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.
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.
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 10, 2022
If you’re a Vet and want to be notified when our new Vets Group starts, please let Joe Gallo know at joeg@ancan.org. Right now we plan to go ‘public’ on June 23 and each 4th Thursday thereafter. May will be a practice session.
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: It ain’t easy to find ‘good help’ in Canada – especially with a rare type of prostate cancer (rd)
Topics Discussed
rare sarcomatoid PCa tumor; finding a GU med onc in Canada; mCRPC trial participation; Mx disease stabilizes; longer term Tx risk from same protocol; HCP collaboration; PSA drop 12 weeks after 1st Pluvicto; supplementing testosterone for bone strength; newbie to trimix; Peter Kafka nails it AGAIN with his words of wisdom
Chat Log
Peter Kafka – Maui (to Organizer(s) Only): 6:24 PM: PSA at DX around 4.XX
Herb Geller (to Everyone): 6:25 PM: https://www.foundationmedicine.ca/
Julian Morales-Houston (to Everyone): 6:50 PM: need to leave – will try to come back later.
John Antonucci – CT (to Everyone): 6:52 PM: Like Herb, I’m looking at the llit. on sarcomatoid. I’m hoping to find an author fom Canada; if I do I’ll write in. It also seems to me so far the treatment is the same for both variants.
Jeff (to Everyone): 7:03 PM: ENTRUMADENANT,ZIMBERELIMAB,DOCETAXEL EVERY 21DAY FOR A TOTAL OF TEN TREATMENTS i ALSO OPTED FOR AN ORCHECTOMY ………….,I WAS TIRED OF THE FEMALE MENOPAUSE FROM ADT THERAPY
Herb Geller (to Everyone): 7:08 PM: https://clinicaltrials.gov/ct2/show/NCT04381832 Adenosine Receptor Antagonist Combination Therapy for Metastatic Castrate Resistant Prostate Cancer (ARC-6)
Jeff (Private): 7:10 PM: You found it Herb the study
Herb Geller (to Jeff): 7:11 PM: Yes, that’s the study.
C Huerta (to Everyone): 7:22 PM: What doctors do we know in Australia?
Ancan – rick (to Everyone): 7:24 PM: Michael Hoffman
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 2, 2022
Apologies for the bad link to our Elizabeth Jameson Solo Arts Heal interview. The Marsh pulled the recording to edit it – find it now at https://www.youtube.com/watch?v=D4n2a… Don’t tell Jimmy G or Elliott, but this could be the best yet! She’s an inspiration …
If you’re a Vet and want to be notified when our new Vets Group starts, please let Joe Gallo know at joeg@ancan.org. Right now we are probably going out to the public on June 23; May will be a practice session.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about this and our other 11 monthly prostate cancer groups 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: How do we relate to our prostate cancer? And we back-end a VERY young denovo Mx newbie (rd)
Topics Discussed
Denovo oligoMx gent; group’s take on Covid immunizations; darolutamide fatigue … maybe?; exercise fights HT side effects; PSA creeping on IHT; how do you relate to your PCa??; AnCan’s Speaking Freely; brief snippets – true or false?; chemo plateaus PSA around 17; for Locometz seek Lutathera sites; are v. small changes in insignificant PSA a concern; Pluvicto shortages; 43 yrs old w. denovo Mx.
Jeff Marchi, San Francisco (to Everyone): 3:39 PM: when you sign up with Promise your sample is processed by Color and their genetic counselors talk with you about results. if you have future issues they will work with you.
Thomas Jacobsen (to Everyone): 3:42 PM: Dropping off now. Thanks everyone for your comments. – Tom
MIke Yancey (to Everyone): 3:59 PM: Gotta drop early. Be on next weeks meeting.
