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

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.

 

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

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

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.

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

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