Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 11, 2022
In 2021, almost 15,000 visitors watched 258,000 viewing minutes on AnCan’s YouTube Channel – THANK YOU! Learn more about AnCan in 2021at https://mailchi.mp/ancan/ancans-year
Savvy Co.op , a patient led research company, are seeking a very few men with metastatic, castrate resistant PCa who failed a 2nd line anti-androgen. It pays $110 for 60 min from home. For more details and to apply check https://gigs.savvy.coop/scpct/?r=ancan
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about our 11 monthly prostate cancer groups at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter at https://ancan.org/contact-us/
Editor’s Pick: We learn about a new insurance approved cancer rehab program; and we talk about how to prepare for IMRT and for Provenge. (rd)
Topics Discussed
GU med onc needed in WI area; getting germline (inherited) genetic testing; where’s Jake?; Valentine’s Intimacy Sexual Dysfunction Webinar on Jan 31; Savvy Coop needs a few good men; ReVital – a new PT rehab program; how to prepare for successful IMRT; … and to prepare for Provenge; PSMA scans; Lu177 combo treatments; HOXB13 mutation; 18 vs 24 mo. ADT; a strange abi history; ‘partial’ drug holidays and monotherapy HT
Chat Log
AnCan – rick (to Everyone): 4:21 PM: Emanuel Antonarakis, Masonic Cancer Center, U. of MN
Daniel Ford (to Everyone): 4:22 PM: Has anyone seen an instance where genetic profiling led to actionable (ideally successful) therapy?
Herb Geller (to Everyone): 4:23 PM: Abolutely. BRCA mutations can lead to treatment with PARP inhibitors.
Peter Kafka (to Everyone): 4:24 PM: I have tagged mutations and was treated with targeted therapies so far successfully. Several others on the call as well
Daniel Ford (to Everyone): 4:25 PM: So if no BRCA mutations then nothing useful? What are examples of targeted therapies?
Carl Forman (to Everyone): 4:26 PM: Genetic testing resulted in my being treated with a PARP inhibitor, Olaparib, due to my BRCA2 mutation. It kept my PSA undetectable for almost 2 years before it ran its course.
Len Sierra (to Organizer(s) Only): 4:28 PM: Dan, there are several mutations that suggest patients with PCa may respond well to immunotherapy.
Carl Forman (to Everyone): 4:30 PM: Also, genetic testing can identify whether you are MSS or MSH and have either a high or low tumor burden. If MSH and high tumor burden, use of Keytruda can be a viable option.
Cal Van Zee (to Everyone): 4:30 PM: the risk to your children is significant if you have BRCA mutations. If you have chldren you definitely want to know.
John Vandenberg (to Everyone): 4:31 PM: What is MSS and MSH?
Bill Franklin (to Everyone): 4:32 PM: Dan, Len Sierra has noted that there are several mutations that suggest patients with PCa may respond well to immunotherapy.
Carl Forman (to Everyone): 4:32 PM: microsatellite stable (MSS) or high (MSH)
George Rovder, Arlington VA (to Everyone): 4:44 PM: Genito Urinary (GU) Medical Oncologist
Alexa Jett (to Everyone): 4:56 PM: https://bit.ly/3qWKSWK Dr. Rachel Rubin Webinar – January 31st at 8 pm ET
Carl Forman (to Everyone): 5:04 PM: www.revitalcancerrehab.com
Len Sierra (to Everyone): 5:07 PM: Rehab Cancer only available in these states: Services are currently available in AZ, CA, GA, KY, MD, VA, DC, IL, ME, MN, MO, NJ, PA, TN, TX, WA, OH. Insurance coverage may vary based on provider.
Chick Lindsay (to Everyone): 5:10 PM: Thanks for this info. my brother can use this.
eric (to Everyone): 5:44 PM: Good night guy. Have to go but thanks for the knowledge, stay positive, and stay blessed. Talk to you guys next week!! We live to fight another day!!
AnCan – rick (to Everyone): 5:45 PM: right back at ya, Eric
Ben Nathanson (to Everyone): 5:45 PM: Thanks, Eric!
Chick Lindsay (to Everyone): 5:53 PM: Is Luteshim a chemotherapy?
Len Sierra (to Everyone): 5:53 PM: It’s a targeted radiotherapy. Radioligand therapy, more accurately.
Chick Lindsay (to Everyone): 5:54 PM: Thanks.
John Birch (to Everyone): 6:03 PM: Have to run. Appreciate the dialogues and info sharing tonight.
Jeff Wood (to Everyone): 6:05 PM: Good night to all.
Ken (to Everyone): 6:11 PM: Great
Chick Lindsay (to Everyone): 6:17 PM: Who is John’s Vandenberg’s doc?
AnCan – rick (to Everyone): 6:18 PM: Andrew Armstrong at Duke
Daniel Ford (to Everyone): 6:18 PM: Gotta run guys – thanks.
