Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 19, 2022
Are you a Vet ? – Join AnCan’s new Vet’s group to help best navigate your healthcare. It’s not about your disease – it’s about getting the best care, bennies and allowances. So please invite other Vets and Care Partners – no matter gender, condtion, or where they get care. Read more at https://ancan.org/veterans/ . Next meeting Thu, Sep 22 , free, drop-in – https://www.gotomeet.me/AnswerCancer
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Mental health is much on AnCan’s mind right now. It’s highlighted this week by the anxiety suffered by an older gent. (rd)
Topics Discussed
Possible recurrence needs more skilled provider; denovo Mx w. no primary inervention requires a GU med onc; early report post testicualr surgery; short report on NY conference; PIK3CA; MSI-H makes gent a candidate for Keytruda; Gen. Joel needs a new QB; mice and purple tomatoes; treating gynacomastia but how much RT??; slow, creeping PSA gives rise to anxiety in older gent; is spinal pain cancer, asks long term, younger Mx gent?; Pluvicto only holds so what’s next – Jevtana?
Chat Log
Jeff Marchi, San Francisco (Private): 5:07 PM: my brother gene has been given Casodex 2 days before his first Lupron shot. isn’t 14 days the standard?
AnCan – rick (to Jeff Marchi, San Francisco): 5:10 PM: 10-15 days
Jeff Marchi, San Francisco (Private): 5:11 PM: thanks
Herbert Geller (to Everyone): 5:20 PM: Genitourinary Medical Oncologist They deal with prostate, bladder, etc.
Joe Gallo (to Organizer(s) Only): 5:21 PM: Should have had an MRI for a targeted rather than a standard BX.
Len Sierra (to Organizer(s) Only): 5:22 PM: True, Joe.
Pat Martin (to Everyone): 5:25 PM: Genetic testing?
Len Sierra (to Organizer(s) Only): 5:26 PM: This is unbelievable. At the UT website for GU oncology this is what they say: Our team treats the following conditions: (Hint – No mention of Prostate Cancer) Bladder Kidney Penis Testis Ureter Urethra
Herbert Geller (to Organizer(s) Only): 5:26 PM: Great!
George Rovder, Arlington VA (to Everyone): 6:36 PM: https://www.inova.org/doctors/jeanny-b-aragon-ching-md
Mike Yancey (to Organizer(s) Only): 6:44 PM: Early morning doc appointment, so gotta run. Thanks for another great call and discussion AnCan – rick (to George Rovder, Arlington VA): 6:45 PM: If I had to see a doc at Innova, it would be her. George Rovder, Arlington VA (to Everyone): 6:46 PM: Thanks Rick. Good if it’s a go with Dr. E. If not she’s local and more experienced than Joshua Allen. AnCan – rick (to George Rovder, Arlington VA): 6:46 PM: It’s always tough to switch docs within a practice. George Rovder, Arlington VA (Private): 6:47 PM: Of course. Richard Cramond – Oakton, VA (to Everyone): 7:06 PM: I have to go David Muslin (to Everyone): 7:16 PM: What about Dr. O? Julian Morales – Houston (to Everyone): 7:16 PM: Need to drop off. These discussions are only getting better!!! Ben Nathanson (to Organizer(s) Only): 7:18 PM: Sorry, must go — see you all next week Joe Gallo (to Everyone): 7:21 PM: David. 3 sessions 12Gy Mark Thompson (to Everyone): 7:38 PM: Thank you all. George Rovder, Arlington VA (to Everyone): 7:39 PM: Happy New Year. George Rovder, Arlington VA (to Everyone): 7:39 PM: Thanks to all.
Summer of Art – September 15th Class – Oil Pastels
On September 15th, Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group) brought her magic back to AnCan. We made different types of Owls with oil pastels, and in keeping true to the education part in our tagline (Advocacy Support Education), we learned a lot about Owls. You can click here to learn some of the facts we went over! We encourage you to name your owl, and make it as colorful as you’d like!
What you will need:
Oil Pastels
Paper
Pastel Blender
Paper Towel/Napkin
Watch the class here:
Funding for this project was provided by the HealtheVoices Impact Fund at the Community Foundation of New Jersey, which was funded by a contribution from Janssen Pharmaceuticals, Inc.
