (to Everyone): 6:23 PM: Armstrong is at Duke

Rick Davis (to Everyone): 6:30 PM: https://siteman.wustl.edu/doctor/arora-vivek-md-phd/

Rick Davis (to Everyone): 6:33 PM: Picus

Martin Perrotta (Private): 6:36 PM: good evening gentlemen. Thanks for the meeting! Martin Perrotta

Herb Geller (to Everyone): 6:40 PM: There are three important tumor markers for testicular cancer: Alpha-fetoprotein (AFP) Human chorionic gonadotropin (HCG) Lactate dehydrogenase (LDH)

Gary Peters (to Everyone): 6:44 PM: Here is the recent Andrew Armstrong paper: https://www.urotoday.com/conference-highlights/asco-2022/asco-2022-prostate-cancer/137711-asco-2022-radiographic-progression-in-the-absence-of-psa-progression-in-patients-with-mhspc-post-hoc-analysis-of-arches.amp.html

Len Sierra (to Everyone): 6:59 PM: From Mt. Sinai website: The normal range of vitamin D is measured as nanograms per milliliter (ng/mL). Many experts recommend a level between 20 and 40 ng/mL.

Rick Davis (to Everyone): 7:08 PM: Vitamin D3- Hyrdoxy 25

Herb Geller (to Everyone): 7:09 PM: also known as 25-OH-vitamin D

Julian Morales – Houston (to Everyone): 7:09 PM: VITAMIN D 3 25 DIHYDROXY

David Muslin (to Everyone): 7:10 PM: Good night all

Len Sierra (to Everyone): 7:10 PM: When Vit D is ordered, they always run VITAMIN D 3,25 DIHYDROXY

Summer of Art – Dreamy Summer Sky

 

Summer of ArtSummer of Art – Dreamy Summer Sky

Registration is officially open!! We’re so so excited to announce our SECOND class in the Summer of Art Series!

Funding for this project was provided by the Health e Voices Impact Fund at the Community Foundation of New Jersey, which was funded by a contribution from Jansen Pharmaceuticals, Inc.

No painting experience? No worries! Your instructor, Hannah Garrison, has had over 7 years of teaching experience in the arts. This painting is one she’s especially excited about because we’ll be using both a paintbrush AND a toothbrush! It’s weird and we love it. 

Register here for this second Summer of Art class

When? July 21st at 8pm EST / 5pm PST

If you already registered on the priority waitlist for June’s class, then no need to register again! We already have you on the list for this class!

Register before July 10th to receive your free art supplies in time!

There will be plenty of time to ask questions and admire everyone else’s work! Hannah is always ready to answer questions about how you can make it your own. Think you might want more or less of a certain color in your painting? There’s always a solution!

Sessions are recorded and available on our Blog and YouTube Channel. And if you don’t want to be discovered, it’s fine to remain anonymous or even shut off your camera.

 

In case you didn’t make it in time for registration, Here are two things you can do:

  1. Fill out THIS FORM to register for the waitlist for August’s class. If you couldn’t register for July’s class, you’ll get priority for this one
  2. You can still join us for July’s class with your own supplies! Email Hannah@ancan.org for the link

You’ll need:

  • One soft adult toothbrush (one that you’ll never use for anything other than painting)
  • Size 6 or 8 round paint brush
  • canvas size 9in x 12in
  • Acrylic paint colors: white / orange / bright yellow / purple / pink / blue
  • water/ lots of napkins
  • extra papers / butcher paper / plastic bags to cover your work station. Protect your surface from paint if needed!

All paint manufacturers have different names for their own colors, so choose the colors you LOVE!

 

Check out our AnCan Gallery HERE to see some amazing artwork from June’s class!! You can even watch the recording for June’s “Markers and Sunflowers” class

Email Hannah@ancan.org or Alexa@ancan.org for questions 🙂 Hope to see you there!

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.

AnCan’s Brains Trust Review Very Recent Seminal Prostate Cancer Work

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 28, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, June 28, 2022

If you missed our Wednesday night webinar this week, “Genetic and Genomic Testing The How’s, Why’s and Where’s”, you can find it at https://ancan.org/webinar-genetic-and-genomic-testing-the-hows-whys-and-wheres/  We invite you to listen to 3 excellent presenters.

