Hi-Risk/Recurrent/Advanced PCa Video Chat, May 24, 2022
Two upcoming events to mention first …..
Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer with Drs. Stacy Loeb (NYU) and Justin Gregg, Tue, May 31 @ 8.00 pm Eastern. Register at https://register.gotowebinar.com/regi…
It Ain’t Your Grandpa’s BPH with Dr. Steve Kaplan (Mt. Sinai, NYC) Wed, June 1 at 8.00 pm No registration required – just join live https://www.gotomeet.me/AnswerCancer We’ll be talking all issues around frequency, urgency, nocturia and more. Send your questions to joeg@ancan.org
AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@ancan.org.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly 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: Testosterone lags far behind in recovery – what to do? (rd)
Topics Discussed
Young denovo Mx man with family history; testosterone stays low long after Tx; chemo works when nothing else did; finally ready for Provenge; test early for bone density; bone density meds; Pluvicto TENTATIVELY scheduled; GU med onc at OHSU; another happy Dr. E camper; Lupron vs Zoladex (gosrelin); success with foamy gland PCa; AnCan suports Vets
Chat Log
Pat Martin (to Everyone): 3:32 PM: Schedule for Memorial Monday?
Rick (to Everyone): 3:33 PM: It’s 5th Monday – no meetings in the 5th week but we have 2 presentations. See our Reminder.
Pat Martin (to Everyone): 3:34 PM: Thanks
Julian Morales-Houston (to Everyone): 3:37 PM: To enroll and participate: Color: To participate, please visit the website: www.progressregistry.com. Here, you can read and sign the informed consent and complete the first questionnaire. You can also scan the QR code below to enroll: If you have any questions, please contact the research coordinator, Laura Gross, at (215) 503-5285 or email laura.gross@jefferson.edu. If you leave a message, please provide the best way for the team to contact you.
Scott (to Everyone): 3:38 PM: Epstein is here https://pathology.jhu.edu/patient-care/second-opinions
Joe Gallo (to Everyone): 3:39 PM: If Tuesday (May 31), it’s an AnCan webinar …
“Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer”
Register at https://register.gotowebinar.com/register/4324977789022538512
AnCan is always considering Quality of Life and Lifestyle. If you’ve attended our live groups you’ll recognize we never get through a meeting without discussing exercise (JIMMY G!!!), diet or stress relief. Last year’s survey revealed that more than 50% of you increased exercise and decreased stress from attending our groups while 38% made changes in their diet.
The upcoming webinar will focus on these issues. It features ‘rockstar’ speaker, Dr. Stacy Loeb, Professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center; and, Dr. Justin Gregg, Assistant Professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.
Dr. Gregg will speak about his research on diet. Dr. Loeb will speak about her research on a plant-based diet, sleep, and exercise..
And if Wednesday (June1), it’s an AnCan seminar…
‘It Ain’t Your Grandpa’s BPH!’
Now we know a lot of you Gents reading this don’t have a prostate, and if you do, it’s probably radiated to a crisp! Does that excuse you from having frequency and urgency issues ….. for many of you, probably not. In our groups, we hear all too often about how many times you have to get up at night.
Well do we have the Doc for you!! ….. Steve (Dr. Prostate) Kaplan, MD is a nationally recognized urologist at Mount Sinai, NYC who specializes in benign prostate issues …. like frequency and urgency. So while we’ll be talking BPH treatments for those with prostates, we’ll also be talking frequency and urgency issues for the rest of you.
There’s NO REGISTRATION required for this seminar – just enter the AnCan Barniskis Room at 8.00 pm Eastern on Wednesday, June 1st like you would for any of our Video Chat Groups. And bring your questions …. in fact, if you already have something in mind, send it ahead of time to Joe Gallo at joeg@ancan.org.
Rick (to Everyone): 3:46 PM: Your Chat is saved on your computer IF you are joining from the desktop.
Jim Ward (to Organizer(s) Only): 3:58 PM: Gents — I need to switch to phone particiaption for the 2nd half; so if a mystery caller dials in, it’s just me.
Wang Gao Shan – PA (Private): 4:57 PM: Hi Rick, Originally I did the Color Test, yet I was offered a FREE DNA test from Myriad. Do you know this group?
