Editor’s PickIf you are getting somatic NGS sequencing, is the prostate a good sampling source? (rd)
Topics Discussed
Germline genetic testing and HOXB13; is the chemo finally kicking in for Jake?; does the primary lesion represent metastatic disease?; more chemo vs clinical trial for BRCA man; Gleason 4 in your number? NO CURE!; Lu177 PSMA success; edema arising from using abi – see Len’s post on glucoccorticoids linked in Chat; being your best advocate pays; live ibn twopplaces- set up a 2nd medical team; ‘white foods’ during radiation; PSA fluctuates on abi + LHRH; switching to an AR blocker; hot flashes.
Chat Log
Pat Martin (to Everyone): 5:04 PM: Just curious…how important to follow cholestral while on aberiterone? I read through the circular included with my last delivery of my meds. It mentioned that they might be impacted. Mine have alwats been good.
Jeff Marchi (to Everyone): 5:05 PM: I just had mine tested and it was low as usual. Abi hasn’t seemed to change it for me
Len Sierra (to Everyone): 5:06 PM: Pat, It might be a good idea to have a lipid panel at least annually.
Pat Martin (to Everyone): 5:07 PM: Thanks all!!!
John A. (to Everyone): 5:07 PM: Can increase triglycerides often. Plus you’re probably on Lupron or something which can worsen the lipids. So, repeat ? once or twice a year according to your doc.
Pat Martin (to Everyone): 5:10 PM: Been asking my PCP…she says medicare doesn’t cover, but every five years, I replyI’ll pay. conversation ends. I’ll ask my MO.
Mark Perloe – Atlanta (to Everyone): 5:11 PM: They need to code as not a screening exam.
Pat Martin (to Everyone): 5:12 PM: Thanks again
John A. (to Everyone): 5:14 PM: I checked my Medicare ap but it wasn’t specific
Ted Healy- Portland, OR. (to Everyone): 5:25 PM: have to go. Thank you all!
Joel Blanchette – Reston, VA (to Everyone): 5:37 PM: I had SBRT, no major issurs
Julian Morales (to Everyone): 5:38 PM: I am having IMRT/VMAT sessions.
Mark Perloe – Atlanta (to Everyone): 5:39 PM: ViewRay MRIdian is the latest methodology. THere is another MRI Linac at MD Anderson. It is more precise than proton or cyberknife.
Sylvester Mann (to Everyone): 5:40 PM: Good seeing everyone. An emergency (not cancer related) came up. Have to go. Best regards to everyone. See you next session.
AnCan – rick (to Dennis Correia): 6:00 PM: Here you go Dennis https://rad-onc.arizona.edu/shona-t-dougherty-mb-chb-phd
Dale Barbour – San Diego (to Everyone): 6:06 PM: Thanks everyone for these illuminating discussions. Need to depart early tonight. See you all next time.
Don Price – Colorado (to Everyone): 6:15 PM: Thanks all for the discussion…leaving early.
Tracy Saville (to Everyone): 6:18 PM: great info as always. see you next week.
Len Sierra (to Everyone): 6:25 PM: In CHAARTED, the most significant survival advantage afforded to recipients of docetaxel were those with high volume metastatic disease, defined as less than 4 bone lesions or bone lesions outside the axial skeleton or presence of visceral metastasis. Low volume, or oligometastatic, patients did not significantly benefit.
AnCan – rick (to Everyone): 6:26 PM: Of course, CHAARTED – I stand corrected!
Len Sierra (to Everyone): 6:26 PM: Too many trial names to remember!!!
Mark Perloe – Atlanta (to Everyone): 6:27 PM: I have to run. Hope you all have a good week. Thanks.
Pat Martin (to Everyone): 6:36 PM: Like my MO stated let’s debulk the disease.
Pat Martin (to Everyone): 6:41 PM: I have a deal with my abi provider to ship 3 months a time so I can travel. Just have to work it out with insurance.
