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.
