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
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.
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.
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 21, 2021
ASCO 2021 REVIEW
Prior to the start of today’s Support Group meeting, Herb Geller and Len Sierra highlight the most significant advanced prostate cancer papers from this year’s ASCO Conference. If you choose to skip directly to the ‘regular’ session, please go to 56:40 .
REGULAR SUPPORT GROUP MEETING
Editor’s Pick:Herb’s & Len’s review of ASCO is definitely worth a listen. But at the other , very basic extreme, Peter raised an important topic – how to remember to take your daily meds! (rd)
Topics Discussed
Consider a drug holiday after 7 yrs ADT; early Dx of BRCA in advanced PCa; what’s left after trying everything SOC?; nocturia; remembering to take your pills; consideration when starting ADT; insurance complicates radiating primary for Mx man
Chat Log
Mark Perloe (to Everyone): 4:31 PM: How long was ADT+abiraterone in the Peace 1 study
AnCan – rick (to Everyone): 4:36 PM: SOC in PEACE includes docetaxel. I read the purple slide differently
AnCan – rick (to Everyone): 4:45 PM: Sip-T = Provenge
Ted Healy – Portland, OR. (to Everyone): 4:55 PM: is this the interferon that has been used in the past for cancer and Hepc patients?
Ken (to Everyone): 4:56 PM: Herb your doing great….
Ted Healy – Portland, OR. (to Everyone): 4:57 PM: gotta go. Thank you so much!
Jake Hannam (to Everyone): 5:00 PM: Thank you Len and Herb!
Len Sierra (to Everyone): 5:01 PM: our pleasure and privilege!
Ken (to Everyone): 5:01 PM: many thanks….
AnCan – rick (to Everyone): 5:23 PM: herb@ancan.org and len@ancan.org
Mark Perloe (to Everyone): 5:46 PM: But I think he needs ADT and abiraterone first. If he has a few isolated lesions, I wonder if SBRT might be appropriate if a low dose of tumor. I went to UCLA.
John Ivory (to Everyone): 6:08 PM: Is this she? Research doesn’t look like a GUMO https://www.urmc.rochester.edu/people/22423597-adrienne-victor
Joe Murgia (to Everyone): 6:12 PM: I just looked up Dr Peter Van Veldhuizen at U of R and he is chairman of GU Oncology
Len Sierra (to Everyone): 6:18 PM: https://pubmed.ncbi.nlm.nih.gov/30236961/ Evaluation of Response to Enzalutamide Consecutively After Abiraterone Acetate/Prednisone Failure in Patients With Metastatic Castration-resistant Prostate Cancer
Jake Hannam (to Everyone): 6:20 PM: darolutamide or Nubeqa
Russ (to Everyone): 6:22 PM: Gotta run guys. Have a great night.
AnCan – rick (to Everyone): 6:27 PM: Myrbetriq
Joe Gallo (to Everyone): 6:28 PM: tamsulosin = FLOMAX
AnCan – rick (to Everyone): 6:29 PM: pumpkin seed oil
John Ivory (to Everyone): 6:29 PM: Quick PSA (public service address): Wednesday evening, turn off Netflix/HBO/basic cable and turn on our next Solo Arts Heal episode! “Living While Maybe Dying,” Performance about health anxiety with discussion. 10:30 PM ET/7:30 PT (also recorded for later viewing). https://ancan.org/solo-arts-heal/
Pat Martin (to Everyone): 6:32 PM: Zytiga 2x a day?
Joe Murgia (to Everyone): 6:32 PM: I use the upside down bottle too!
Blee in Virginia (to Everyone): 6:34 PM: They make those things for 2, 4,6 times per day Pat Martin (to Everyone): 6:34 PM: I use two weekly pill storages. One has a.m./p.m. I use a separate one for my Abi. one of the benefits of getting up through the night.
John Ivory (to Everyone): 6:37 PM: Also, if you didn’t attend Solo Arts Heal with our own Jimmy Greenfield last month, you owe it to yourself to have a look/listen after this call! https://www.youtube.com/watch?v=vp1xBkc3am8&t=1s
George (to Everyone): 6:38 PM: Pill organizer several times per day https://flents.com/products/maxi-pharmadose-pill-planner?variant=35230637686940¤cy=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gclid=CjwKCAjw8cCGBhB6EiwAgORey8B_S4j34lw0AuB9MJ8lRi5CC_GpMJp_grpNMb6RJnZd2XleXVXMVBoCq4IQAvD_BwE
John Ivory (to Everyone): 6:42 PM: Relu GO lix. Yes, Or GO vix is correct. Always emphasis on the GO. Not sure why my mic isn’t working tonight
Mark Perloe (to Everyone): 6:47 PM: Rick, I light up like a searchlight at 0.3
Jake Hannam (to Organizer(s) Only): 6:48 PM: Antonarakis told Joel he expects PSMA scans to be available in July at Hopkins, anyway
AnCan – rick (to Everyone): 6:48 PM: But am I doing better in pronunciation Mr .I?
Herb Geller (to Organizer(s) Only): 6:50 PM: I think it will be more generally available very soon.
Marty Rotter (to Everyone): 6:52 PM: I stayed on 1 month Lupron for recurrence before having salvage radiation. Started with 30 days to see how it would effect me and stayed on it monthly for 5 more months.
Joe Gallo (to Organizer(s) Only): 6:52 PM: The Pyl may be more readily available since it has longer half life vs. G68 which is only hours – needing a generator or cyclotron.
Pat Martin (to Everyone): 6:52 PM: Get another PSA test to determine doubling time.
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.
