Special Presentation: Novel Strategies to Treat Prostate Cancer

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, Feb 21, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 21, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 21, 2022

AnCan was honored by the GU ASCO 2022 Conference last week, who accepted 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 Tue, March 1. 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: Both new men this week are under 60; listen to their stories! (rd)

Topics Discussed

Younger man with challenging disease tries to find best Tx; lung nodules pose issue for another younger man; side effects of Lu177 PSMA; germline vs Somatic testing and teh PROMISE trial (link below); IHT brings some relief; survival stats; is joint pain a comorbidity of ADT?; bone density; low T? Get a complete testosterone work up.

Chat Log

George Rovder Arlington VA (to Everyone): 6:12 PM: rd@ancan.org

John Ivory (to Everyone): 6:15 PM: Not sure if Brett can see the chat (if you’re on phone or computer). We have an Under 60 group at which we’d love to see you: https://ancan.org/event/under-60-advanced-prostate-cancer-2/all/

John Ivory (to Everyone): 6:34 PM: PUBLIC SERVICE ANNOUNCEMENT: Our guest this month for Solo Arts Heal has played a role that will be familiar to many of you: a family caregiver. Barbara Dyskant cared for a former member of this group whom some of you might remember, her husband Barry Miller (who unfortunately passed away in 2020). Earlier, she cared for her daughter who survived two years on chemo for leukemia (now undetectable). She’ll be playing original songs; Rick Davis will host. Please join us at 10:30 p.m. ET/7:30 p.m. PT https://themarsh.org/soloartsheal/

Paul Freda  Florida (Private): 6:34 PM: Ric  Tall Allen has a new post that says there is data that Vitamin D6 can CAUSE  make cancer MORE likely. Very unusual. You might want to check that out. … JFYI … Saw it on Healthunlocked ……                            “Actually, those toxicities are quite common. High Vitamin D pulls calcium out of bones and causes osteoporosis. We just saw, in the D-Health trial, there was a 24% increase in cancer among those taking high amounts of Vitamin D for years.”

AnCan – rick (to Paul Freda  Florida): 6:39 PM: D3 or B6 Paul

Paul Freda  Florida (Private): 6:41 PM: I believe it said just Vitamin D. He added that some dairy and a bit of sunlight is all you need to avoid ricketts.

John Ivory (to Organizer(s) Only): 6:41 PM: https://www.inova.org/doctors/jeanny-b-aragon-ching-md

Paul Freda  Florida (Private): 6:43 PM: Like most things, there are limits. For example, I believe my kidney stone last year was due to my excessive consumption of Vitamin C. I follow Dr Linus Pawling’s advice.  Just learned about that danger recently.

AnCan – rick (to Paul Freda  Florida): 6:43 PM: Not really new news, Paul. You have to regulate your D intake to lep it at the right leve. I don’t read Health Unlocked. Not sure thre is anything here that is new to us …… check with Len.  Suggest you bring it up …

Paul Freda  Florida (Private): 6:45 PM: Reluctant to put a scare in to everyone with so little information. One study.

AnCan – rick (to Paul Freda  Florida): 6:49 PM: allow the moderators to decide ….

AnCan – rick (to Everyone): 6:59 PM: Sean Collins at Georgetown

George Rovder Arlington VA (to Everyone): 7:00 PM: Dr. Sean Collins Website:

George Rovder Arlington VA (to Everyone): 7:01 PM: https://www.medstarhealth.org/doctors/sean-philip-collins-md-phd

Frank Fabish (to Everyone): 7:02 PM: Guys I need to cut out early. Early appt tomorrow

Len Sierra (to Everyone): 7:22 PM: PROMISE trial: https://clinicaltrials.gov/ct2/show/NCT04995198

George Rodriguez (to Everyone): 7:27 PM: what level does your PSA need to be in order to get a PSMA?

Peter Kafka (to Organizer(s) Only): 7:29 PM: Best to have a PSA of at least 0.5

Peter Kafka (to Everyone): 7:29 PM: Best to have a PSA of at least 0.5 for minimum PSMA reading.

AnCan – rick (to Everyone): 7:30 PM: George – probably 0.65 or higher.  Sounds like Tony got it early. It may work but to be sure >0.65

George Rodriguez (Private): 7:30 PM: thanks

AnCan – rick (to Everyone): 7:31 PM: Jeff – some more info from PCF https://www.pcf.org/c/the-promise-of-studying-inherited-genes/

Pat Martin (to Everyone): 7:32 PM: I’ve been on and off Lupron and Eligard for the last 8 years.  Zytiga for 50 months.

