Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Sep 20, 2021
3 survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a
….. if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Changing your doc comes up multiple times this week – make sure you find one with whom you connect! One other takeaway – don’t test if it don’t make a difference! (rd)
Topics Discussed
Embr’s Wave – now and agin later; Testosterone returns quickl for man in 70’s; treating metastatic disease in N. Florida; Pylarify reimbursed by Medicare; Bipolar Androgen Therapy; ‘ABC’ man dives into cabazitaxel; chemo side effects; Amazon Smile pitch; more WAVE; any relationship between abi and highh clacium?; PSA fluctuatuing on abi; what’s next? – cabazitaxel or Radium 223; peripheroal neuropathy and Vit B6; switch docs to find a good fit with YOU!
Chat Log
Joe Gallo (to Everyone): 5:48 PM: Eleni Efstathiou, Houston Methodist; Paul Corn MD Anderson
Joe Gallo (to Organizer(s) Only): 6:09 PM: She could also do a preview interview via telemed Dr. E website says she will accept video visits
Rusty (to Everyone): 6:14 PM: Off to Fly Fish thanks to Reel Recovery. A dream trip to northern ME all comp. via Reel Recovery. Check it out. I believe this trip would cost $2,400 if paying your own way. 3 days and 2 nights, everything included, even a personal guide and instructor. All for guys living with cancer.
Len Sierra (to Everyone): 6:16 PM: I’ve heard of Reel Recovery, Rusty, and I’ve been wanting to do it, too. Sounds like a great program!
Herb Geller (to Everyone): 6:16 PM: Sounds great,
AnCan – rick (to Everyone): 6:21 PM: ABC Club …. Anything But Chemo
Maria Cintia (to Everyone): 6:26 PM: thanks for let me know, I call tomorrow
3 new survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=ancan
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomatitis/?r=ancan
Editor’s Pick: We discuss ‘compassionate use’ of Lu177 this week … and much more! (rd)
Topics Discussed
Complications around follow up after R2 Lu177 trial fails; Compassionate Use; Tx options after 12mo. drug holiday; Orgovyx Ambassador; rashes from both Lupron and Orgovyx; pushback on getting testosterone tests; post-RP hernia; Embr experience; peripheral neuropathy issues; doctor willing to push darolutamide; long term chemotherapy use; processing information on reports from pathologists and radiologists; BiTE AMG 509 experience; cytokine storm report
Chat Log
Jake Hannam (to Everyone): 7:39 PM: cyclophospamide with steroid
Jake Hannam (to Everyone): 8:11 PM: my oncologist recommended Viamin B6 for PIN
Jake Hannam (to Everyone): 8:46 PM: AMG 509 is a bispecific antibody that binds to two different proteins; one found on the surface of cancer cells and one on the surface of T cells in the immune system. Researchers think that AMG 509 may strengthen the immune system’s ability to fight cancer cells. It is given intravenously (by vein).
John Antonucci (to Everyone): 8:47 PM: thanks Jake
On September 1st, we had Aurora Esquela Kerscher, PhD (Associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center) offered strategies to help laypeople understand medical research articles.
Laypeople may want to read medical journals to find out the latest research in the media, including findings that might impact their care. Dr. Kerscher said it can be hard to track down and expensive to obtain papers. She said Google Scholar at https://scholar.google.com/ and PubMed.gov can lead to pertinent papers. ResearchGate.net can help link people to authors, who might be willing to send interested parties their papers.
In this presentation, Dr. Kerscher gave an anatomy of a research paper, focusing on a new study on how exercise can help prostate as well as cardiac health in men on active surveillance.
She also provided a step-by-step guide on how to quickly read/skim a research paper.
“Ask yourself – WHAT IS THE BIG QUESTION?”
–What problem is being addressed?
–Then ask yourself – Why should I care?
Her final helpful tips were:
• Read slowly, take notes as you read,
• Question assumptions, the importance of the problem.
• Write questions to track what you don’t understand. Write down and translate jargon in Google.
• Sometimes what is not in the paper is more important than what is in it.
• Is there something the authors have overlooked?
• Don’t let ideas or design details pass until you understand them.
• Do not assume the paper is correct, even if published in a prestigious peer-reviewed venue
Watch this extremely information presentation here:
To view the slides from this presentation, click here.
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.
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 August 25th, we had Shelby Hofer!
Shelby is an award-winning actress, writer and director, and the Co-director of Atlanta-based PushPush Arts (formerly PushPush Film & Theater) where she develops distinctive opportunities for artists to take risks, explore new ideas and collaborate. In addition to her noted stage and film work at PushPush, she has appeared on many stages locally, nationally, and internationally. In Atlanta, her many stage performances include seven productions at Horizon Theater, including the critically acclaimed solo comedy, Bad Dates by Theresa Rebeck. Her work also includes film, commercials, multimedia, teaching, writing, directing and stand up comedy. Her 2009-2011 performances of the solo show 101 Humiliating Stories garnered numerous awards including one of the Top 50 Shows of the Decade and a Best Actress award from Creative Loafing Atlanta in 2010.