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings 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: AnCan recomnmends a QB GU med onc to two gents (rd)

Topics Discussed

Newbie neds to find a QB GU med onc; finding ways to save on abi; waiting to finish up radionuclide trial; Ben’s started a blog; back in biz with Pluvicto; Orgovyx Ambassador Frank has good outcome; Hawaii gent needs a GU med onc QB; Keytruda is next treatment; chemo brings results for rare type of PCa; consider Provenge before chemo

Chat Log

AnCan – rick (to Everyone): 3:18 PM: EMBr Discount for AnCan’rs …. ‘ANCAN50

Mike Yancey (to Everyone): 3:22 PM: QuickRx at 347-691-3494 for Abiraterone 1000mg for a month

Pat Martin (to Everyone): 3:24 PM: I use Expess Scripts subsid by the name of Accredo. I pay 6.60 per month. Benefit through Carpenter union

George Rovder Arlington VA (to Organizer(s) Only): 3:24 PM: Search GoodRX for discount up to 98% in your area. https://www.goodrx.com/zytiga

George Rovder Arlington VA (to Organizer(s) Only): 3:25 PM: GenitoUrinary Medical Oncologist

George Rovder Arlington VA (to Everyone): 3:25 PM: Search GoodRX for discount up to 98% in your area. https://www.goodrx.com/zytiga

AnCan – rick (to Everyone): 3:27 PM: Dr. Daniel Petrylak https://medicine.yale.edu/urology/doctors/daniel_petrylak-2.profile

Ben Nathanson (to Everyone): 3:34 PM: Nubeqa – darolutamide

AnCan – rick (to Everyone): 3:42 PM: https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar PROMISE Trial

AnCan – rick (to Everyone): 3:48 PM: Blog Registration – right sidebar https://ancan.org/blog/

Ben Nathanson (to Everyone): 3:58 PM: blog: https://bennathanson.substack.com email: bennathanson@substack.com

George Rovder Arlington VA (to Everyone): 3:59 PM: Thank you Ben.

AnCan – rick (to Everyone): 3:59 PM: Great idea …. thanks Ben

John Antonucci (to Everyone): 4:03 PM: Oh that looks good Ben thanks. pictures and all.

George Rovder Arlington VA (to Everyone): 4:16 PM: Congratulations Frank.

Bob McHugh (Private): 4:37 PM: Dr. Oh orders T level EVERY time he orders PSA. 3 month intervals.

Len Sierra (to Everyone): 4:45 PM: PSA max of 4.0 V. rare form of PCa identified by Epstein as high grade foamy gland prostatic adenocarcinoma!! Gl undeterminable but =/greater than 7 per Dr. Epstein. Has only seen 21 cases. Lung spots seen.

Pat Martin (to Everyone): 4:47 PM: That should be SOC….can’t tell you why I slipped up on being INSISTENT on getting it checked. Some of the trials showed Abbie effective for 5 yrs. I got a couple more years, so we knew it was time to check T.

Ben Nathanson (to Organizer(s) Only): 4:49 PM: If I recall right, foamy gland is itself not a bad diagnosis and not too uncommon mixed with acinar. I think what surprised Epstein is not the foamy but that it’s a high-grade foamy

Julian Morales – Houston (to Everyone): 4:51 PM: Have another meeting at 7pm CT. Talk to you all next week!

Pat Martin (to Everyone): 4:59 PM: See ya all next week…Thanks to all!!

AnCan – rick (to Everyone): 5:00 PM: MPCP https://mpcproject.org/  MPCP = metastatic prostate cancer project

Webinar: Genetic and Genomic Testing The How’s, Why’s and Where’s

Webinar: Genetic and Genomic Testing The How’s, Why’s and Where’s

On June 29th we hosted a webinar that we know you’ll love to share! Titled “Genetic and Genomic Testing The How’s, Why’s and Where’s“, you’ll get a crash course on everything genetic and genomic testing related.

 

Featuring a true dream team of experts, Pamela Munster, MD (UCSF Center for BRCA Research), Marni Brisson Tierno, PhD RN (Foundation Medicine), and Channing Paller, MD (Johns Hopkins).

 

  • When should you get tested?
  • How do you bring it up with your provider?
  • Are there any downsides?

 

Learn all this and more here:

 

Special Note: Interested in participating in the PROMISE trial? Click here to learn more and sign up.

You can also learn more about additional testing for other cancers by clicking here.

And click here to watch the video referenced by Dr. Paller during the presentation.

 

Special thanks to Janssen, Pfizer, Bayer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.

 

 

We apologize, but slides are not available for this webinar.

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