Rick (to Wang Gao Shan – PA): 4:57 PM: We do and we are currently in discussion
Rick (to Wang Gao Shan – PA): 4:58 PM: How did that free offer come about
Joe Gallo (to Everyone): 5:07 PM: Embr Wave. embrlabs.com
Wang Gao Shan – PA (Private): 5:09 PM: I received an email from ZERO (I have been on their mailing list for along time). I also contacted Myriad agfter reading an article and was offered a free test… they will send me the kit to Portland, Or shortly before I arrive on June 12, 2022.
Jeff Marchi, San Francisco (to Everyone): 5:11 PM: https://www.prostatecancerpromise.org for free DNA test for these with it
Joe Gallo (to Everyone): 5:11 PM: “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer”
Register at https://register.gotowebinar.com/register/4324977789022538512
AnCan is always considering Quality of Life and Lifestyle. If you’ve attended our live groups you’ll recognize we never get through a meeting without discussing exercise (JIMMY G!!!), diet or stress relief. Last year’s survey revealed that more than 50% of you increased exercise and decreased stress from attending our groups while 38% made changes in their diet.
The upcoming webinar will focus on these issues. It features ‘rockstar’ speaker, Dr. Stacy Loeb, Professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center; and, Dr. Justin Gregg, Assistant Professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston.
Dr. Gregg will speak about his research on diet. Dr. Loeb will speak about her research on a plant-based diet, sleep, and exercise.
And if Wednesday (June1), it’s an AnCan seminar…
‘It Ain’t Your Grandpa’s BPH!’
Now we know a lot of you Gents reading this don’t have a prostate, and if you do, it’s probably radiated to a crisp! Does that excuse you from having frequency and urgency issues ….. for many of you, probably not. In our groups, we hear all too often about how many times you have to get up at night.
Well do we have the Doc for you!! ….. Steve (Dr. Prostate) Kaplan, MD is a nationally recognized urologist at Mount Sinai, NYC who specializes in benign prostate issues …. like frequency and urgency. So while we’ll be talking BPH treatments for those with prostates, we’ll also be talking frequency and urgency issues for the rest of you.
There’s NO REGISTRATION required for this seminar – just enter the AnCan Barniskis Room at 8.00 pm Eastern on Wednesday, June 1st like you would for any of our Video Chat Groups. And bring your questions …. in fact, if you already have something in mind, send it ahead of time to Joe Gallo at joeg@ancan.org.
Herb Geller (to Everyone): 5:13 PM: I gotta go. Will see you all in three weeks, as I’m off to Paris soon.
Peter Monaco (to Everyone): 5:16 PM: Have to go. Thanks for another informative meeting!
Mike Yancey (to Everyone): 5:17 PM: Gotta drop off. Thanks Len for hosting. Look forward to next time.
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 16, 2022
Two upcoming events to mention first ….. Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer with Drs. Stacy Loeb (NYU) and Justin Gregg, Tue, May 31 @ 8.00 pm Eastern. Register at https://register.gotowebinar.com/register/4324977789022538512
It Ain’t Your Grandpa’s BPH with Dr. Steve Kaplan (Mt. Sinai, NYC) Wed, June 1 at 8.00 pm No registration required – just join live https://www.gotomeet.me/AnswerCancer We’ll be talking all issues around frequency, urgency, nocturia and more. Send your questions to joeg@ancan.org
AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@ancan.org.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly 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: Lotsa folks and topics – but save the best til last when a Care Partner gives her perspective(rd)
Topics Discussed
Denovo Mx G5+5 calls for triple line attack; handling a recent hi-risk Dx; PSA rise leads to consult with Dr. E; blood clots in bladder down to RT cystitis?; Mod’s lung nodules need Bx; starting IHT after 4 yrs; abi should not prevent Provenge; letting PSA rise for PSMA scan; do low dose steroids impact muscle strength?; darolutamide approved by Bayer; Ac225+Lu177 started; PSA eventually turns down post spot RT; post Brachy +IMRT maybe a PSMA?; enlarged gland post SBRT??; Care partner offers her perspective
Chat Log
Peter Kafka – Maui (to Organizer(s) Only): 5:23 PM: I spoke to Blue Earth a month ago or so and they did not offer Axumin on the Islands at that time. The Ga68 “kit” just came to Honolulu but it is not yet up to speed in terms of reading results according to my oncologist.
AnCan – rick (to Organizer(s) Only): 5:27 PM: Peter – that can’t be correct. There is software immediately available to read the Pylarify scan now.
Peter Kafka – Maui (to Organizer(s) Only): 5:29 PM: That is what my local oncologist told me last week when I met with him. Also my local Rad onc said it is only the Ga68 scan and that is very recent.
