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.
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
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 14, 2021
Editor’s Pick What are the options when 27 cycles of chemo to treat recurrent disease gets tough to handle? (rd)
Topics Discussed
Initial treatment options for locally advanced Dx; what next after 27x chemo sessions w. PSA of 900; is ATM mutation suited to olaparib?; continuing cyclophosphamide; plan beyond the next Tx; Lupron + abiraterone + prednisone; rechallenging abi on edema after after break; Embr wrist gizmo may help with hot flashes; RO does not understand ‘pelvic girdle’RT; treating the primary tumor; what’s considered SBRT?
Chat Log
Jake Hannam (to Everyone): 3:30 PM: Axumin
Pat Martin (to Everyone): 3:31 PM: Much more available as the half-life is far longer than the Gallium isotope.
AnCan – rick (to Everyone): 3:32 PM: herb@ancan.org
Jake Hannam (to Organizer(s) Only): 3:40 PM: olaparib for atm?
Jim Marshall – Alexandria, VA (to Everyone): 3:49 PM: Love to know about ATM too, for I have a bad ATM gene. Jim Marshall
David Muslin (to Everyone): 4:35 PM: Margaret, Director of Customer Experience, Embrlabs.com Embr Labs Support email addressee support@embrlabs.com
James Barnes (to Everyone): 4:42 PM: HI David I am doing well thanks. Certainly dealing with the hot flashes asd well. My remedy is placing something cold on my wrists and inside the elbow and then my forehead which seems to make the flashes pass quickly.
AnCan – rick (to Everyone): 4:42 PM: https://www.prostatecancer.news/2021/05/new-guidelines-for-salvage-radiation.html https://www.prostatecancer.news/2018/10/whole-pelvic-salvage-radiation-short.html
Joel Blanchette – Reston, VA (to Everyone): 4:44 PM: The pelvic girdle is a ring-like bony structure, located in the lower part of the trunk. It connects the axial skeleton to the lower limbs. In this article, we shall look at the anatomy of the pelvic girdle – its bony landmarks, functions, and its clinical relevance.
Pat Martin (to Everyone): 4:46 PM: I asked my RO for an idea of where he was rdiating…he brought me into his office and showed me the graph of my pelvic area and the shape of the radiation scope.
Julian Morales (to Everyone): 4:47 PM: good to know – I am getting ready to start my radiation.
David Muslin (to Everyone): 4:59 PM: Have great night guys. Thanks for sharing and caring as always
George (to Everyone): 5:00 PM: thank you all. very good for me.
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 7, 2021
Editor’s Pick: Wow – over 50 in the Room this week, so lots of great stuff!!! From conventional vs unconventional ways to treat advanced PCa to multiple testimonies on how exercise combats fatigue; and, LHRH & heart risk – you decide! (rd)
Topics Discussed
ASCO ’21 Quick Highlights; Centers of Excellence vs independent GU Med Oncs; LHRH comparisons; compassionate use for Lu177 PSMA; combatting fatigue w. exercise; itching and rash site reaction to Lupron; enzalutamide vs apalutamide; predinisone use when diabetic; how long can you stay at your PSA nadir?; mistaken testosterone reading gets a laugh; lipid panel considerations; more & more chemo … & still more!; LHRH & heart risk again today; health anxiety raises its ugly head.
Chat Log
AnCan – rick (to Organizer(s) Only): 5:32 PM: 47 online + callers – I think that’s a record!
Jake Hannam (to Organizer(s) Only): 5:33 PM: I think so too
Len Sierra (to Organizer(s) Only): 5:33 PM: Yes! Amazing! Btw, now you can see why I could never regurgitate Howard’s incredibly strange and complex journey!
richard wassersug (to Everyone): 5:46 PM: Rick, You are right!
Bill Franklin (to Organizer(s) Only): 5:48 PM: This might be the biggest group I’ve seen yet. I still had a little a day or two after the treatment. I was good for a long time but then, unfortunately it came back. I’ve actually been having a lot of issues lately. Hopefully you’ll get to feeling better soon.
Mark Perloe (to Everyone): 5:55 PM: https://clinicaltrials.gov/ct2/show/NCT00859781?term=LU+177&cond=prostate+cancer&cntry=US&state=US%3ACA&city=Los+Angeles&dist=50&draw=2&rank=3
Pat Martin (to Everyone): 5:59 PM: Resistance training also builds BONES. Absolutely necessary while on ADT
Joel Blanchette – Reston, VA (to Everyone): 5:59 PM: We are at 50 in the room.
Mark Perloe (to Everyone): 6:02 PM: If you are on a statin, Co Q10 can reduce muscle issues.
AnCan – rick (to Jimmy Greenfield): 6:29 PM: What did we do for you today,
Jimmy G Jimmy Greenfield (Private): 6:30 PM: Just being yourselves, fantastic.
Paul Freda (to Everyone): 6:46 PM: I have the belly problem too. It is very frustrating and I have not been able to get rid of it. ….. I do feel better about it when resistance training exercsing at the fitness center.
Jimmy Greenfield (to Everyone): 6:48 PM: I’m with you Paul. Better to be strong-fat!
Bill Franklin (to Everyone): 6:51 PM: I did just shy of 2 years on lupron and never experienced any type of itching, rash, or hives after my shots.
Jeff Marchi (to Everyone): 6:53 PM: 4 years and I have no issues, can’t even remember which hip it went in
Pat Martin (to Everyone): 6:53 PM: How big of a percentage of T production is covered by Abi alone?
Herb Geller (to Everyone): 6:56 PM: Theoretically, Abi alone should do the job. But it requires some risk taking to go that route. Abi should block all T production independently of LHRH.
Jake Hannam (to Everyone): 6:59 PM: Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones by Wassersug, et al
Mark Perloe (to Everyone): 7:00 PM: BNP is used in US to monitor CHF, but not in healthy people.
Pat Martin (to Everyone): 7:03 PM: I’ll be getting an Eligard shot and PSA test this Wednesday.
AnCan – rick (to Len Sierra): 7:09 PM: SSRIs are anti-depression; he needs an anti anxiety
Len Sierra (Private): 7:09 PM: They are also anxiolytics, Rick. Anyway, anxiety and depression go hand in hand.
AnCan – rick (to Len Sierra): 7:11 PM: don’t agree with you – I don’t suffer from anxiety
Jimmy Greenfield (Private): 7:11 PM: Yes! Not nervous, I’m just excitable you know. Shingles vaccine shot is killing me!
Len Sierra (Private): 7:12 PM: Because you’re taking an SSRI or SNRI.
