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: If you’re on long term ADT, that cardio system takes a lickin’ but (hopefully) keeps on tickin’! Two Gents get scares this week (rd)
Topics Discussed
Graduate from Low/Intermediate Group gets educated on recurrence; Newbie w. Care Partner learns more about Pluvicto; another new man needs a GU med onc; same again for Gent in Fort Meyers; take care of your heart – check in with cardio onc; does ADT cause rheumatoid arthritis … and leg pains?; snake oil in Pheonix?; aiming for monotherapy darolutamide; give abi time to work; lay-up exacerbates muscle wating with joint replacements in sight.
Chat Log
AnCan – rick (to Everyone): 3:13 PM: We wil be spending time talking about Cardio-Oncology issues tonight.
AnCan – rick (to Everyone): 4:02 PM: Antonarakis, Stuart Bloom
ALFRED LATIMER (Private): 4:42 PM: Rick: Found that cleveland clinic has cardio-oncology here in Weston FL (near FLL). My current cardiologist is at CC. Will discuss this issue with him nextweek. Thx for the tip.
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 14, 2022
Register for our upcoming webinar on June 29 on Genetics & Genomics at https://bit.ly/3QiNvxS
If you’re a Vet, AnCan will be launching a new Vets Group to help navigate medical care. First meeting Thu, June 23, at 8.00 pm Eastern in https://www.gotomeet.me/AnswerCancer. Free and drop-in as always!
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: Long term survival with metastatic PCa is this week’s recurring theme (rd)
Topics Discussed
Newbie joins us with Lynch Syndrome; anti-PD1 immuno side effects, MSI – and the swab test for sensitivity; darolutamide monotherapy; brain fog from HT; lung nodules ID’d as PCa; stable, long-trm survivor; supporting non-particpants; care partners extend survival; when’s the right time for Pluvicto?; BIG Pluvicto success
Chat Log
AnCan – rick (to Everyone): 3:09 PM: Peter – I spoke with Alexa today about saving the chat. Evidently it depends on how you join. She will provide an explanation and directions in all our future emails.
George Rovder Arlington VA (to Everyone): 3:41 PM: Thank you Jeff Marchi. I appreciate it and will check it out. George
Len Sierra (to Everyone): 3:49 PM: https://miradx.com/imudx-testing/ The Keytruda test: IMUDX swab test ImuDx Testing Populations Patients with any type of cancer who are being considered for anti-PD1 or anti-PDL1 therapy are eligible for testing. This test predicts the risk of developing immune related adverse events in response to anti-PD1 or anti-PDL1 treatment.
Herb Geller (to Everyone): 3:50 PM: Cardiac toxicity from checkpoing therapy can range from asymptomatic troponin-I elevations to conduction abnormalities of the heart and even fulminant myocarditis. Although rare, myocarditis is a potentially fatal adverse effect of ICI therapy.
George Rovder Arlington VA (to Everyone): 3:54 PM: Thank you all, friends, for the wisdom and kindness. I have to leave early this evening. I will watch the video to see and hear the rest of the discussion. George
Julian Morales – Houston (to Everyone): 3:58 PM: Have to leave, have a conflicting meeting at 6pm.
Ben Nathanson (to Everyone): 4:00 PM: @Richard – ODENZA: A French prospective, randomized, open-label, multicenter, cross-over phase II trial of preference between darolutamide and enzalutamide in men with asymptomatic or mildly symptomatic metastatic castrate-resistant prostate cancer (CRPC) https://meetings.asco.org/abstracts-presentations/201628
Pat Martin (to Everyone): 4:00 PM: Thanks for the info and the links
George A Southiere Jr (to Everyone): 4:04 PM: very correct that most of us have been on multiple treatments that cause”brain fog”would be very difficult to discern. Be very skeptical of Pharmaceutical studies
John Antonucci (to Everyone): 4:08 PM: I just tried to find any paper on monotherapy androgen blockers and came up with zilch
Thomas Jacobsen – CO (to Everyone): 4:43 PM: Have to leave. Thank you everyone.
Russ Strehlow (to Everyone): 4:46 PM: I have to leave also. Thank you
George A Southiere Jr (to Everyone): 4:50 PM: Great meeting everyone, gotta go. Be well all
Richard Wassersug (to Everyone): 5:00 PM: Thank you all. Have to go.
Herb Geller (to Everyone): 5:00 PM: I gotta go as well. See you all next week.
David Muslin (to Everyone): 5:01 PM: Great meeting as always. See you men next Monday night.
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: Prostate Cancer can occur in the testes!! And plenty of Provenge(rd)
Topics Discussed– long session this week with 2 newbies and 12 folks needing time!
Recurrent PCa does not respond to intermittent cycles; confined recurrence of focally treated high risk PCa; keeping the cancer offguard; Provenge – 2nd time today and not the last; IHT starting; Dr. E prescribes Pluvicto; Trimix experience; darolutamide beter than enz; remembering Hawaian Bob Smith; peritoneal implants (lesions) return; testicualr PCa lesion; UCLA refunds PSMA cost; lo-dose abi with food; pros & cons of self-cathetering; when to move on from chemo; morning fatigue and adjusting darolutamide dose; Provenge tips – again/finally!
Stephen Saft (to Everyone): 6:34 PM: I am going to say goodnight. Thanks
Joe Gallo (to Everyone): 6:43 PM: Vets interested can send me an email or drop in. Joeg@ancan.org
John Birch (to Everyone): 6:58 PM: Need to sign off, appreciate the discusssions tonight.
Frank Fabish – Ohio (to Everyone): 7:04 PM: thanks guys allowing me to give an update. Can’t make it next Tuesday.
Pat Martin (to Everyone): 7:07 PM: I’ll catch you next Tuesday. Good meeting
Mike Yancey (to Everyone): 7:15 PM: Got an early morning, so need to drop before we complete tonite. Lots of good discussion.
Julian Morales – Houston (to Everyone): 7:26 PM: need to drop off – another great meeting, Glad to be able to relate my experience to this community. All the best to everyone!
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.