Vic (to Everyone): 7:32 PM: https://prostatecancerpromise.org

AnCan – rick (to Everyone): 7:32 PM: Thanks Vic ….

George Rodriguez (to Everyone): 7:33 PM: I’m on Eligard, what’s the difference with Zytiga?

Julian Morales-Houston (to Everyone): 7:33 PM: I am on Zytiga, 1000 mg/day, for 4 months

Vic (to Everyone): 7:33 PM: Eligard is ADT and Zytiga I’d

Vic (to Everyone): 7:35 PM: Zytiga is 2nd generation hormone therapy

Pat Martin (to Everyone): 7:35 PM: How long has Sylvester been fighting the beast?

Len Sierra (to Everyone): 7:37 PM: Sylvester had low risk PCa and I believe he is cured.

Sylvester Mann (to Everyone): 7:37 PM: twenty-two years.

AnCan – rick (to Pat Martin): 7:37 PM: Sylvester nailed his disease with RT on recurrence and has durable remission

Len Sierra (to Everyone): 7:38 PM: Yay Sylvester!!

John Ivory (to Organizer(s) Only): 7:39 PM: If you haven’t exercised in a while, you’re also likely to have joint pain until you’re stretched out a bit

John Ivory (to Everyone): 7:39 PM: If you haven’t exercised in a while, you’re also likely to have joint pain until you’re stretched out a bit

Julian Morales-Houston (to Everyone): 7:41 PM: ADT = Androgen Deprivation Therapy

John Ivory (to Organizer(s) Only): 7:44 PM: Wouldn’t Men Speaking Freely be good for Tony The Boss?

John Ivory (to Everyone): 7:53 PM: https://ancan.org/men-speaking-freely/https://ancan.org/men-speaking-freely/

Rich Jackson (to Everyone): 7:54 PM: Next ‘Speaking Freely’ will be March 17, 8pm EST. To connect, use the same link as got you here. Non-Technical call, men only, any serious disease (mostly prostate cancer men show up).

Rich Jackson (to Everyone): 7:56 PM: Thank you John Ivory.

Pat Martin (to Everyone): 7:57 PM: Doesn’t BAT encourage testosterone in cycle?

Chris Carrino (to Everyone): 7:58 PM: Any one try the new Orgovyx ADT? First timer. I’ll be up and running next week with video/audio

John Ivory (to Everyone): 7:58 PM: Sorry Rich–didn’t see you among all the faces here–you would have better described your meeting!

AnCan – rick (to Everyone): 7:59 PM: Chris – we have several men on Orgovyx tonight

John Ivory (to Everyone): 7:59 PM: @Chris Carrino–I’ve been on Orgovyx for a year. Has worked as well as leuprolide and no painful injections

Joe Gallo (to Everyone): 7:59 PM: Hi Chris, I  started on Orgovyx last year.

Peter Kafka (to Everyone): 8:00 PM: A number of us have tried and still using Orgovyx.  Join in at the next meeting and discuss.  Next meeting will be Tuesday, March 1st at 6 pm Eastern time.

John Ivory (to Everyone): 8:00 PM: Since I mentioned it, Here’s Jimmy G’s performance on Solo Arts Heal. Highly recommended. https://www.youtube.com/watch?v=vp1xBkc3am8

Chris Carrino (to Everyone): 8:01 PM: Mine apparently stopped working with rapid rise in T. Put me on Fermigon

Rich Jackson (to Everyone): 8:01 PM: Thought you did an outstanding job. Nothing for me to add other than the date.

John Ivory (to Everyone): 8:03 PM: I have zero testosterone. That’s why I called on you, Jimmy. 😀

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 21, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 15, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 15, 2022

AnCan will remember our beloved Moderator, Tech Guru, FB Manager and buddy, Jake Hannam on Feb 20 @ 6pm EST. All are welcome – drop-in. NB It will be on Zoom not our virtual rooms – Zoom link: https://zoom.us/j/6516459299

AnCan was honored by the GU ASCO 2022 Conference this week, who accepted our abstract and poster. You can see just how effective our support groups(and recordings!) truly are: https://ancan.org/ancan-recognized-by-gu-asco22-for-peer-led-support-groups/

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, Feb 21. 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: Many watching this video live with disease anxiety – let’s talk about it. This will be a 2022 focus for AnCan (rd)

Topics Discussed

Second guessing your primary QB … tiime for a change?; learning about chemo; Dr.E hits another home run; where to get RT close to home – hypofractions?; diet and nutrition; let’s talk anxiety??; laxatives during chemo; is sugar really that bad …?; heart related issues during treatment; calcium levels and serum calcium. Along the way we also discuss leg cramps, opiates and sexual dysfunction.

