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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.
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Editor’s Pick:Prednisone may just be a side drug to abiraterone acetate but hear what happens when your medical team fails to mention weaning off it when you stop abi – it’s BAD!! And we run cross two cases where an RO might just be thinking more about billings than patient welfare.(rd)
Topics Discussed
older gent never advised to wean off pred & lost 60# – next?; treating the primary (prostate gland); Lu177 PSMA trials; participant reports on Ac225+pembro+ enz trial; CTC explanation; Botox for bladder spasms; Pylarify used to check ‘discordant’ lesions; Antonarakis on the move; cyclophos’ stops being effective; finding Pylarify (see above); PSA moving up; ibuprofen vs tamsulosin (Flomax) for post RT frequency/urgency; RO’s, deep pockets & integrty – caveat emptor!
Chat Log
Jake (to Everyone): 5:13 PM: Welcome all!
Ted Healy- Portland, OR. (to Everyone): 5:25 PM: Have to go folks. Thank you!
Pat Martin (to Everyone): 5:25 PM: Somatic testing?
carl forman (Private): 5:32 PM: FYI. I have a film crew coming to my home this Wednesday for the video project on men living with advanced prostate cancer, that you had referred me to. Thanks.
Stan Friedman (to Everyone): 6:07 PM: Dr. Borys Mychalczak. He is the chief, radiation oncology at MSK Westchester & MSK Bergen
Rick Davis (to Organizer(s) Only): 6:23 PM: Prof Bill had this Tx!
Joel Blanchette, Reston, VA (to Everyone): 6:42 PM: (From Dr. Antonarakis) I have left Johns Hopkins, and I am not able to provide any professional advice at the moment (sorry). Please make an appointment to see Dr Sam Denmeade, so that you remain connected with a medical oncologist at Johns Hopkins. I have no idea how anything will work at the University of Minnesota, nor what needs to be done to transfer records. It may be a while before I am able to see patients there, because I am not fully credentialled in the state of MN and I don’t know how long that will take. Thanks for your patience, and please connect with Dr Denmeade in the meantime.
Rick Davis (to Everyone): 6:46 PM: Sorry Gents – just got knocked off. We are having a big monsoon.
Mark Perloe – Atlanta (to Everyone): 7:00 PM: Good evening. Have to run.
Alan Moskowitz (to Everyone): 7:02 PM: Time to leave . Goodnight all.
Bob Smith (to Everyone): 7:07 PM: My onclolgist has ordered a CT and bone scan in October. As of 3 months ago, a bone scan showed 5 suspected bone mets and one almost certain bone met. If the next ct/bone scan series shows lots of mets, would a PSMA ga 68 likely give me any additional actionable information? Or, should I go for the PSMA ga 68 test instead of the ct/bone scan series. I am a VET so I could fly from HI to West LA for another PSMA ga 68.
Herb Geller (to Everyone): 7:09 PM: I would think that a PSMA PET scan would be in order. It will give more information
Len Sierra (to Everyone): 7:09 PM: I agree with Herb on the PSMA PET.
Joe Gallo (to Everyone): 7:11 PM: Bob. VA at WLA PSMA PET is using Pyl and is available at no cost to Vets. It is significantly more detailed than a Bone or CT scan. I can give you contact info if you want.
Bob Smith (to Everyone): 7:12 PM: Thanks everyone. Joe, I have the contact info. Julian Morales (to Everyone): 7:21 PM: Thanks for the great discussion! See you next week.
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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
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.
‘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: The importance of having a strong GU med onc to quarterback your treatment is revealed when a man finds himself shunted from trial to trial. rd)
Topics Discussed
Dealing with another recurrence after 20 yrs – can you radiate ribs?; adding back a 2nd lin AR after brief holiday; salvage RT working; low PSA shows no PSMA result; HDR procedure; coming up; choosing the right 2nd line anti-androgen; back door Nubequa via Technetium 99 scan; find strong GU med onc to QB your treatment to prevent succession of trials; debulk primary?; one too many opinions???
Chat Log
Herb Geller (to Everyone): 5:19 PM: Dr. Chadha is Hem/Onc with some interests in GU, but not a GU specialist
Larry Fish (to Everyone): 5:22 PM: ? if psma shows spread to bone – why plan to radiate lymph again – before results of ADT are in, etc.
Herb Geller (to Everyone): 5:29 PM: If It were me, I’d go to Dr. Jinsong Zhang at Moffett. He is trained in GU with good credetials.
Rick Davis (to Everyone): 5:30 PM: We know men who have seen Chahoud and are happy with him
Bill Franklin (to Everyone): 5:31 PM: I know two individuals who have gone to Dr. Julio Pow-Sang at Moffitt. Also GU with good credentials.
Rick Davis (to Everyone): 5:33 PM: Pow Sang is a urologist
Bill Franklin (to Everyone): 5:35 PM: Pow Sang is Department Chair of the Genitourinary Oncology Program at Moffitt. I know him from that aspect and assumed he was a GU.
Len Sierra (to Everyone): 5:53 PM: Jimmy G, Carl said he will pay you in grapefruit currency!
Jim Greenfield (to Everyone): 5:55 PM: Ok but the inlfation is murdurous these days
Alan Moskowitz (to Everyone): 5:58 PM: Have to leave now. take care everyone.
Ted Healy (to Everyone): 6:21 PM: Anyone visiting Portland, please do touch base with me at phoenix4357@gmail.com . Absolutely!
Bruce Bocian (to Everyone): 6:30 PM: None at all, .20, .18, .24, .27 . Have to run, thanks for doing all you do!
Joe (to Everyone): 6:47 PM: Gents, great to see y’all again. Gotta run. Thanks all. Joe
James Schraidt (to Everyone): 7:06 PM: Gotta go. Best to all.
Bill Franklin (to Everyone): 7:13 PM: I’m up very early tomorrow morning so I’ve got to go. Take care all.
Len Sierra (to Everyone): 7:14 PM: Also must close out, guys. See y’all next week!
Joe Gallo (to Everyone): 7:16 PM: Me too. My appointment is a 715am. Good call.
Dennis McGuire (to Everyone): 7:19 PM: where did Antonarakis go ?
Jake (to Everyone): 7:20 PM: University of Minnesota, 1 September
Herb Geller (to Everyone): 7:21 PM: The NIH trial that Brian is talking about combines taxol with two anti-immune antibodies.
David Plunkett, KCMO (to Everyone): 7:24 PM: I’ll try again next week.