Cal Van Zee (to Everyone): 6:20 PM: First round chemo for me tomorrow. Trying mightily to not be afraid as I know many of you have already had the six rounds.
Len Sierra (to Organizer(s) Only): 6:23 PM: Good night, gents. Good job, Peter K!
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 December 22nd, we closed out our 2021 season of Solo Arts Heal with Alex Kaplan! (and on that note, we have even more fun to come in 2022!)
Alex, a Philadelphia native and LA transplant, was trained as an actor in the University of Miami’s conservatory and transitioned to a career behind the camera as a producer and director for the past decade.
Today, Alex is the Co-founding Executive Director & Chief Vision Officer at Of Substance (OfSubstance.org), an innovative non-profit revolutionizing addiction and mental health treatment, education, and support, using premium entertaining short films as a tool for deeper healing, growth, and transformation.
After surviving his own battles with addiction, Alex recognized the power of story as a tool in his recovery and found an exciting way to use his filmmaking experience to help others on their paths of overcoming struggles of shame & isolation. The biggest thing he learned on his journey is that his issue was far less about using substances than it was about WHY he used substances; It was about shame, isolation, a fear of not belonging, and a fear of not being good enough.
Alex and his co-founder Brian Gallagher built Of Substance to help us all recognize that we’re not alone in these feelings and to positively transform people’s relationships with themselves, others, and their beliefs in what’s possible.
“Our film “Trapped” is not simply for those of us who struggle with substance use, it’s for all of us who feel trapped sometimes. Hopefully Trapped will help us all better empathize with one another, recognizing and relating to the feeling and experience. This film helped my mother stop asking me “Why can’t you stop drinking?” and finally move our conversation forward to “I see you, I love you, I’m with you.” Our hopes are that this film can do that for you and your loved ones as well.” – Alex
Watch the performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, 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 November 24th, we were so thrilled to host Nire Nah!
Nire is a singer-songwriter, visual artist, mental health advocate, and human of substance (who happens to also be substance-free). Since 2014, she has been living, learning, creating, and performing in Chicago, Illinois. Her work spans multiple disciplines and mediums, from painting to performance to psychological upkeep. Guided by the principles of rigorous honesty and kind curiosity, Nire aims to invite audiences into a space where they are safe to feel their feelings without restraint. She strives to make people laugh, cry, and think – preferably at the same time.
As a creator in recovery, Nire’s work is tightly intertwined with her own healing and personal growth. Her debut album Coeur Age (2018) is a rollercoaster of story-songs, anthems, tantrums, lullabies, and laments, mapping the wilderness of active addiction and mental illness from the inside out. Her latest release Everything Stands Back Up (2020) balances the scales with a series of earnest reflections on the grueling but grounding work of long-term emotion regulation and mental maintenance. In these songs, Nire explores the nonlinearity of recovery and emphasizes the important connections between individual and communal healing.
Nire shared songs and an animated video from her latest album, Everything Stands Back Up.
Watch the show here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 3, 2022
Here’s to a healthy 2022 for all – to learn more about what AnCan has achieved in the past 12 months, please visit https://mailchi.mp/ancan/ancans-year-… We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU! All
AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/ To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
This meeting was a little different to normal with more than 50 participants carried over from the PCF Retreat session https://www.youtube.com/watch?v=eoFWeGbeGUA We gave time to new participants, then opened the floor.
Editor’s Pick: It can be really tough getting good care in Canada. We also examine intraductal issues.(rd)
Topics Discussed
‘Young’ man with low level recurrence 4 years after RP; NJ gent needs to find a GU med onc; getting treated for progressive PCa in Canada is much tougher; younger man with intraductal Dx needs better guidance; intraductal conversation gets expanded; long-term chemo continues to hold the beast at bay!; reading PSMA scans can be challenging – but leads to a result.
Chat Log
Michael Chandler (to Everyone): 6:21 PM: what does chemical recurrence mean?
Pat Martin (to Everyone): 6:21 PM: how often is he getting his PSA checked? t
John Antonucci (to Everyone): 6:22 PM: it means your PSA comes back up Michael
Pat Martin (to Everyone): 6:22 PM: That would help you determine PSADT
Ben Nathanson (to Everyone): 6:23 PM: @Michael Chandler –‘chemical recurrence’ or ‘biochemical recurrence’ just means that your PSA, after having gone low, has risen again past a specified level
Len Sierra (to Everyone): 6:26 PM: Biochemical recurrence is defined as a rise in PSA to 0.2 ng/mL and a confirmatory value of 0.2 ng/mL or greater following radical prostatectomy
Stephen Saft (to Everyone): 6:36 PM: I am going to say good night. My son is staying at my house tonight and I am going to hang out with him for a bit. Thanks
Jake Hannam (to Organizer(s) Only): 6:37 PM: anomaly? get rechecked
Peter Kafka (to Everyone): 6:38 PM: He should see a Med Onc right away, perhaps at MSKCC. My 2 cents.