Paul Freda (to Everyone): 6:44 PM: Need to leave early tonight. See all next week.
Pat Martin (to Everyone): 6:58 PM: see ya all next Tuesday
Martin Wice (to Everyone): 6:59 PM: I contacted the company to be part of the study but never heard back.
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, July13, 2021
Editor’s Pick: How bad is dairy? Leading to a great discussion around diet and nutrition this week. And a new nutrient that may prove effective … or may just be snake oil? But let’s understand it first. (rd)
Redirecting treatment for recurrence; introducing Provenge; Keytruda suitabiltiy; next step after PARP-I fails for BRCA+ man; drug holiday comin to an end; so what is Free Testosterone; bicalutamide still controls advanced disease: is dairy really off limits?; avoid 3D-conformal RT – old technology; steroids and abiraterone (see above)
Chat Log
Pat Martin (to Everyone): 3:18 PM: I missed what his PSA is currently.
Bill Franklin (to Everyone): 3:20 PM: .06 last time it was measured.
John Ivory (to Everyone): 3:21 PM: https://www.scripps.org/physicians/4526-michael-kosty?tab=overview John Ivory (to Everyone): 3:23 PM: “genitourinary” medical oncologist
John Ivory (to Everyone): 3:25 PM: https://providers.ucsd.edu/details/32684/medical-oncology-cancer
rick stanton (to Everyone): 3:28 PM: radiation oncologists at UCLA indicate 0.6 PSA should be able to be detected via the newly approved PSMA PET scan
Jake Hannam (to Everyone): 3:29 PM: Axumin or PSMA Pet/CT
rick stanton (to Everyone): 3:30 PM: the scheduling wait time for a PSMA PET scan at UCLA is running about 6 weeks – it’s packed!
Ancan – rick (to Everyone): 3:31 PM: Dr. Rana McKay https://profiles.ucsd.edu/rana.mckay
rick stanton (to Everyone): 3:32 PM: I recommend Dr. Rana McKay as well.
Ancan – rick (to Everyone): 3:33 PM: Right now, Rick, we probably don’t need the PSMA R11 at UCLA or UCSF. Pylarify is now becoming readily available, and the price is way lower.
Joe Gallo (to Everyone): 3:35 PM: PSMA PET is free at VA in LA for Veterans
rick stanton (to Everyone): 3:35 PM: I recommend getting germline and tumor genetic testing done from tumor tissue of your removed prostate. This can change the treatments you recieve for the better!!
John Ivory (to Everyone): 3:37 PM: Hot flash device: https://embrlabs.com/pages/hot-flashes
Ancan – rick (to Everyone): 3:40 PM: rd@ancan.org peterk@ancan.org herb@ancan.org
Herb Geller (to Everyone): 3:41 PM: Munveer Bhanjoo, MD at Scripps. He says he is specializing in GU. His office is at the main Scripps on Torrey Pines Rd.
Bill Franklin (to Everyone): 3:42 PM: bfranklin@ancan.org
Pat Martin (to Everyone): 3:43 PM: trazadone works well for me.
Pat Martin (to Everyone): 3:44 PM: For sleep
Carlos Huerta (to Everyone): 3:45 PM: Lorazepam 1 mg at bed time for sleep.
John Ivory (to Everyone): 3:47 PM: I’ve used trazadone for decades, 50 mg
Bruce Bocian (Private): 3:45 PM: I have singled out the two docs you mentioned to me. Where would Dr. Brian Moran fit in the picture. You recommended him to me many years ago and I did see him back in the day.
Ancan – rick (to Bruce Bocian): 3:50 PM: He is a radiation oncologist
Jeff Marchi (to Everyone): 3:51 PM: depo provera is one hormone treatment lasts 3 months. there is someone else in the group that has had success with a different hormone treatment, not here apparently. really helps hot flashes.
John Ivory (to Everyone): 3:52 PM: My comment was regarding sleep, not hot flashes
rick stanton (to Everyone): 3:52 PM: what was your TMB?