Chat Log

AnCan – rick (to Everyone): 4:08 PM: Jake GRHS Virtual Tribute https://zoom.us/j/6516459299

AnCan – rick (to Everyone): 4:08 PM: Sun Feb 20 6.00 pm

AnCan – rick (to Organizer(s) Only): 4:17 PM: Another low PSA G9

AnCan – rick (to Organizer(s) Only): 4:28 PM: He was CSPC for a short ime – he got Provenge in 2016, 5 yrs ago

Carl Forman (Private): 4:31 PM: Dr Wyse at NYU Langone is his second opinion Carl Forman (Private): 4:36 PM: Sorry for the misspelling for Dr David Wise

Pat Martin (to Everyone): 5:00 PM: One big help when going thru radiation was getting nutritionist involved to help with digestive problems

Len Sierra (to Everyone): 5:01 PM: Good suggestion, Pat!

Chick Lindsay (to Everyone): 5:14 PM: Thanks for the help on selecting radiation oncologist. Most helpful.

Stan Friedman – Stamford, CT (to Everyone): 5:25 PM: sorry. I need to leave. stay safe.

Pat Martin (to Everyone): 5:28 PM: Flax meal…with a lot of water. Dried cherries is great.

Bill Bradford (to Everyone): 5:41 PM: Great meeting guys – thanks for sharing. I have to leave a bit early.

NYU Langone Health Study finds disproportionate Black and LatinX representation in Prostate Cancer Communities

NYU Langone Health Study finds disproportionate Black and LatinX representation in Prostate Cancer Communities

This article by Howard Wolinsky summarizes a study by NYU Langone Health in New York City. The study is about the disproportionate prostate cancer representation in LatinX and Black communities in social media presence. Stacy Loeb, leader of the study and urologist at NYU Langone Health and Manhattan Veterans Affairs, stated “Online information is increasingly used by patients and their families but falls short in terms of quality, readability, and diversity of representation.”

Read Howard’s full article here: https://www.medscape.com/viewarticle/968371#vp_1

 

Howard Wolinsky is an AnCan Moderator and Advisory Board Member. Thank you, Howard, for spotlighting this important topic of minority representation in the prostate cancer community. 

AnCan Recognized by GU ASCO22 For Peer Led Support Groups

AnCan Recognized by GU ASCO22 For Peer Led Support Groups

AnCan Recognized by GU ASCO22 For Peer Led Support Groups

 

AnCan Foundation is honored to announce its Abstract #58: Evaluating The Contribution of Virtual Peer-Led Support to Comprehensive Prostate Cancer (PCa) Care: The AnCan Experience together with a virtual poster has been selected for the ASCO Genitourinary Cancers Symposium, Feb 17-19, 2022 in San Francisco. DOI: 10.1200/JCO.2022.40.6_suppl.058

AnCan’s founder, Rick Davis, innovated virtual peer-led support groups back in 2010. He recognized the potential of peer advice as the best information a patient could find. AnCan’s 2021 research confirms what Rick knew intuitively.

Neuroscientist Herb Geller PhD, the abstract’s lead author, highlighted the following key research findings, 

“Our research indicates that peer-led groups don’t just improve quality of life around the things we can control like diet, exercise and stress. Eighty percent of our participants feel the groups make them better advocates for themselves, and well over 60% take information gleaned back to their healthcare teams.”

While this poster is featured in the Advanced Prostate Cancer track on Feb 17, AnCan is proud of its work to establish the stature of the low risk Active Surveillance (AS) protocol and includes its AS findings. 

Co-author and nationally recognized AS Advocate, Howard Wolinsky, said:

“Sixty eight percent of our AS participants told us the Groups made them better advocates and 27% reported lower levels of anxiety – that’s a major difference. Active surveillance is the Rodney Dangerfield of prostate cancer – including our study at GU ASCO recognizes AS patients”

Rick Davis, founder of AnCan and a prostate cancer survivor, says the research demonstrates the power of patient communities on outcomes:

“I realized the power of peer-led support groups from my own treatment. Bringing them to a virtual platform 10 years before anyone had ever heard of COVID-19 and Zoom meetings, made peer support available to those compromised by geographical, physical and social issues. Recognition by GU ASCO is a big step in legitimizing AnCan’s work for all peer-led support.”

 

View full press release here,

View the poster here.

For information on our peer-led video chat VIRTUAL SUPPORT GROUPS, click here.

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