Bill Franklin (to Organizer(s) Only): 6:39 PM: I agree, in my opinion his doctor should order a recheck anyway. I know I would ask for one.
Joe Gallo (to Organizer(s) Only): 6:39 PM: NJU is primarily a radiation facility
Bill Franklin (to Everyone): 6:41 PM: If he got rechecked and the PSA went down again on treatment then maybe a scan is in order.
Stan Friedman (to Everyone): 6:42 PM: where in New Jersey does he live?
Rick Davis (to Everyone): 6:46 PM: joeg@ancan.org
Peter Kafka (to Everyone): 6:50 PM: If he complains of arthritis and back pain, all the more important to get a psma scan. Just in case….
John Antonucci (to Everyone): 6:51 PM: good point Peter
Peter Kafka (to Everyone): 6:58 PM: Is HIFU covered by Canadian Medicine? Is it considered Standard of care in Canada? I have been anemic due to ADT for 8 years. My Hemoglobin is in the low 9’s. Eleven is pretty good . I have not been on Lupron for 5 months now. So I think Nubeqa causes it.
Stan Friedman (to Everyone): 7:29 PM: can’t he do a televisit?
Julian Morales-Houston (to Everyone): 7:29 PM: Dr E is a fantastic Medical Oncologist and works with me to guide me thru this PCa.
John Ivory (to Everyone): 7:30 PM: I agree–try to meet Dr. E by Zoom first if you can’t afford to travel
Julian Morales-Houston (to Everyone): 7:31 PM: Dr E does televisit and in this current pandemic increase – It is preferred!
Jerry Pelfrey – Mexico (to Everyone): 7:33 PM: Gentlemen, unfortunately I must leave now.
Julian Morales-Houston (to Everyone): 7:37 PM: Eleni Efstathiou, MD is at Houston Methodist Oncology Partners 713-441-9948. You can mention my name!
Bill Franklin (to Everyone): 7:38 PM:. Good night and Happy New Year to all!
Fred Stires (to Everyone): 7:39 PM: Any recommendations for a good medical oncologist in North New Jersey
Ken (to Everyone): 7:40 PM: Signed up for 12 more chemo cycles so it would take me to 43…. its possible!
John Ivory (to Everyone): 7:41 PM: Ken–you’re like the Superman of chemo–Chemoman!
Jake Hannam (to Everyone): 7:41 PM: You are my hero, Ken. Keep it up!
Len Sierra (to Everyone): 7:44 PM: Ken, time to apply to the Guinness Book of World Records — freakin’ amazing!
Jake Hannam (to Everyone): 7:47 PM: yes, great job Herb!
Len Sierra (to Everyone): 7:50 PM: Alk Phos reference range: The normal range is 44 to 147 international units per liter (IU/L) or 0.73 to 2.45 microkatal per liter (µkat/L). Normal values may vary slightly from laboratory to laboratory.
Jake Hannam (to Everyone): 7:50 PM: ALP results are reported in units per liter (U/L). For men and women older than age 18, an ALP level between 44 and 147 U/L is considered normal. The normal range for children is higher than that for adults, especially for infants and teens because their bones are growing rapidly.
Frank Fabish (to Everyone): 7:53 PM: got to go guys
Peter Monaco (Private): 7:54 PM: 5 weeks since my hip replacement surgery. Anterior method is awesome. Recovery has been a breeze!
Rick Davis (to Peter Monaco): 7:54 PM: Told ya …. ;<)))))
George Rovder, Arlington VA (to Everyone): 7:55 PM: Thank you all. George
Peter Monaco (Private): 7:55 PM: Indeed you did! Glad you were right!
don kramer (to Everyone): 7:56 PM: Thank you, Rick and Joe and all. always beneficial to get the help along this path of barbed wire and broken glass
don kramer (to Everyone): 7:56 PM: Be Well , ALL.
Pat Martin (to Everyone): 7:57 PM: See ya all next Tuesday.
Julian Morales-Houston (to Everyone): 7:59 PM: Happy New Year to all!!
Michael Chandler (to Everyone): 8:00 PM: Thank you Rick and all. Happy New Year and see you next week
Martin Wice (to Everyone): 8:01 PM: Thank you. Happy new year.
For the final webinar of 2021, we went out with a bang with “How Do You Know When to Enter Active Surveillance and When to Leave?”
Featuring Kirsten Greene, MD (Paul Mellon Professor andchair of the University of Virginia’s Department of Urology), Dr. Greene stated that the goal for most men on AS is delaying active treatment.