Jeff Marchi (to Everyone): 3:52 PM: the hot flashes are what wakes most of us. they call them night sweats also
Herb Geller (to Everyone): 3:55 PM: What is microsatellite instability-high cancer? Describes cancer cells that have a high number of mutations (changes) within microsatellites. For example, microsatellite testing that shows mutations in 30% or more microsatellites is called microsatellite instability-high. Microsatellites are short, repeated sequences of DNA.
rick stanton (to Everyone): 3:56 PM: Microsatellite instability (MSI) is the condition of genetic hypermutability (predisposition to mutation) that results from impaired DNA mismatch repair (MMR). The presence of MSI represents phenotypic evidence that MMR is not functioning normally. Why MSI and TMB (Tumor Mutational Burden) can help predict responsiveness to Keytruda is the concept of “many shots on goal” for T Cell recognition of mutations presented by the tumor. CD8 T cells perform the tumor killing – so if CD8 T cells have more opportunities to recognize many mutations – keytruda has a better chance of working – very crude – but wildly…. it’s predictive to a degree
Carlos Huerta (to Everyone): 4:03 PM: What genetic test is suggested? It must be blood to see what the currrent cancer make-up is, correct?
Herb Geller (to Everyone): 4:03 PM: Circulating tumor cells (CTCs) from blood can be analyzed
rick stanton (to Everyone): 4:03 PM: depends what you are looking for
John Ivory (to Everyone): 4:06 PM: Sorry to hear that, Jake. Very stressful.
Jake Hannam (to Everyone): 4:09 PM: Thanks, John. I’m trying to stay cool about all this.
Len Sierra (to Everyone): 4:09 PM: Somatic Reversion of Germline BRCA2 Mutation Confers Resistance to Poly(ADP-ribose) Polymerase Inhibitor Therapy Two types of somatic reversion mutations have been described: a direct reversion of the wild-type sequence or a secondary mutation that restores the open reading framea ascopubs.org/doi/full/10.1200/PO.17.00044
Herb Geller (to Everyone): 4:11 PM: What is microsatellite instability-high cancer? Describes cancer cells that have a high number of mutations (changes) within microsatellites. For example, microsatellite testing that shows mutations in 30% or more microsatellites is called microsatellite instability-high. Microsatellites are short, repeated sequences of DNA.
Herb Geller (to Everyone): 4:11 PM: Yes, certainly a somatic reversion of the tumor is possible, but the germline stays mutated
Len Sierra (to Everyone): 4:12 PM: Agreed, Herb.
Ken (to Everyone): 4:15 PM: Not at the time he decided to start. The comment was that most immuno type treatments seems to work best early in the disease cycle. I think I would start the work to get it scheduled as soon as you can work it in.
rick stanton (to Everyone): 4:17 PM: thank you all – look forward to next time – need to hop off now – best, rick stanton
Jake Hannam (to Everyone): 4:20 PM: A FMI blood test might be in order for Dennis
Dennis Correia (to Everyone): 4:27 PM: What is a FMI blood test?
Jake Hannam (to Everyone): 4:28 PM: Foundation Medicine liquid biopsy or equivalent
Peter Kafka (to Everyone): 4:28 PM: Foundation Medicine (FMI)
Jake Hannam (to Everyone): 4:29 PM: https://www.startwithstepone.com/ Your doc will have to request it, Dennis
Jim Ward (to Everyone): 4:38 PM: Can you spell Tiltify?
Pat Martin (to Everyone): 4:39 PM: could you give us the web site?