Ravi (to Everyone): 5:33 PM: how come no one is talking of radiation
Stephen Saft (to Everyone): 5:34 PM: Isn’t the most urgent thing for Bruce to do is to see a GU oncologist
Jeff Marchi, San Francisco (to Everyone): 5:35 PM: PROMISE is Open to All Prostate Cancer Patients Patients in any stage of treatment or survivorship are invited to join PROMISE.
AnCan – rick (to Everyone): 5:35 PM: Ravi – He’s denovo metastatic …… and he is being seen by a urologist. Radiation should follow ….
eric (to Everyone): 5:35 PM: It was alot of info for bruce make sure he can review this call
Jeff Marchi, San Francisco (to Everyone): 5:36 PM: that quote is from the promise site https://prostatecancerpromise.org for free dna test for prostate cancer to find dna problems
Henry (to Everyone): 5:43 PM: have to run; thanks everyone
AnCan – rick (to Herb Geller): 5:43 PM: mostly BRCA 2 actually Herb
Ori (Private): 6:03 PM: What is the name of the drug that you mentioned which is used to treat people with the BRCA gene
AnCan – rick (to Ori): 6:06 PM: the drug class is PARP-I; there are several drugs – olaparib, rucaparib, niraparib,talozaparib and more.
Stephen Saft (to Everyone): 6:08 PM: I have a friend who has several had UTI as well as 2 clots. I think he was diagnosed in 2018.
John Ivory (to Everyone): 6:12 PM: I had blood in my urine 1.5 – 2 years after 40 rounds of radiation, but it only lasted for a day or two. Cystoscopy showed nothing. Haven’t had it again. No pain in urination for me.
AnCan – rick (to Everyone): 6:14 PM: Must have happened to me at lest 5 or 6 times post RT – some at least 5 + yrs out. No pain
AnCan – rick (to Everyone): 6:17 PM: Wed June 1, 8.00 pm Eastern Dr. Steve Kaplan, AnCan Barniskis Room. We’ll be talking BPH, urgency, frequency. Bring your questions.
Joe Gallo (to Organizer(s) Only): 6:18 PM: It’s a drop-in First Wednesday meeting at 8 p.m. EST on Wednesday, June 1. Go here for directions to the Barniskis Room to attend the free program, featuring BPH guru, Dr. Steven Kaplan: https://ancan.org/groups/joining-instructions/ Mark it on your calendar.
John Antonucci – CT (to Everyone): 6:25 PM: 3 cm is correct
Peter Kafka – Maui (to Organizer(s) Only): 6:27 PM: My buddy Mark who was on our call 3 weeks ago or so had a lung mass show up on his CT scan. Biopsy showed “lung” cancer on top of his recently diagnosed GL-9 PCa. So he is riding the rails right now. Trying to push him off the Islands but he may stay here. Low spirits!
Ben Nathanson (to Everyone): 6:31 PM: Thanks, Frank and Alan — and Rick
Alan Moskowitz (to Everyone): 6:32 PM: Rick and others, did any of you have clots that caused a total urinary blockage, or was it just “minor’ bleeding?
AnCan – rick (to Everyone): 6:34 PM: Minor bleeeding for me
John Antonucci – CT (to Everyone): 6:35 PM: Alan, my brother had the same painful bloody blockage and clots. This was before his prostate CA diagnosis. Had 2 awful ER visits. No final explanatiion! No recurrence since–4 years. No history of radiation, though that might be the most likely for you.
Alan Moskowitz (to Everyone): 6:35 PM: Thanks John and Rick.
John Antonucci – CT (to Everyone): 6:39 PM: From my interaction checker—-prednisone decreases the effect of Provenge. not an absolute contraindication.
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 April 27th, we had the pleasure of hosting Solo Arts Heal with special guest, Elizabeth Jameson!
Elizabeth Jameson is an artist, writer, and health advocate. Since her diagnosis of multiple sclerosis, she has used medical technology to create art as a way of taking ownership of her disease. She transformed her unsettling, clinical black-and-white brain scans into work that invites others to be curious and contemplate
the beauty of the brain, and encourages conversations about what it means to live in an imperfect body. Her use of strong, vibrant colors is a way to celebrate and honor the journey of what she has had to confront—the disease of her brain—and to challenge others to question what it means to be imperfect, which is part of the universal human experience.
As her disease has progressed, her practice has evolved. She now concentrates on writing and publishing essays about illness and disability. In 2021, she created MS Confidential, a monthly web series that provides a safe space for raw and informal discussions about the chaos of daily life for people living with multiple sclerosis.