“Both you and your physician should know if you are on watchful waiting or active surveillance and it should be the one YOU WANT. Know your destination!”, she said. Patients and doctors should recognize that AS involves close monitoring and is different from the hand’s off approach of watchful waiting.
She shared:
• Active surveillance involves close PSA follow-up, serial biopsies, MRI, and maybe genomic testing.
• The goal of active surveillance is to safely delay treatment but preserve your option to treat for cure.
• Watchful waiting is a hands-off, approach. PSA periodically with no biopsies, no imaging.
• The goal of watchful waiting is to allow the prostate cancer to take its natural course (which means maybe spread) and to treat symptoms when they arise. No plan for curative treatment ever.
Some men with very low-risk prostate cancer may never be treated.
Dr. Greene stated that the triggers for intervention are:
• Consistent change in PSA
• Progression found on follow-up biopsy
• Patient anxiety
• Clinical or radiographic evidence of local/distant progression
• Identification of more concerning pathologic variants of prostate cancer (cribriform or intraductal patterns)
Hear all about this, and more by watching the recording:
Dr.K very generously agreed to answer addtional Q&A after the session ….. you’ll find a whole bunch more great information here – and thanks to Howard W for writing them up. Click AnCan After Hours Greene Q&A
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick: We all know this group is for men living with advanced prostate cancer. It’s also for men lviing with advanced bladder cancer …. listen in to find out why! (rd)
Topics Discussed
PROMISE may be the ticket; advanced bladder cancer may not be so different from PCa; disease recurs after 20 years; Provenge on the Islands; dexamethasone vs prednisone with abi; dex and heart rate; nocturia and how to deal with it; Agent Orange and otehr VA issues; BAT experience; entering hospice; GU Med Onc recommends RT
Chat Log
Herb Geller (to Everyone): 4:10 PM: On a Mac, the chats are in Documents>GoToMeeting Chats
Peter Kafka (to Everyone): 4:13 PM: psma scan time
Peter Kafka (to Everyone): 4:15 PM: Oliver Sator at Tulane would be a good option.
Carl Forman (to Everyone): 4:18 PM: I had tried to get a telemed appt with Sator for a second opinion, but was told he only sees new patients in person. Didn’t want to get on a plane to see him.
John Antonucci (to Everyone): 4:20 PM: HIya Jake
Jake Hannam (to Everyone): 4:20 PM: pylarify
Alan Moskowitz (to Everyone): 4:22 PM: Could he have had C 11 Choline scan?
Joe Gallo (to Everyone): 4:27 PM: Invitae
Jake Hannam (to Everyone): 4:28 PM: I might have some input on oxycodone. I’m an old pro.
Julian Morales-Houston (to Everyone): 4:30 PM: I got the Color this week?
Bill Lewis (to Everyone): 4:34 PM: I’ve done more than 8000 self catheterizations. lewis.bill@gmail.com
AnCan – rick (to Everyone): 4:45 PM: You ain’t going to hear this type of stuff anywhere else, Gents!!!
Alan Moskowitz (to Everyone): 4:48 PM: Avoid any gas causing foods –
Mark Horn (to Everyone): 4:53 PM: Many thanks everyone
Bill Lewis (to Everyone): 5:02 PM: To Steve: my oncologist would give you a special version of Chemo, including Taxotere and 2 other drugs right away. Love to talk.
Jake Hannam (to Everyone): 5:02 PM: axumin PSMA Pet
Vic (to Everyone): 5:05 PM: from the PEACE 1 study/trial and be sure to talk with the GU MO
Erwin Zoch (to Everyone): 5:10 PM: I suggest that unfamiliar acronyms be defined when 1st used for newcomers e.g,, SBRT is Stereotactic Body Radiation Therapy (or RadioTherapy).
Bob Smith (to Everyone): 5:12 PM: Regarding Steve’s comment on head bump, is it common for concussions to lead to PCa brain or other?
Herb Geller (to Everyone): 5:13 PM: I have not seen any suggestion that a concussion can promote a PC metastasis
Peter Kafka (to Everyone): 5:13 PM: I have never heard of incidents like this leading to cancer metastasis. But I am no expert.
AnCan – rick (to Everyone): 5:16 PM: Bob – not sure there is any correlation that I have heard of.PCa spreads without any interference from outside forces – unfortunately.
Steve Barber (to Everyone): 5:22 PM: My imaginatve, “pet” theory is that 35 years of cell phone use/radiation conpromised the integrity of bone in my skull on the right side.
Vic (to Everyone): 5:24 PM: what study supports the abi with meals?
Jake Hannam (to Organizer(s) Only): 5:30 PM: bone scans are notoriously insensitive
AnCan – rick (to Everyone): 5:31 PM: Vic – we have articles around abi with food. But only re. reducing the dose with food.