Herb Geller (to Everyone): 4:43 PM: https://www.filtricine.com Here is a link to their patent for this diet: https://patents.google.com/patent/US20200297679A1/en Here is a reference to a recent paper that says there is a suggestion that dairy may increase risk but they also say the evidence is weak: Review World J Mens Health . 2021 Jul;39(3):419-428. doi: 10.5534/wjmh.200051. Epub 2020 Jul 27. Milk Consumption and Prostate Cancer: A Systematic Review Alex Sargsyan 1 , Hima Bindu Dubasi 2 Affiliations expand PMID: 32777868 PMCID: PMC8255404 DOI: 10.5534/wjmh.200051
Jake Hannam (to Everyone): 4:52 PM: And yet calcium + vitamin D is recommended by many docs for men on ADT. Confusing!
Len Sierra (to Everyone): 4:54 PM: Free PCF Health and Wellness in Prostate Cancer, https://www.pcf.org/wp-content/uploads/2016/10/PCF_HW_Guide.pdf
Ancan – rick (to Peter Kafka): 4:56 PM: Peter – Buzz would argue with you about Colin Campbell . He worked with him at Cornell – that’s where Buzz got his PhD
Bruce Bocian (to Everyone): 4:59 PM: Have to run
Jim Ward (to Everyone): 5:00 PM: Gotta hop off the call, gents; good to see everyone. Have a good night.
Herb Geller (to Everyone): 5:00 PM: I gotta go now.
Pat Martin (to Everyone): 5:02 PM: See you next Monday
John Birch (to Everyone): 5:06 PM: Need to go, thanks everyone!
John Ivory (to Everyone): 5:15 PM: ¡Ciao till next time!
George (to Everyone): 5:16 PM: Thank you Peter. Fine job. Thank you all.
On July 7th, Dr. Niels Olson(Pathologist, researcher, and Chief Medical Officer, Defense Innovation Unit In Mountainview, California) spoke at our Active Surveillance Virtual Support Group with a special presentation titled “Son, I have prostate cancer. What do I do now?”
Dr. Olson shared about his prostate cancer research journey, both professional and personal. Dr. Olson’s father’s diagnosis with prostate cancer set Olson on this path.
Watch him share his research using machine learning, or “artificial intelligence,” to teach computers how to read slides from radical prostatectomies and biopsies. In some circumstances, machines can outperform humans. But Dr. Olson said the machines are not ready to take over. He explains some of the finer points of pathology in this video.
We want to thank Dr. Olson for answering questions!
Watch here:
(Slides to be posted here soon!)
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
Dr. Donald Abrams (Head of the Osher Integrative Cancer Center at UCSF and former Chief Oncologist at Zuckerberg San Francisco General) presented a webinar on June 24th titled “Prostate Cancer Prevention and Treatment: An Integrative Approach“
This webinar is wide reaching and covers a variety of topics, such as diet, exercise, stress, supplements, medical marijuana (he was an early proponent), and much more.
Here is what Rick Davis has to say about Dr. Abrams
I know Dr. Abrams for many years – we have worked a couple of panels together, and Dr. A has been a member of treating teams for men with advanced disease that AnCan has supported.
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, July 5, 2021
Apologies for starting the recording late this week – but we made up for it by going almost 1 hour overtime! That’s what happens when the Calendar causes us to miss a week.
Editor’s Choice: Maybe we can control hot flashes after all …… and dexmethasone may ease chemo lows (rd)
Topics Discussed – order may be a little off this week …. sorry!
Uro fails to follow up w. denovo Mx Dx; neighbor provides care & guidance where not really wanted; managing advanced PCa since 2009 with IHT; the Embr gizmo brings succes; starting Ac225+pembro+enz trial; Pylarify now available; genetic testing; orchiectomy v LHRH; Orgovyx; Stability continues for man who started with 3000 PSA; 20th chemo coming up!; Dex may ease chemo low; Medical MJ for appetite and more; huge fatigue – but maybe overdoing it?; negotiating a drug holiday; PSA low end for a Pylalrify result; darolutamide could work; switching docs at The James; chemo brings results with just 6 sessions
Chat Log
John Ivory (to Everyone): 5:29 PM: My father & uncle had prostate cancer; my mother had breast cancer, but my germline was negative
John Ivory (to Everyone): 5:33 PM: abiraterone (sometimes known by brand name Zytiga
Dennis Correia (to Everyone): 5:39 PM: Dr. Parminder Singh at Mayo Hospital in Phoenix.
scott (to Everyone): 6:20 PM: Sorry for the repeat, how do you spell the specific oncologist from earlier?