She shared scenes from her one-woman show, High Risk, Baby! a comedy about the child within the mother, and Shelby’s personal voyage from infertility to motherhood, told from the perspective of both her 8-year-old and adult self. During the 75-minute autobiofictional ride, Lenora is on a mission, but her not-so-inner child is bursting with irreverent questions about DNA, ADD, quantum physics, boners & babies — where they come from, how they get here, and mostly, how she can get one. With hilarious and maddening advice from her sex-ed teacher, Elvis, Mr. Rogers, the mysterious Dr. Mark, and a bunch of ill-mannered “dolls,” Lenora and her Honey board a train for a wild adventure that leads to some unexpected destinations.
Watch here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=... if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.
No meeting next week in the 5th week of the month, but we have two webinars:
Managing Your Medical Team – 8.00 pm Eastern, Tuesday, 8/31 Register at https://bit.ly/3jGNN1V
A Layman’s Guide to Medical Research Language, Wednesday, 9/1 at 8.00 pm Eastern at https://www.gotomeet.me/AnswerCancer ; no pre-registration required.
Editor’s Pick: Drug holiday suddenly becomes an option ….. yes or no?? (rd)
Topics Discussed
Low PSA, hi Gleason man goes through many treatments; who to see now Dr. Alicia Morgans has moved on; considering Intermittent Hormone Therapy; recurrence rears it’s head – Dr. M has moved on; “I’m mCRPC” – what does that open up?; Provenge; carcinoembryonic marker …. for PCa?? ; handling neuropathy; one of our regualars faces shoulder surgery
Chat Log
Dell (to Organizer(s) Only): 3:09 PM: Off Eligard since Dec 2020, PSA less than 0.1 and with a rising testosterone. Last week the TS was 369 and this was the first increase in PSA to 0.5. Just looking to know who is the new recommendation for Chicagoland (Northwestern) with Dr Morgans gone.
Joe Gallo (to Everyone): 3:12 PM: A drop-in presentation sponsored by the AS group. Open to all on a drop in basis at Barniskis. First Wednesday program scheduled for 8-9:30 p.m Eastern on September 1, 2021 is titled “A Layperson’s Guide to Reading Medical Research” Aurora Esquela Kerscher, PhD, is an associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center, Eastern Virginia Medical School in Norfolk, Virginia.
Larry Fish (to Everyone): 3:15 PM: where those spots all on Prostate – or had it already spread. So why radical prost…
Joe Gallo (to Everyone): 3:16 PM: Also a webinar Webinar: Managing Your Medical Team on Tuesday August 31st at 8:00-9:30 pm ET. Register now: https://bit.ly/3jGNN1V Larry Fish (to Everyone): 3:20 PM: chemo?
Herb Geller (to Everyone): 3:20 PM: Genetics?
Paul Freda (to Everyone): 3:20 PM: What was the name of that Firmagon oral substitute ? Anyone ?
Herb Geller (to Everyone): 3:20 PM: Orgovyx
John Antonucci (to Everyone): 3:21 PM: AKA relugolix
Joe Gallo (to Everyone): 3:21 PM: Daily pill
Stan Friedman (to Everyone): 3:21 PM: genetic testing?
Larry Fish (to Everyone): 3:23 PM: So what is he doing now – exaCTLY? what trials? chemos? ADL? exercise?
AnCan – rick (to Organizer(s) Only): 3:27 PM: Kelly may be good BUT how come no chemo???
Larry Fish (to Everyone): 3:28 PM: wow – pretty knowledgeable! how is his Quality of life now?
Pat Martin (to Everyone): 4:05 PM: Any doubling time
AnCan – rick (to Everyone): 4:07 PM: Pylarify 18F DcfPyl PSMA test. Made by Lantheus …. https://pylarify.com
Pat Martin (to Everyone): 4:12 PM: I’m sorry for my ignorance…in the Northwest we have a Tri-Cities but no Quad-Cities. What are they?
Herb Geller (to Everyone): 4:13 PM: I just looked it up. It is a group of cities on the Illinois-Iowa borde
Pat Martin (to Everyone): 4:14 PM: Thanks
Les Schjelderup (to Everyone): 4:15 PM: That is where I live also.
Pat Martin (to Everyone): 4:19 PM: My experience…25 months of ADT Lupron and Abiraterone. Had a vacation of several months. PSADT was 1.5 months and had an Axuminn scan to pinpoint the problems. Then went back to ADT, Eligard and Abi. Way fewer side effects and better energy.
John Ivory (to Everyone): 4:19 PM: Thanks Pat
Jake Hannam (to Organizer(s) Only): 4:35 PM: oral chemo? cyclophosphamide? not a taxane – mght work for him with lower PSA than mine
Jim Ward (to Everyone): 4:42 PM: Can someone spell the name of the report that was referenced, beginning with a “k”?
John Antonucci (to Everyone): 4:43 PM: caris
Jim Ward (to Everyone): 4:43 PM: Got it – thanks!
AnCan – rick (to Everyone): 4:43 PM: Caris ……. it’s a competitor to FMI
Paul Freda (to Everyone): 4:47 PM: How to spell lutecian ? Anyone ?
Len Sierra (to Everyone): 4:47 PM: Lutetium
Herb Geller (to Everyone): 5:04 PM: I gotta go soon
Stephen Saft (to Everyone): 5:07 PM: I am 6’5″ and 225lbs and ask about this all the time. It is mostly ignored by the Drs i have spoken to. Doesn’t make sense to me.