Jim Marshall, Alexandria, VA (to Everyone): 5:41 PM: Jiimmy – Count your blessings you ARE. Think of what happens if you are not. Jim Marshall
Joel Blanchette, Reston VA (to Everyone): 5:41 PM: I am on the exact schedule as Jimmy and Herb.
Julian Morales-Houston (to Everyone): 5:42 PM: This is my schedule to a T!
Stan Friedman (to Everyone): 5:43 PM: I have obstructive sleep apnea and the therapy reduces the number of times I get up to one, maybe two.
Vic (to Everyone): 5:44 PM: I’ve had some success just ignoring the urge to go an being able to fall back to sleep without leaking
AnCan – rick (to Everyone): 5:44 PM: Myrbetriq
Bill Lewis (to Everyone): 5:47 PM: Food added to full-dose Zytiga: PMID 25777155; DOI: 10.1038/pcan.2015.7 — Bill Lewis
Steve Barber (to Everyone): 5:47 PM: Thanks to all! At this time I must get off the meeting. I look forward to another visit and appreciate all the input today. Steve
AnCan – rick (to Bill Lewis): 5:49 PM: Tx Bill – we will definitely take a look at the refernce. I am sure Len and Herb are on it.
Len Sierra (to Organizer(s) Only): 5:51 PM: I just did. 2015 study with 41 patients. They claim 16% better response on food with full dose. No increase in tox. Hard to believe.
Len Sierra (to Organizer(s) Only): 5:53 PM: I’d need to read the full paper. And see if anyone was citing this study.
Herb Geller (Private): 5:53 PM: IT is a small retrospective study from 2015, They say that abi with food lowered T, so there must have been an issue with their initial therapy.
AnCan – rick (to Organizer(s) Only): 5:53 PM: Maybe you can look closer ….. But even so, changing dose like that must inc. medical advice. Did these men fail abi then up the dose.
Herb Geller (to Organizer(s) Only): 5:54 PM: T is a small retrospective study from 2015, They say that abi with food lowered T, so there must have been an issue with their initial therapy. It is totally flawed
Peter Kafka (to Everyone): 5:55 PM: Don’t forget the water quality at Fort Bragg
Jake Hannam (to Everyone): 5:57 PM: Military water quality is notoriously bad and still being EPA-remediated across the country
Herb Geller (to Everyone): 5:59 PM: I looked at the abstract of the study. Thay say that abi with food caused a decline in T levels as well as PSA in a small percent of men. The fact that T declined suggests they were undertreated before switching to food. T should be undetectable with any effective dose of abi
Joe Gallo (to Everyone): 6:01 PM: Veterans Population ~19,000,000
Veterans in VHA System ~9,000,000
Veterans in VHA with Prostate Cancer 488,984
Veterans in VHA with Metastatic Prostate Cancer 16,282
Veterans diagnosed with Prostate Cancer each year ~15,000
Cumulative (10year) Cost of High Risk PCa Patient2
~$200,000
Total Economic Burden for High-Risk Patients in VHA ~$3,256,400,000
Vic (to Everyone): 6:02 PM: Is a vet rep needed for St. Louis, MO.? If so, who should be contacted?
Joe Gallo (to Everyone): 6:03 PM: Vic and anyone interested let me know and I will forward the info. joeg@ancan.org
Vic (to Everyone): 6:04 PM: please do Joe, thanks
Vic (to Everyone): 6:14 PM: the nasa astronauts used a penis prosthesis for urinating, perhaps that would be available and helpful for you Jake
Erwin Zoch (to Everyone): 6:15 PM: Thanks to all of you for this amazing information! Thanks to Jay for encouraging me to join this group. I hope to be with you again soon.
Jay Mills (to Everyone): 6:16 PM: Best of luck tomorrow Erwin with your appointment.
Peter Monaco (to Organizer(s) Only): 6:18 PM: Need to sign off gents! I will handle all recordings this week. Best regards and Happy New Year!
Jake Hannam (to Organizer(s) Only): 6:19 PM: you too peter and thanks for your help
We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick:This week, it’s a theme – men who are clearly their own best advocate and men who just ain’t….. and don’t let a handful of difficult customers deter you (rd)
Topics Discussed
Foundation Medicine’s Next Generation Sequencing liquid biopsy ; ‘Be You Own Best Advocate; looking to bike like Dad for another 30 yrs ….at 59 ; get best information to make intial treatment decision; everone else responsible for this man’s PCa except him; when to intorduce 2nd line anti-androgen and which one; and more … abi vs enz; finishing salvage RT; let’s talk about soy; explaining RT ligands/radionuclides; yup – that pain in the neck is PCa; cabazitaxel – hopefully the plateau before the drop; holding the course with pembro despite no result; blood pressure issues; Lu177 PSMA’s a winner for this v. grateful man; palliative care, hospice or what?
Chat Log
Joe Gallo (Private): 6:08 PM: What about SelectMDx?