Ancan – rick (to Everyone): 6:24 PM: Genitourinary medical oncologist
David Muslin (to Everyone): 6:24 PM: I give pat alot of credit for helping however, you can’t help someone who does not want to help themselves.
George (to Everyone): 6:34 PM: I signed up but was rejected because I don’t have hot flashes (yet).
John Ivory (to Everyone): 6:39 PM: For those on abiraterone, a reminder that the instructions say no grapefruit
Jeff Marchi (to Everyone): 6:40 PM: same with viagra!
John Ivory (to Everyone): 6:46 PM: SO good to hear, Ken!
David Muslin (to Everyone): 6:47 PM: You are an inspiration Ken
Peter Kafka (to Everyone): 6:48 PM: Ken, you are amazing! Good going
Bruce Bocian (to Everyone): 6:52 PM: Anyone try the Prolaris genetic test kit?
Len Sierra (to Everyone): 6:54 PM: Prolaris is useless for guys who are high risk/recurrent/advanced, i.e., this group.
Bruce Bocian (to Everyone): 6:54 PM: Ok thanks, Im thinking for my sons
Jimmy Greenfield (to Everyone): 6:54 PM: When I was taking dexamethasone I was cleaning the house constantly. My wife was sad when I was done -wanted me to get a scrip just for that
George (to Everyone): 6:55 PM: Woodburn Nuclear Medicine in Annandale Virginia for Pylarify PSMA-PET scan.
Jefferson (to Everyone): 6:55 PM: wwhere is fairfax ?
George (to Everyone): 6:56 PM: Fairfax 10 mi from Washington DC
Joel Blanchette (to Everyone): 6:57 PM: PSMA scan at Woodburn Nuclear Medicine & Metro Region PET Center
Pat Martin (to Everyone): 7:00 PM: Some tumors can make the T they need. As was explained by my MO
John Ivory (to Everyone): 7:12 PM: My question isn’t prostate related (is for My Mom), so I’ll just post it here. I’ll also go to caregivers tomorrow. Does anyone have any experience using medical marijuana as an appetite stimulant? Mom is down to 78 pounds from 100+ Looking for any way to stimulate her appetite
Jefferson (to Everyone): 7:16 PM: thank you ALL my oncologist has order blood genetic testing and was approved full help with the cost. I BELIEVE you have given me something to think about.
Len Sierra (to Everyone): 7:16 PM: The only cannabis drug approved by FDA for appetite stimulation is called Marinol (dronabinol). Marinol: https://www.accessdata.fda.gov/drugsatfda_docs/label/2005/018651s021lbl.pdf
John Ivory (to Everyone): 7:17 PM: Thanks Len–will look into that too
Pat Martin (to Everyone): 7:23 PM: Comprehensive Metabolic Panel
Pat Martin (to Everyone): 7:31 PM: see all next Tues.
Len Sierra (to Organizer(s) Only): 7:32 PM: Gotta drop off, guys. Have a good week.
Bruce Bocian (to Everyone): 7:39 PM: Good night!
John Ivory (to Everyone): 7:49 PM: I’m on abiraterone w/o mets
Jeff Marchi (to Everyone): 7:51 PM: problem getting insurance to pay without metastasis
Herb Geller (to Organizer(s) Only): 7:53 PM: I gotta go soon. Bedtime!
Ancan – rick (to Everyone): 7:59 PM: Amir Mortazavi
Herb Geller (to Everyone): 7:59 PM: Gotta go. See you all Tuesday.