Watch the performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
AnCan’s Art Director and MS Moderator, Hannah Garrison, Honored!
The Multiple Sclerosis Association of America has recently recognized one of AnCan’s favorite moderators, Hannah Garrison as their Annual 2022 Benefit Honoree!
AnCan LOVES Hannah ….. she is a longtime moderator of our MS Groups AND leads the AnCan Art Program that teaches everyone that no matter your abilities, art is not out of reach. Check our AnCan Art Gallery to see the work Hannah has helped our participants create. Btw, that program will be back in 2022 with 4 sessions before year end – and we’ll be providing FREE art supplies!
Every year, MSAA names one corporate honoree, and one from the MS community. This year
Hannah was recognized as the MS Community Member of the Year,. She has been working with the
MSAA to lead and develop their “Improving Lives Through Art” Paint-Along series throughout 2021 – a program that we beta-tested here at AnCan.
This is amongst MSAA’s newest set of virtual fundraising events in which participants paint a predetermined subject together in a virtual “classroom”, instructed by Hannah. Hannah sets the subject, MSAA sends the supplies off to participants’ homes, and everyone who joins in has a chance to create a special piece of artwork with family or friends together with everyone in the virtual room. The program is a huge success, and continues to support the MSAA’s mission to fund programs specifically for the MS community.
Hannah is adamant that the visual arts were a stepping stone in her recovery from the grueling effects of multiple sclerosis. One day she decided she’d had enough, and began working through her mental struggles, cognitive struggles, and physical struggles via the process of making art. Now Hannah Garrison uses art as a safe space to explore her struggles and to sit with them – never to judge or belittle any result that takes place … or for that matter anything that arises along the way!
Hannah has AMAZED some of our AnCan particpants who have told us they never thought they had this creative talent within them.
You can read about Hannah here, and learn more about the MSAA Benefit which took place on May 5 th in-person and May 12th virtually, here.
Watch out for our four (4) 2022 Art with Hannah sessions, coming soon. You can reach Hannah Garrison at hannah@ancan.org if you want to be sure to receive an invite to AnCan’s classes – they are open to all.
Live performances: Many of us have missed them for two long COVID years. New Orleans has especially missed them. And while AnCan may have never missed them, given our virtual model, Herb Geller still rocked a standing-room-only, live crowd at the American Urological Association (AUA) Annual Conference last Friday the 13th (a good omen, in this case).
A number of you with prostate cancer will remember helping us by taking one or two online surveys last year, which made this research possible. Parts of this research had already been accepted at two other conferences, the European Society for Medical Oncology (ESMO) and American Society of Clinical Oncology (ASCO). While we were pleased to be recognized by those forums, COVID turned those conferences virtual, and there’s nothing like a live performance. Herb presented our greatest hits combining both the overall survey and our Active Surveilance specific questionnaire.
Survey participants said this about AnCan groups:
83% agreed the information is useful
67% discussed the information with their care teams
61% changed or informed their treatment path or strategy
71% found help navigating treatment path or strategy
80% became better advocates for themselves
Strikingly, AnCan participants have improved their lifestyle habits:
58% improved exercise habits
38% improved diets
50% reported reduced stress
AnCan helped participants make connections with each other:
85% found the groups to be welcoming
43% connected with others
30% developed friendships with other participants
Among those who attend early diagnosis, low-risk Active Surveillance meetings:
68% said that attendance helped them be their own best advocate
23% said that attendance informed them of new insights and treatments
AnCan concluded that:
The AnCan Support Group model increases patient knowledge, positively impacts treatment planning, and promotes lifestyle improvements while providing support to reduce stress, boosts confidence in navigating the disease, and improves quality of life.
AnCan empowers patients to self-advocate and improve their disease experience. This is integral to optimize physician/patient interactions and improve outcomes.
We advocate that virtual peer group attendance, based on our model, be included in (National Comprehensive Cancer Network) NCCN treatment recommendations for prostate cancer patients, especially with advanced disease.
If you took part in one of the two surveys, thanks again. And thanks especially to Rick Davis, Herbert M. Geller, James Schraidt, Howard Wolinsky, (and yours truly) for designing the surveys, crunching the data, and developing and presenting the insights from the data.
AnCan LOVES Hannah ….. she is a longtime moderator of our MS Groups AND leads the AnCan Art Program that teaches everyone that no matter your abilities, art is not out of reach. Check our
