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…
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): 6:34 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
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
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.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On February 23rd, we had the pleasure of hosting Solo Arts Heal with special guest, Barbara Dyskant!
Barbara is an energetic and versatile pianist, composer, singer-songwriter, and writer who strives to use her art to warmly evoke empathy with her audience and empower them to move forward in their lives, as well as to entertain and delight. She also was caregiver for both her daughter and her husband’s cancers.
Barbara’s other passions include hiking, dancing, camping, adventuring, laughter, meeting people, reading about science, preserving the environment, good conversations, and learning from everyone. And using what she learns from her experiences and those of others to improve lives.
Watch the performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
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
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!
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.
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.
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
Next week’s meeting will be on Tue, Feb 15. 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/
Editor’s Pick: Conflict of Interest …. we are all too familiar with community docs with another agenda. But what about Center of Excellence practitioners who push to fill their trials? (rd)
Topics Discussed
Disease recurs some 10 yrs after PBRT Tx; IHT and heart issues; drug insurance appeals by your doc; general med onc reacts too slowly; clinical trial conflict of interest; ABC man caves to chemo; PSMA scans and concordance w. FDG; 3000 PSA at Dx and still undetectible; statins make a difference; once finally found, RT nukes the spot.
Chat Log
Larry Fish (to Everyone): 6:31 PM: who tells him this – what a dummy doctor
Alan Moskowitz (to Everyone): 6:38 PM: Is Embr covered by Medicare? Or is it still in clinical trial?
James Barnes (to Everyone): 6:41 PM: I received a Embr for Xmas and I am now a fan!
Len Sierra (to Everyone): 6:46 PM: Alan, as far as I can tell, it is not covered by Medicare, but one of the many guys in our group who has one should answer this question for you!
Jeff Marchi (to Everyone): 6:53 PM: I have 2 Embr devices and have gone from 8+ hot flashes a day to 0 or 1 a day
Len Sierra (to Everyone): 6:54 PM: Jeff, does Medicare cover it?
Jeff Marchi (to Everyone): 6:54 PM: not as far as I know
Alan Moskowitz (to Everyone): 6:56 PM: Jeff, thank you.
George Rovder, Arlington VA (to Everyone): 7:09 PM: Dr. Paul Leger, GU Medical Oncologist at Georgetown Lombardi Center of Excellence is solid.
Mike (to Everyone): 7:14 PM: Thank you
Ted Healy- Portland, OR. (to Everyone): 7:14 PM: Could Peter’s insurance cancel his policy if they did not approve the meds?
AnCan Herb (to Everyone): 7:24 PM: People are suggesting Germany for lutetium and I am certainly aware of it. Howard Scher says he has set people there. And the cost is not prohibitive.
Len Sierra (to Organizer(s) Only): 7:27 PM: Herb, before you do that, get a PSMA scan and an FDG scan here in the U.S. to see if you are a good candidate for Lu-177. Technetium 99M
AnCan – rick (to Organizer(s) Only): 7:29 PM: We’ve been trying to get him to Elizabeth Guancial for 12 months.
Len Sierra (to Organizer(s) Only): 7:31 PM: Rick, unfortunately, she has moved away from GU for men over to GU oncology for women. She wanted to set me up with a new PA so I went to Dr. Oh via Telehealth. I hate to lose her. I thought she was super.
AnCan – rick (to russell hoover hudson florida): 7:37 PM: Russ – Guancial no longer seeing GU men; only GU women. Len just told me. Focus on Moffitt
Jim Greenfield (to Everyone): 7:46 PM: Thanks George! Wasn’t she great?
Frank Fabish (to Everyone): 7:46 PM: Got to go. Goodnight.
John Birch (to Everyone): 7:55 PM: Thanks everyone, need to go. Keep fighting!
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).