AnCan – rick (to Joe Gallo): 6:09 PM: ???? – explain Joe
Joe Gallo (Private): 6:11 PM: Urine based test that confirmed the probability that I had greater than Gleason 7. Proceeded to TP. A favorite of E David Crawford
ALFRED LATIMER (Private): 6:12 PM: Rick. I forget. Who does the liquid biosy?
Jake Hannam (to Everyone): 6:13 PM: ty carl – i do have a brief update but no news
Joe Gallo (Private): 6:13 PM: Measures 2 mRNA cancer related biomarkers
AnCan – rick (to ALFRED LATIMER): 6:14 PM: Foundation Medicine
AnCan – rick (to Organizer(s) Only): 6:19 PM: He is high risk with PSA 22 but borderline
Jimmy Greenfield (Private): 6:19 PM: Thirty years! I like his optimism
Len Sierra (to Everyone): 6:19 PM: Crude incidence of individual secondary cancers ranged from 0.2% to 2.3% for patients treated with external beam radiotherapy, 0.1% to 2.1% for patients treated with brachytherapy, 0.2% to 1.7% for patients treated with brachytherapy and external beam boost, and 0.3% to 2.3% for patients not exposed to radiotherapy BMJ. 2016; 352: i851. Second malignancies after radiotherapy for prostate cancer: systematic review and meta-analysis
Warren in Edmonton (to Everyone): 6:24 PM: If Len would like to chat with me after the meeting please let me know, I can offer a great deal of information on his question
Peter Kafka (to Organizer(s) Only): 6:24 PM: He should get a second opinion on his biopsy with this one
Joe Gallo (to Everyone): 6:26 PM: Epstein Consult https://hopkinsconsults.org Eric. Just ask you urologist to send. You don’t have to track down your slides
Eric Madison, WI. (to Everyone): 6:35 PM: Have a great night, guys!
Joe Gallo (to Organizer(s) Only): 6:35 PM: He will get a good discussion when he chats with Epstein
Pat Martin (to Everyone): 6:36 PM: I was dxed and had at least 6 weeks before sugery. They gave me casodex and Lupron
Warren in Edmonton (to Everyone): 7:24 PM: I have a small emergency at home and I must leave the meeting. Merry Christmas to all.
Len Sierra (to Everyone): 7:45 PM: Soy might lower the risk of other cancers
Studies among prostate cancer survivors indicate that eating soy foods may lower PSA levels. Among men in various stages of prostate cancer, those who consumed soy milk or isolated soy isoflavones saw their PSA levels rise at a slower rate. Source for my post: www.nutritionfacts.org
Alan Moskowitz (to Everyone): 7:48 PM: Regarding Enza vs Abi – my MO at MSK said “As for abi vs enzalutamide, as we discussed, never been compared head to head though my feeling is enzalutamide is a bit more active. Though they work differently, both have very high response rates up front but much lower when the other has already been used. In “switching” trials, enza has higher response rate after abi than abi after enza. To me, this doesn’t mean starting with abi is better. It’s just consistent with enza being the more active drug (easier to become abi resistant than enza resistant). But overall, it’s a tossup and I give abi to more elderly and frail and enza to younger and healthier. Essentially no difference between enzalutamide and apalutamide.”
Alan Moskowitz (to Everyone): 7:49 PM: I have to leave, thanks for the guidance.
AnCan – rick (to Everyone): 7:49 PM: Alan – this NOT about head-to-head; it’s about sequencing
John Antonucci (to Everyone): 8:02 PM: will they give a 2nd booster?
Len Sierra (to Everyone): 8:04 PM: They will give a second booster to immunocompromised folks.
Cal Van Zee (to Everyone): 8:12 PM: My blood pressure peaked at 200/100 on prednisone on 50mg Losartan w/o diruetic. After changing to dexamethasone, BP dropped to normal and I stopped Losartan.
Cal Van Zee (to Everyone): 8:17 PM: 120/80 or below: for me it was the Prednisone, not the AbiI’m still on Abi now but my PSA is rising now at 19. Most likely starting chemo first week of Jan
Jerry Pelfrey (to Everyone): 8:19 PM: Sorry I have to leave. Have a Great Christmas!
Julian Morales-Houston (to Everyone): 8:24 PM: Merry Christmas to all!
Stan Friedman (to Everyone): 8:24 PM: Merry Christmas!
We also learned this week that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer. To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: Is palliative care the right call or should it be hospice? We also pick apart the abi steroid recommendations. (rd)
Topics Discussed
Abi fails for denovo Mx Newbie; setting up a medical team away from home; best steroid protocol for abi; Pylarify is widely available – advocate for it; palliative vs hospice care and when to switch; abi fails for denovo Mx Oldie!; high risk man needs to watch the urologist pushing surgery; is a new ‘bone drug’ right for PCa?; cabzitaxel maintains stability – no significant results yet; Novartis/AAA helps our guy get into 2nd Lu177 trial; Ac225/pembro trial not producing results.