John Ivory (to Everyone): 8:00 PM: @Jeff wow, I got lucky then–maybe bc I failed surgery & radiation… Both ACA plan & now Medicaid have paid (I’m too young for Medicare)
George (to Everyone): 8:01 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/amir-mortazavi
A real friend is one who walks in when the rest of the world walks out. – Walter Winchell
I really love this quote. Having cancer, serious, chronic, or rare illness is so isolating. Even if you have ample support from family and friends, nobody knows your situation like a peer does. It’s beyond comforting to join my thyroid cancer virtual support group and instead of explaining a symptom / side effect, I can just share what is going on, with reassuring nods, and validating comments.
At AnCan, support is personal. Our support group moderators are incredible people who sign up to help fellow peers just like them. They are here to celebrate the good days, mourn the bad days, and even fellowship during the blah days in-between. It’s not surprising that our people even gain deep, meaningful friendships.
Rick and I received this breathtaking photograph of our MS support group moderators Dan and Jennifer Digmann and Kim Stroeh meeting up together in Iowa. This makes our hearts so happy, and is really what AnCan is all about. Never being alone, in whatever you are facing. Our MS group is such a great example of community.
Thanks, Dan, Jennifer, and Kim for the smile today.
Here’s to friendships, and support wherever you are!
For information on our peer-led video chat MULTIPLE SCLEROSIS VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
At AnCan, we love any reason to celebrate, and this is a GREAT reason!
Our Active Surveillance Prostate Cancer Moderator Howard Wolinsky and his wife Judi celebrated their 50th wedding anniversary on June 29th. Surely this picture of them on their wedding day will make your heart melt!
All of us want to give a huge THANK YOU to Howard for all he does for AnCan and the AS community. We are so grateful for Howard providing thoughtful discussion topics, insightful speakers, and bringing important subjects to the AS community to the forefront.
Judi is also beloved in the community, as the way Howard highly speaks of her would make anyone a fan as well.
Happy Anniversary, Judi and Howard! Here’s to 50 years of being great together, and may there be many, many more.
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 June 23rd, we had the pleasure of having Stephanie Weisman!
Stephanie is Artistic Director and Founder of The Marsh, and has been personally touched by her own and loved ones’ cancer experiences.
June’s Solo Arts Heal was the grand premiere of “Stephanie’s Tidbits on Living While Maybe Dying“. This solo performance short is focused on Cancer Victim/Survivor PTSD (post-traumatic stress disorder). It explores what recovery means when the outlook is unpredictable, And how one copes, both at survival and creative levels, with the stress of cancer, its treatment and moving beyond.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
On June 30th, we hosted a fascinating and informative webinar titled “Advocating for Rare Diseases“.
We had Katelyn Laws (Rare Disease Legislative Advocates Program Coordinator) give a great outline of what advocacy is, what types of advocacy there are, and how to do it. AnCan’s Sarcoidosis virtual support group moderator Cathleen Terrano moderated and sparked fascinating conversation with our panelists Ritchie Johnson (Renal Medullary Carcinoma), Charles Mickles (Young Onset Parkinson’s Disease), and Trina Massey Davis (Sarcoidosis).
I had the pleasure of jumping in for the Q&A segment, which was a wonderful (and real!) discussion many topics, such as discouragement when advocating, how to write out your story, and more.
Watch this phenomenal presentation here:
Special thanks to Myovant Sciences – Pfizer, and Foundation Medicine for sponsoring this webinar.
On June 29th, we hosted an exceptionally relevant webinar titled “Is Active Surveillance Safe for Black Men?”. Dr. Willie Underwood (Board Certified Urologist, Executive Director of Buffalo Center for Health Equity, and American Medical Association Board of Trustees member) and Anthony Henry (First Vice President of The Walnut Foundation) joined us for this important conversation.
Dr. Brandon Mahal was scheduled to join us, however he is actively volunteering at the Miami collapse area. Thank you Dr. Mahal for helping, and we hope to see you soon!
We want to sincerely thank Dr. Underwood and Anthony for answering questions, and providing their perspectives.
Watch this fascinating presentation here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
