For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=... if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.
No meeting next week in the 5th week of the month, but we have two webinars:
Managing Your Medical Team – 8.00 pm Eastern, Tuesday, 8/31 Register at https://bit.ly/3jGNN1V
A Layman’s Guide to Medical Research Language, Wednesday, 9/1 at 8.00 pm Eastern at https://www.gotomeet.me/AnswerCancer ; no pre-registration required.
Editor’s Pick: Drug holiday suddenly becomes an option ….. yes or no?? (rd)
Topics Discussed
Low PSA, hi Gleason man goes through many treatments; who to see now Dr. Alicia Morgans has moved on; considering Intermittent Hormone Therapy; recurrence rears it’s head – Dr. M has moved on; “I’m mCRPC” – what does that open up?; Provenge; carcinoembryonic marker …. for PCa?? ; handling neuropathy; one of our regualars faces shoulder surgery
Chat Log
Dell (to Organizer(s) Only): 3:09 PM: Off Eligard since Dec 2020, PSA less than 0.1 and with a rising testosterone. Last week the TS was 369 and this was the first increase in PSA to 0.5. Just looking to know who is the new recommendation for Chicagoland (Northwestern) with Dr Morgans gone.
Joe Gallo (to Everyone): 3:12 PM: A drop-in presentation sponsored by the AS group. Open to all on a drop in basis at Barniskis. First Wednesday program scheduled for 8-9:30 p.m Eastern on September 1, 2021 is titled “A Layperson’s Guide to Reading Medical Research” Aurora Esquela Kerscher, PhD, is an associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center, Eastern Virginia Medical School in Norfolk, Virginia.
Larry Fish (to Everyone): 3:15 PM: where those spots all on Prostate – or had it already spread. So why radical prost…
Joe Gallo (to Everyone): 3:16 PM: Also a webinar Webinar: Managing Your Medical Team on Tuesday August 31st at 8:00-9:30 pm ET. Register now: https://bit.ly/3jGNN1V Larry Fish (to Everyone): 3:20 PM: chemo?
Herb Geller (to Everyone): 3:20 PM: Genetics?
Paul Freda (to Everyone): 3:20 PM: What was the name of that Firmagon oral substitute ? Anyone ?
Herb Geller (to Everyone): 3:20 PM: Orgovyx
John Antonucci (to Everyone): 3:21 PM: AKA relugolix
Joe Gallo (to Everyone): 3:21 PM: Daily pill
Stan Friedman (to Everyone): 3:21 PM: genetic testing?
Larry Fish (to Everyone): 3:23 PM: So what is he doing now – exaCTLY? what trials? chemos? ADL? exercise?
AnCan – rick (to Organizer(s) Only): 3:27 PM: Kelly may be good BUT how come no chemo???
Larry Fish (to Everyone): 3:28 PM: wow – pretty knowledgeable! how is his Quality of life now?
Pat Martin (to Everyone): 4:05 PM: Any doubling time
AnCan – rick (to Everyone): 4:07 PM: Pylarify 18F DcfPyl PSMA test. Made by Lantheus …. https://pylarify.com
Pat Martin (to Everyone): 4:12 PM: I’m sorry for my ignorance…in the Northwest we have a Tri-Cities but no Quad-Cities. What are they?
Herb Geller (to Everyone): 4:13 PM: I just looked it up. It is a group of cities on the Illinois-Iowa borde
Pat Martin (to Everyone): 4:14 PM: Thanks
Les Schjelderup (to Everyone): 4:15 PM: That is where I live also.
Pat Martin (to Everyone): 4:19 PM: My experience…25 months of ADT Lupron and Abiraterone. Had a vacation of several months. PSADT was 1.5 months and had an Axuminn scan to pinpoint the problems. Then went back to ADT, Eligard and Abi. Way fewer side effects and better energy.
John Ivory (to Everyone): 4:19 PM: Thanks Pat
Jake Hannam (to Organizer(s) Only): 4:35 PM: oral chemo? cyclophosphamide? not a taxane – mght work for him with lower PSA than mine
Jim Ward (to Everyone): 4:42 PM: Can someone spell the name of the report that was referenced, beginning with a “k”?
John Antonucci (to Everyone): 4:43 PM: caris
Jim Ward (to Everyone): 4:43 PM: Got it – thanks!
AnCan – rick (to Everyone): 4:43 PM: Caris ……. it’s a competitor to FMI
Paul Freda (to Everyone): 4:47 PM: How to spell lutecian ? Anyone ?
Len Sierra (to Everyone): 4:47 PM: Lutetium
Herb Geller (to Everyone): 5:04 PM: I gotta go soon
Stephen Saft (to Everyone): 5:07 PM: I am 6’5″ and 225lbs and ask about this all the time. It is mostly ignored by the Drs i have spoken to. Doesn’t make sense to me.