Chat Log
Mark Perloe, MD Atlanta (Private): 4:22 PM: If the tissue is negative shouldn’t germline be negative as well?
AnCan – rick (to Mark Perloe, MD Atlanta): 4:24 PM: Yup – exactly; but there may be a lot more in his somatic test
Mark Perloe, MD Atlanta (Private): 4:25 PM: too many different companies offering different tests.
Jim Marshall – Alexandria, VA (to Everyone): 4:57 PM: was just switched from 10 to 5mg per day because the current recommendaition from Janssen for CSPC is 5mg and CRPC is 10 mg
James Barnes (to Everyone): 5:01 PM: Thanks Jim. Just checked and my dosage is 5mg as well.
Herb Geller (to Organizer(s) Only): 5:04 PM: Based on Jim’s comment should I take 10 mg of prednisone
Len Sierra (to Organizer(s) Only): 5:07 PM: I would, Herb.
AnCan – rick (to Organizer(s) Only): 5:09 PM: I have never heard that difference …. 5mg vs10 mg. That said – my advice would be to discuss with your doc, Herb
Herb Geller (to Organizer(s) Only): 5:15 PM: The package insert for CRPC says 5 mg twice a day.
Len Sierra (to Organizer(s) Only): 5:17 PM: Herb, Jim said Janssen says this is the current recommendation (10mg). Why not call them?
AnCan – rick (to Organizer(s) Only): 5:17 PM: That was the original approval; since then 5 mg seems acceptable as you saw. Only one person takes 10 mg
Len Sierra (to Organizer(s) Only): 5:25 PM: Did Larry Fish say Hospice will not “allow” any care, even pain relief?? That doesn’t sound right.
Herb Geller (to Organizer(s) Only): 5:26 PM: They will do pain relief but not continue survival meds
Peter Kafka (to Everyone): 5:26 PM: All hospice care is different
Pat Martin (to Everyone): 5:28 PM: External catheter worked for me so I could get out and about. External hocked to tubes and a leg bag.
Cal Van Zee (to Everyone): 5:36 PM: Herb: My counselor taught me the future doesn’t exist, only now. FEAR stands for future events appear real. I choose every day to be grateful that I’m here today.
Stephen Saft (to Everyone): 5:39 PM: Eckhart Tolle writes on this. Book called the Power of Now is fantastic.
Len Sierra (to Everyone): 5:40 PM: Yes, I read that book and it is excellent.
Stephen Saft (to Everyone): 5:42 PM: To a man with a hammer everything looks like a nail. Urologist is not the only one to listen to in this situation.
Pat Martin (to Everyone): 5:54 PM: What I did is contact the practice I was transferring to and they contacted my local urologist. And it happened without my involvement
Julian Morales – Houston (to Everyone): 5:54 PM: Got another meeting to go to. always good meetings. thank you
Stephen Saft (to Everyone): 5:55 PM: I got in the habit of taking a disk copy with me whenever I get a scan.
Jake Hannam (to Everyone): 6:00 PM: I love all you guys. Just saying …
Jim Ward (to Everyone): 6:00 PM: Evenity (romosozumab)
Pat Martin (to Everyone): 6:02 PM: gotta run. Catch everyone next week
Peter Monaco (to Everyone): 6:02 PM: Right back at ya Jake!
Herb Geller (to Everyone): 6:05 PM: Romosozumab causes ONJ equivalent to others
Jim Ward (to Everyone): 6:07 PM: Thanks, Herb.
Paul Freda Florida (to Everyone): 6:17 PM: Have an online Calculus lesson to do. See y’all next week.
Jake Hannam (to Everyone): 6:20 PM: take care Paul!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick: Some docs are holding off starting HT – others are jumping in quickly. We hear from both sides in this session. (rd)
Topics Discussed
Responding to a high risk PCa Dx; responding to a recurrence; treating abdominal lymph mets; EMBR discussion; PSA fluctuates on abi; pushing the envelope on starting HT; scans or no scans before starting RT; Lu177 Managed Access Trial discussed; Dr. E
Chat Log
Joe Gallo (to Everyone): 6:31 PM: www.mskcc.org/nomograms
Len Sierra (to Everyone): 6:40 PM: Pylarify
George (to Everyone): 6:40 PM: pylarify psma scan
Joe Gallo (to Everyone): 6:40 PM: PSMA PET Pylarify
Joe Gallo (to Everyone): 6:44 PM: GU Medical Oncologist
Joe Gallo (to Everyone): 6:46 PM: Ask to take a Lupron holiday
George (to Everyone): 6:52 PM: Mike, My case was like yours. My urologist surgeon sent me to interview radiation oncologists. The surgeon told me he would not do surgery, because if I had a prostatectomy there would surely be positive margins.requiring salvage radiation. He also told me that after surgery there would be incontinence, which might in time resolve. However, he said, radiation will lock in the incontinence at the state it is at the start of radiation.
