Editor’s Pick:Today’s Group is bookended by discussions with two Virginians around seeking access to LU177 PSMA – it ain’t easy but we are getting there! (rd)
Topics Discussed
NE/small cell disease needs a different approach; more chemo …. & more… and more!; back to the Trial for BRCA man; don’t forget Ken Pienta!; T returns post HT; stretch out those cramps!; cardiologist totally misses interaction between abi and Eliquis; more SAM – statins, aspirin, metformin; calcifications in urethra – but not stonesl; how best to reach your doc; man in mid-IMRT; John I’s loss and more; can we find Lu177 PSMA before teh cancer spreads too far?; is it worh following up with another Axumin scan?
Chat Log
Herb Geller (to Everyone): 3:24 PM: His clinical trial was https://clinicaltrials.gov/ct2/show/NCT03315871. He had 2 vaccines and a bispecific antibody.
AnCan – rick (to Everyone): 3:32 PM: PROSTVAC is the vaccine!!
Jake Hannam (to Organizer(s) Only): 3:40 PM: If he’s concerned about docetaxel megadoses every three, he could try weekly as I did.. Antonarakis is leaving in September
AnCan – rick (to Everyone): 3:51 PM: https://clinicaltrials.gov/ct2/show/NCT04825652
Ken (to Everyone): 3:52 PM: just keep going… my friend
Jake Hannam (to Organizer(s) Only): 4:02 PM: My understanding is that only 5 to 10 percent of patients do not have PSMA and some docs even question if the PSMA scan is even necessary. Len is right about about adding the old FDG scan.
Ken (to Organizer(s) Only): 4:03 PM: Jake its a higher number… closer to 30 percent.
Herb Geller (to Organizer(s) Only): 4:04 PM: The deep dive actually said that scans were not really necessary for Lu177
On July 22nd, we had so much fun once again with our very own Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group) lead our appropriately titled…”Art With Hannah Garrison“! It has a Saturday Night Live ring to it, don’t you think? She was requested to teach something relaxing and summer-y, and did she deliver!
We created an absolutely beautiful dusk beach setting, that is begging for a pineapple drink with a little umbrella in your hand. Last time we had an event to celebrate MS Awareness Month, but this time all were welcome. We saw members from our Blood Cancers, Prostate Cancer, Thyroid Cancer, MS Group, and more!
I promise this is SO easy and relaxing, so grab some supplies and have an hour of creative relaxation.
Supplies:
Acrylic paint or watercolor paint. (It will be watered down, so it doesn’t matter!) Colors – blue or aqua / dark blue / orange/ pink / purple. (colored pencils were also successfully used in this art project!)
Paint brush – round or flat.
Black crayon, but any dark color will be ok!
Water
Napkins
If you have any suggestions, or would like your art featured in the AnCan Art Gallery, please email me at alexa (at) ancan.org!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
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.
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