For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=… if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.
Editor’s Pick:11,201 could be an alltimer’s AnCan record opening PSA – and now it’s undetectible!! (rd)
Topics Discussed
PSA of 11,000+ drops to undetectible!; Keytruda sensitivity test for a BRCA2 guy entering trial; abi or PARP for another BRCA2 man; AnCan stalwarts uses BAT until Lu177 PSMA available; Lu177 PSMA Manaed Care Access trials; lipid panel discussion and new drug that cuts LDL; Embr hot flash gizmo in action; IMRT or SBRT when treating the gland alone for Mx men; side effects during treatment from gland IMRT start to hit; can a man with recurrent PCa consider a drug holiday?; serious rash from Orgovyx is news to Myovant
Chat Log
Jim Ward (to Everyone): 3:04 PM: You’re cat is way too uptight, Jimmie.
Jimmy Greenfield (to Everyone): 3:06 PM: Stressed!
Joe Gallo (to Organizer(s) Only): 3:30 PM: Would a PSMA PET be helpful – more sensitive for mets
Jake (to Everyone): 3:32 PM: peterk@ancan.org
Carlos Huerta (to Everyone): 3:42 PM: It is being done UCLA. Dr Weidhause is collecting the data.
Carlos Huerta (to Everyone): 3:47 PM: I believe it is called MiraDx. Your Onc can call her and have the mouth swab sent out. Joanne Weihaas MD. They are checking for a KRAS-variant. Regarding the Keytruda sensitivity test/study?
Len Sierra (to Everyone): 4:20 PM: Findings of a Phase III imaging study, unveiled at the American Heart Association’s annual conference, show that adding Repatha (evolocumab) to statin therapy resulted in statistically significant regression of atherosclerosis in patients with coronary artery disease (CAD), indicating the drug might offer a key advantage over statin therapy.
Len Sierra (to Everyone): 4:45 PM: Published online 2016 May 6. doi: 10.3389/fonc.2016.00114 PMCID: PMC4858516 PMID: 27200300 Intensity-Modulated Radiation Therapy with Stereotactic Body Radiation Therapy Boost for Unfavorable Prostate Cancer: The Georgetown University Experience
Pat Martin (to Everyone): 4:49 PM: See you all next Monday
John Ivory (to Everyone): 4:57 PM: One other way to ask the question–instead of asking if you’re getting sbrt, why not say, “I talked to someone who got sbrt and it only took 5 sessions. Can you tell me why it will take me so many more?”
Len Sierra (to Everyone): 4:58 PM: Good suggestion, John!
Herb Geller (to Organizer(s) Only): 5:07 PM: I gotta go, sorry. I’m in the hot seat next week.
Jake (to Everyone): 5:07 PM: Night,
Herb kang (to Everyone): 5:07 PM: take courage to try
Herb Geller (to Everyone): 5:08 PM: I gotta go. See you next week.
Julian Morales (to Everyone): 5:10 PM: Gotta go too – see you next week. thanks!
Bruce Bocian (to Everyone): 5:11 PM: Ill be seeing Smulewitz this month! I see Vandeerweele tomorrow
Len Sierra (to Everyone): 5:13 PM: Dropping off, guys. See you next week!
Don Price Boulder colorado (to Everyone): 5:16 PM: see all next time…dinner time here.
Jake (to Everyone): 5:23 PM: Thanks Peter!
Gary Peters (to Everyone): 5:24 PM: Dropping off guys. Have a good week
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 July 28th, we had the pleasure of having Michael Bihovsky!
Michael shared his award-winning film and musical theater works, ranging from Les Mis parodies to full musicals about neuroplasticity to his brand new music video, Paperweight, which documents the COVID-19 pandemic experience through the lens of disability. Through this wide range of creations, Michael demonstrated how he has created music and art whose poignancy (and comedy) shines through not merely despite his struggles with the connective tissue disorder Ehlers-Danlos Syndrome, but because of those struggles.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
On Aug 4th, Dr. Martin Tenniswood(Chief Scientific Officer – miR Scientific) spoke at our Active Surveillance Virtual Support Group with a special presentation titled “The Future of Liquid Biopsies in Active Surveillance”
Dr. Tenniswood is the co-founder of miR Scientific, which is developing a new liquid biopsy known as Sentinel. He has been searching for the “Holy Grail,” a liquid biopsy for prostate cancer, throughout his 40-year career. He spoke about his search and research in this arena.
We want to thank Dr. Tenniswood for answering questions!
To view the slides from this presentation, click here.
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.