Would you like your art featured in the AnCan Art Gallery? please email me at alexa (at) rickd13.sg-host.com!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 13, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: No Provenge with autoimmune disease — but how about vitiligo? Dr. Larry Fong himself weighs in. (bn)
Topics Discussed
Hyperbaric chamber for radiation cystitis; docs inadequately warn gay man of prostatectomy side effects; years after prostatectomy, incontinence reappears; Provenge OK with vitiligo?; fourth and worst-yet chemo; dehydration to avoid leakage backfires at radiation simulation; avoiding leakage at work; expanded access to end for Pluvicto — no more free drug; which Medicare plan?; paused Keytruda treatments back on track; dehydration makes liquid biopsy fail; message from Dr. Larry Fong: no known Provenge problem with vitiligo
Len Sierra (to Everyone): 6:32 PM: Climacturia after definitive treatment of prostate cancerResults: Overall 412 surveys were returned and available for analysis, and of these respondents 75.2% were sexually active or experiencing orgasms. Climacturia was reported by 22.6% of these respondents, and by 28.3%, 5.2% and 28.6% of those treated with surgery, radiation, or both, respectively (p <0.001).
Bob McHugh (to Everyone): 6:37 PM: Had a Pylarify scan in May at 0.5.Showed three very small lesions which we treated with five rounds of Tomotherapy.
Bob McHugh (to Everyone): 6:40 PM: Very candidly, I haven’t had a erection since my surgery in 2015. My girlfriend said, “Bob, I don’t care if you ever have an erection again.” Changed my life!
John Antonucci–CT (to Everyone): 6:40 PM: Nothing better than a supportive partner, huh?
Julian Morales – Houston (to Everyone): 6:41 PM: you got that right Dr John
Julian Morales – Houston (to Everyone): 6:51 PM: The file will start with ChatLog Ancan Barniskis Room followed with the date of the meeting. It is an RTF file.
Bob McHugh (to Everyone): 7:16 PM: My surgeon gave me a lidocane cream. HJelpful.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 5, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Great input this week from Advisory Board Member, Richard Wassersug PhD. And right at he end – maybe a touch of African Waterways – ‘De Nile’! (rd)
Topics Discussed
Stick or twist on RT for longtime recurrent older Gent; a similar Peer Survivor comments; man with cribriform intraductal faces immediate recurrence; starting Prolia; leg pains from ADT; Theraworx; looking at IHT; steady as she goes; MSI-H man asks about Immunex test; abi added to treatment but maybe daro would work; is Clinical Trial failing or succeeding?; aggressive disease recurs on Pylarify 3yrs after Tx ends – but man asks if it’s a false positive.
Chat Log
Richard Wassersug (to Everyone): 5:18 PM: Or there were only 6 cores taken
JEFFERSON DURYEE (to Everyone): 7:00 PM: OP GU PROSTATE STUDY IGUP20133 ETRUMADENT ZIMBERELIMAB DOCETAXEL PETER JAY VAN VELDHUIZEN,MD MY CURRENT CLINICAL TRIAL TEN MONTHS THEY ADDED 3 MORE MONTHS YR OLD ORCHIECTOMY A YR A GO PSA HAS RISEN TO 7.006 TESTERONE LESS THAN 5*
Frank Fabish – Columbus OH (to Everyone): 7:04 PM: Got to go guys. Thanks for listening.
Thomas Jacobsen – CO (to Everyone): 7:05 PM: Thanks everyone. Gotta go.
Julian Morales – Houston (to Everyone): 7:07 PM: Have to drop. Another great discussion. Glad I could contribute! See you next week!
Richard Wassersug (to Everyone): 7:23 PM: Sorry all. I have to go.
Bob G. Philadelphia (to Everyone): 7:25 PM: Time for me to go. Thanks.
Ben Nathanson (to Everyone): 7:27 PM: Good night, George – good to see you again
George Rovder Arlington VA (to Everyone): 7:27 PM: Good night friends. Stay well.
JEFFERSON DURYEE (Private): 7:31 PM: TY AND GOOD NIGHT
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!
Our guest for August was William Wonders III.
William grew up in Brooklyn, NY. He attended Nyack College from 1998-2001. William secretly began writing and shooting video during this time. It all came to a head in 2009 when William decided to enroll at New York Film Academy in Manhattan, NY. He did this after starting an afterschool program to teach film and video to at risk youth. William has directed a number of short films.
His short film, “Fear Itself”, premiered in Florida, California, Mexico, Atlanta and New Jersey film festivals. William owns his own production company, so he can write and produce films, inspiring everyone that sees them. William’s latest project “Fixing Grandma” has been picked up by Amazon Prime. William is currently working on documentary about the current state of health of Black Men in America.
William presented an original piece about the paradigm shift he went through to produce content that addresses the disparities in the health of the black community.
Watch here:
Special thanks to John Ivory for filling in for Rick Davis. We appreciate you!
