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

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

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

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

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

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

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

Topics Discussed

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

Chat Log

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Solo Arts Heal with Barbara Dyskant

Solo Arts Heal with Barbara Dyskant

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) collaborate every 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, Mar 1, 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.

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

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

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 7, 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

If you missed Dr. Rachel Rubin’s excellent webinar on Intimacy and Sexual Dysfunction, watch the recording at https://ancan.org/webinar-cancer-chronic-illness-and-intimacy/

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/

To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/

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

Joe Gallo (to Everyone): 6:33 PM: https://embrlabs.com Embr Wave 2

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!

Chick Lindsay (to Everyone): 8:05 PM: Thanks everyone.

AnCan Herb (to Everyone): 8:10 PM: Osprey and Condor

AnCan Herb (to Everyone): 8:16 PM: Sorry, I got to go tonight. See you next week.

Jim Greenfield (to Everyone): 8:27 PM: https://Filmatelevenband.com (Jimmy Greenfield’s band) Check that calendar and come throw some tomatoes.

George Rovder, Arlington VA (to Everyone): 8:30 PM: Thanks Rick and all.

Ted Healy- Portland, OR. (to Everyone): 8:35 PM: Thanks for all you folks do!