Paul Freda , Lake Worth FL (to Everyone): 6:57 PM: Have to give an online Physics lesson at 9pm. See you all next week. 🙂
Peter Sherman (to Everyone): 7:01 PM: I’m pleased with my care at MSK Cal Van Zee (to Everyone): 7:05 PM: Anyone here in a PSMA Lu-617 trial?
Herb Geller (to Everyone): 7:05 PM: Yes, several guys
Peter Kafka (to Everyone): 7:07 PM: Sylvester has the record.
Jake Hannam (to Organizer(s) Only): 7:10 PM: Why do they still do bone scans these days – so old tech!
Cal Van Zee (to Everyone): 7:10 PM: For those in Lu-617 trial, would appreciate any offline feedback/side effects. I’m waiting/hoping to get into a trial.
Joe Gallo (to Organizer(s) Only): 7:11 PM: PSMA PET replaces CT and Bone scans. Assume they are trained to read them.
Pat Martin (to Everyone): 7:18 PM: Somatic gene testing
Peter Sherman (to Everyone): 7:21 PM: what is the difference between the types of genetic testing?
Pat Martin (to Everyone): 7:23 PM: Germline is what your Mom and Dad gave you. Somatic shows the mutations that your tumor has created.
Peter Sherman (to Everyone): 7:23 PM: thanks Pat
Pat Martin (to Everyone): 7:27 PM: They ran Somatic on the tumor they removed 5 year prior and determined that I might be eligible for Keytruda after ADT fails.
George (to Everyone): 7:28 PM: T3a: The tumor has extended outside of the prostate on one side. T3b: The tumor has extended outside of the prostate on both sides. T3c: The tumor has invaded one or both of the seminal vesicles, which are small bag-like organs near the bladder.
Henry (and Staci) Cornelius (Private): 7:30 PM: Rick, I have to step away for 5 minutes to tuck my daughter in. I’ll be right back.
Joe Gallo (to Everyone): 7:33 PM: https://embrlabs.com/products/embr-wave-2
Joe Gallo (to Everyone): 7:33 PM: for basic info
Peter Monaco (to Everyone): 7:35 PM: Signing off gents! See you next week!
Jeff Marchi (to Everyone): 7:39 PM: thanks George
George (to Everyone): 7:41 PM: You’re welcome Jeff.
Pat Martin (to Everyone): 7:53 PM: Does he have a quarterback?
AnCan – rick (to Everyone): 7:54 PM: Pomerantz at Dana Farber
Frank Fabish (to Everyone): 7:59 PM: got to sign off
Peter Sherman (to Everyone): 8:03 PM: got to go. Getting up early for work
Stan Friedman (to Everyone): 8:21 PM: see everyone next time.
Julian Morales-Houston (to Everyone): 8:21 PM: Dr E is my medical oncologist.
AnCan – rick (to Everyone): 8:24 PM: Eleni Efstathiuou
eric (to Everyone): 8:32 PM: Thanks for you time and good luck everyone. bye
Julian Morales-Houston (to Everyone): 8:32 PM: Thanks again – see you next week!
George (to Everyone): 8:32 PM: Thank you all. George
Nothing makes me, as AnCan’s Founder, happier than when our participants meet each other. Over 30% of our respondents said they made friends outside the groups, earlier this year.
New friends got made across international borders and they didn’t even have a condition in common!! . Mark Horn (on right) lives with metastatic bladder cancer for which AnCan does not as yet have a group. I have been supporting him personally and we keep in touch. Mark usually resides in Princeton, NJ but was on a trip to Panama to visit with his fiancee, Kalina, who lives in Brazil.
We had just seen Wang Gao Shan (on left) in our high risk/recurent/advanced prostate cancer group on Monday night, and I guessed he was in Panama too – since he could not be inTaiwan because of the time differnce and I did not think he was in Portland, OR. Gao Shan resides in one of those three sposts.
So I suggested that Mark and Kalina email Gao Shan as I didn’t have his phone number. Sure enough, there was an immediate response and last nifght, as you all see, they met for dinner in Panama City. Now I had never seen Gao Shan so I was as surprised as Mark. The story behind Wang Gao Shan’s Chinese name is for him to tell – I can just tell you that it means King of High Mountains … and that I am truly happy they got together!
And to boot, it turns out that both lived on a long street in London that runs through my teenage stomping grounds but they weren’t neighbors – that would have been too much!
Nothing makes me, as AnCan’s Founder, happier than when our participants meet each other. Over 30% of our respondents said they made friends outside the groups, earlier this year.