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
On August 31st, we had an incredible webinar tilted Mental Health and Multiple Sclerosis. Featuring Dr. Lauren Strober (Senior research scientist in the Center for Neuropsychology & Neuroscience Research at Kessler Foundation and assistant professor of Physical Medicine & Rehabilitation at Rutgers University New Jersey Medical School), Carly Podzikowski, and Kim Stroeh for tips and tricks on how to “feel” through the emotions that come and go with the crazy ride that is Multiple Sclerosis.
You might even feel like you’re always getting a “new normal”. Sometimes it can feel like a wild roller coaster ride if you’re not prepared. Let us offer a little guidance on how to go with the flow and how to change course when you need to. We’ll be talking about emotions and grief throughout different stages of an MS diagnosis – whether you were just diagnosed last week or last decade (and beyond!).
Learning how to deal with all aspects of this illness is a challenge, but we’ll walk you through some adaptive strategies.
We had a fascinating webinar on August 29th, a debate on whether transrectal biopsies or transperineal biopsies are better for prostate cancer patients.
Don’t know the difference? No problem, this webinar will give lots of food for thought, and plenty to take back to the doctor’s office with you!
Deborah Kaye, MD, Assistant Professor Duke University Division of Urology and Duke Clinical Research Institute Margolis Policy Center, argued for transrectal biopsies. Arvin George, MD, a urologic surgeon specializing in the diagnosis and management of genitourinary cancers at University of Michigan Health, argued for transperineal procedures.
We have been reading all your feedback and taking it to heart, you want more information on this topic. To quote Rick Davis- “we hear ya!!”, and we are working on it.
Watch here:
Special thanks to Janssen, Pfizer, Bayer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
Summer of Art – August 30 Class – Watercolor Pencils
On August 30th, we had so much fun once again with our very own Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group). Hannah taught us in the ins and outs of watercolor pencils, and also showed how basic scribbling can create beautiful things!
Funding for this project was provided by the HealtheVoices Impact Fund at the Community Foundation of New Jersey, which was funded by a contribution from Janssen Pharmaceuticals, Inc.
Would you like your art featured in the AnCan Art Gallery? please email me at alexa (at) rickd13.sg-host.com!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 23, 2022
AnCan’s upcoming webinar “Prostate cancer biopsies: the great debate” takes on a hot topic for anyone planning a biopsy: Should it be transrectal or transperineal? Learn what these techniques are and why the decision matters. Register at https://bit.ly/3OJ9Mmu
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Refining the fine print — making changes when you’re handed paperwork to sign (bn)
Topics Discussed
Recommending a Fox Chase doc for NJ first-timer with troubling PSMA-PET; bicyclist sees two PSA rises after radiation — time to worry?; metastasis nine years after prostatectomy, seeking a new California doc; shaken by PSA rise after salvage radiation and en route to medonc; chemo round three — “it sucks but it works” ; testicular “barrier” complicates treatment for rare metastasis to a testicle; 6 months undetectable PSA, looking forward to a holiday; recovering from infection after losing 25 pounds, and pondering a T-cell trial; fantastic Pluvicto response, hoping for additional treatments; diarrhea and fatigue coming off abi — was prednisone taper too fast?; Keytruda treatments hit roadblock after blood test; nurses look askance when he carefully reads — and modifies — a stack of paperwork before signing.
Chat Log
Bob G. Philadelphia (to Everyone): 6:01 PM: Can’t stay but wanted to let you all know about a full day virtual series of classes from Abramson Cancer Center at Penn, where I go. Titled “Focus on Prostate Cancer” Friday, October 21, 2022 7:30 am – 4:00 pm EDT Free, though they ask for a small donation. https://www.med.upenn.edu/prostate2022/agenda.html
Richie in LA (to Everyone): 6:12 PM: Have severe thunderstorms in my area right now, so if I get kicked off for loss of electricity, I will try and log back in ASAP. Thanks
Peter Kafka – MN (to Everyone): 6:14 PM: Richie: If your internet goes out you can join by phone if that doesn’t get kicked out.
Richie in LA (to Everyone): 6:14 PM: Thanks Larry Fish (to Everyone): 6:20 PM: from nadir … how often PSA rests ..how long was it rising up to now – ? why no action?
Bob McHugh (to Everyone): 6:26 PM: Dan Geynisman at Fox Chase …
Joe Gallo (to Everyone): 6:43 PM: joeg@rickd13.sg-host.com I am 4+5
Julian Morales – Houston (to Everyone): 6:47 PM: Genitourinary (GU): Pertaining to the genital and urinary systems.