Many of you will recognize Jake from the picture above, lying on his bed participating in our virtual meetings. This was largely Jake’s world – literally! I want to fill you in between the lines as to why AnCan and The Reluctant Brotherhood were Jake’s window to the world for the past 8 or 9 years. Jake was intensely agoraphobic – a fear of open spaces. He made no secret of this if you knew him, and occasionally mentioned it publicly in our virtual support groups. Jake was private but not in the least ashamed of his phobia.
For me personally Jake pesonified why I started this virtual endeavor 10 years pre-Covid. I recognized many people could not attend a real location – not only for physical or geographical reasons, but because they had a social disability … like, for example, agoraphobia.
In Jake’s case this was not recent. His wife, Paula, told me it was present when they dated and discussed having kids. She made it clear she wanted these future Hannams to visit the ocean and Disneyland; Jake made it clear those trips would need to be with just their mom. Jake was catholic – he held great relligious faith. So much so, that Jake told me on several occasions that his fear of death was subsumed by his fear of venturing outside his safe zone – and that safe zone shrunk the older he got. He preferred to stay at home on Xmas and Thanksgiving waiting for Paula to bring home leftovers, rather than take the 20 minute ride to his older son, JP’s house. His fear severely compromised Jake’s ability to seek the best treatment for his advanced disease. Because we loved Jake so, it frustrated many of us that a 40 minute drive to Johns Hopkins was never an option; he had to settle for mediocre local care.
I supported Jake from around 2013 (I think) when his cryotherapy failed. He was part of the Inspire UsTOO prostate cancer written forum, then started attending our Reluctant Brotherhood virtual telephone conference calls. Jake and I had our differences over the years. Unlike some of his AnCan brothers, I was smart enough to avoid politics, so Jake and I largely disagreed over treatment choices,and occasonally how I ran AnCan. That said, he never failed to support our effort, even updating a video introduction to AnCan as recently as early December that you can watch here.
Jake was our tech and social media guru. He figured out how to get AnCan on YouTube, Facebook and Twitter, He managed those sites for us, often posting content he sourced. Jake figured out how to record and publish our meetings; and, he was the first to volunteer to learn GoToWebinar to run our webinars. And many of our volunteers came to know Jake through being trained by him on these platforms. If you watched the screen when Mr. H was participating, his icon would go dark every so often for a minute or so. Most of us insiders knew that was Jake having a puff on one of his beloved cigarettes that he never gave up to his dying day. We all loved Jake dearly, even if it was not always kumbaya; he could be grumpy even irascible at times. Jake always discounted his own extensive knowledge about prostate cancer, and chose to be our behind the scenes moderator, making sure the meeting flowed well technically and muting any noisy interlopers..
Jake leaves his wife Paula, and JP and Phil, his two married, super smart boys with PhDs, one of whom travels the world for the World Bank. His first grandchild is expected next month. Jake was immensely proud of both of them, For details of Jake’s family, education and career, you can read his obituary here ; we thank Geoge Rovder for forwarding this to us.
AnCan and The Reluctant Brotherhood plan a joint virtual tribute to Jake Hannam on Sunday, Feb 20 at 6.00 pm Eastern. It will be on the RelBros Zoom platform not ours; we’ll publish a flyer in upcoming Reminders. Our sincere thanks to Peter Kafka and John Tesiberg for arranging this. This is my eulogy, so I doubt I wil take more time on Feb 20th.
And one last, very recent reminiscence to close that expresses a lot. I share this in Phil’s words from an email sent last Saturday, Jan 29, two days before Jake left us:
This is Phil (Jake’s younger son). Dad has been sleeping most of the day owing to the pain medication and hasn’t been able to use the computer since around Jan.14. He is declining more with each day. I offered to read his email today, and in reply to yours, he smiled and said “Onward and Upward” (the most he has said all day!).
Sincere thanks to you and my Dad’s other brothers at AnCan. We will keep you posted.
May Jake’s memory always be a blessing to us at AnCan Foundation and all who knew him.
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).