Julian Morales – Houston (to Everyone): 6:50 PM: FYI – These meetings are archived for viewing at later times.
Jeff in CA (to Everyone): 7:23 PM: Thanks all. Have another meeting startiing now. Much appreciation for your observations and feedback.
Joe Gallo (to Everyone): 7:39 PM: The nuclear doc for PSMA I mentioned at Fox Chase Yi Li, MD, MSc.
Joe Gallo (to Everyone): 7:43 PM: better name reference Jian Q. (Michael) Yu, MD, FACNM, FRCPC Chief, Department of Diagnostic Imaging, Nuclear Medicine and PET
John Vandenberg (to Everyone): 7:44 PM: thanks – i’ll ask my primary doc next week
Ben Nathanson (to AnCan Barniskis Room): 7:49 PM: Hope surgery went well!
AnCan Barniskis Room (Private): 7:50 PM: TxBen … all good and a little advocating for myself too
Julian Morales – Houston (to Everyone): 7:58 PM: I read my mortgage papers and was accused of being a lawyer!
Pat Martin (to Everyone): 8:08 PM: How long does it take to run through your system?
Jim Ward (to Everyone): 8:11 PM: Gotta run. Congrats on the successul procedure, Rick!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Aug 15, 2022
Check out our NEW AnCan Veterans Support Group – all conditions, all genders … with the purpose of helping Vets navigate their healthcare, benefits, and disabilties no matter their Provider! https://ancan.org/veterans/ . Next meeting Aug 26 @ 8.00 pm Eastern in the Barniskis Room. Free & drop-in.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Gynacomastia rarely gets discussed, so we put that right this week (rd)
Topics Discussed
Experience with Pluvicto; just started Keytruda/pembrolizumab; genomic testing can fall out of network without patient guidance; determining the low threshold for PSMA imaging; PSMA imaging cost; chemo may be working but considering next treatment; more Pluvicto experience; are occasional intense fevers associated with AUS?; how to deal with gynacomastia; doc misses sepsis and participant hospitalized; switching docs; holding steady; staph incfection lands another Gents in hospital; is PALB2 actionable; treating depression and anxiety; 3rd chemo session brings doc discussing what’s next; uretral stent removal delays Pluvicto start; treatment selction for older Gent with slow recurrence over many years.
Chat Log
Pat Martin (to Everyone): 8:11 PM: what is Provicto?
Paul Freda Lake Worth FL (to Everyone): 8:13 PM: Yes, what is Provicto ??
George Rovder Arlington VA (to Everyone): 8:13 PM: Above is link to Pluvicto
Pat Martin (to Everyone): 8:13 PM: Thanks
Alan Babcock (to Everyone): 5:46 PM: I am confused. My PSA is 0.21 and Dr. Wong & Dr. Geynisman fron Fox Chase said I cannot wait for radiation and ADT.
Jeff Marchi, San Francisco (to Everyone): 5:47 PM: PSA IS ONLY ONE FACTOR; how much cancer, has it spread
Alan Babcock (to Everyone): 5:50 PM: How much does a PSMA cost?
Alan Babcock (to Everyone): 6:03 PM: I must leave. Thank you for all the information.
Herb Geller (to Everyone): 6:25 PM: Nystatin
Bob G. Philadelphia (to Everyone): 6:25 PM: Nystatin powder
Herb Geller (to Everyone): 6:25 PM: Its and antifungal agent
Jimmy Greenfield (to Everyone): 6:28 PM: Thanks guys
George A Southiere Jr (to Everyone): 6:37 PM: sorry to hear Linda. Hang in there
Jeff Preston (to Everyone): 7:02 PM: Thanks to all tonight, great to be with you.
George A Southiere Jr (to Everyone): 7:03 PM: Goodnight all! good seeing you all
John Antonucci–CT (to Everyone): 7:07 PM: There’s a PALB2 website/interest group. https://palb2.org. Mostly breast Ca
Julian Morales – Houston (to Everyone): 7:10 PM: Need to leave – I will Dr E your best and a bottle of Greek Olive Oil! Thanks for the great converstation as always.
John Antonucci–CT (to Everyone): 7:11 PM: gtg goodnight
George Rovder Arlington VA (Private): 7:11 PM: How much B6 daily Rick?
Richard Cramond, Oakton, VA (to Everyone): 7:15 PM: Good night
ALFRED LATIMER (to Everyone): 7:16 PM: Another informative meeting. Must go . Good night
Glenn -Minnesota (to Everyone): 7:22 PM: Thanks for the conversation and suggestions. Good night
Carlos Huerta (to Everyone): 7:32 PM: thanks for the input.
