Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 1, 2021
Editor’s Pick: More than once we discussed the reality that recurrent prostate cancer is often a chronic and manageable disease. THAT’S A TAKE HOME MESSAAGE!!!! (rd)
Topics Discussed
When’s the right time to pursue follow-up Tx post-RP; recurrence after LDR+IMRT+HT; managing PCa as a chronic disease; radiation field for salvage RT; SpaceOAR hydrogel for RT rectal protection; Lu177 PSMA success; pushing recalcitrant doc finallly reveals metastatic recurrence; proactively seeking site of recurrence
Chat Log
John Ivory (to Everyone): 3:01 PM: Mute-iner on the Bounty
Mark Perloe (to Everyone): 3:20 PM: Does anyone have knowledge on who runs the PTEN mutation test? Is this genomic on tissue and liquid biopsy or genetic?
Joel Blanchette – Reston, VA (to Everyone): 3:21 PM: Mine was dectected by the turmor test done by Foundation Medicine.
James Barnes (to Everyone): 3:22 PM: My genomic testing was also sent to Foundation Medicine.
Mark Perloe (to Everyone): 3:23 PM: Thanks Joel. Was it on the tumor or blood
Joel Blanchette – Reston, VA (to Everyone): 3:24 PM: On the tumor that came from my biopsy tissue. 50 % of men have PTEN.
Mark Perloe (to Everyone): 3:31 PM: That is why I’m interested in checking. It appears to play a role in bypassing testosterone, ie activating the receptor function. In culture mouse prostate cancer rapamycin and metformin may help stop its growth if PTEN is present. Studies in human have been inconclusive.
Ken (to Everyone): 3:33 PM: the combo of metformin and rapamycin has been looked and no one can find much info..
Mark Perloe (to Everyone): 3:34 PM: Yes, those trials are not very helpful. Is there a benefit to knowing PTEN status? If so, when.
Ken (to Everyone): 3:34 PM: for me G360 liquid biospy order by Paul Corn three months ago.
Joel Blanchette – Reston, VA (to Everyone): 3:34 PM: There is a clinical trial that has a drug replacing the PTEN loss. It is call something like apatinib
Herb Geller (to Everyone): 3:44 PM: Mark, Yes there is a benefit from knowing PTEN status, as there are potential downstream signals that get activated if PTEN is missing. A clinical trial with blocking Akt with PTEN loss:Ipatasertib Plus Abiraterone Plus Prednisone/Prednisolone, Relative to Placebo Plus Abiraterone Plus Prednisone/Prednisolone in Adult Male Patients With Metastatic Castrate-Resistant Prostate Cancer (IPATential150)
Herb Geller (to Everyone): 3:52 PM: I have to leave to teach a class
Jake Hannam (to Everyone): 3:53 PM: hoist that mainsail!
Pat Martin (to Everyone): 4:00 PM: I tried to get my M/O to tell me what treatment I would be having in 5 years…. Stumped him and while he was scratching his head, I offered ‘that will be the future, so hard to say was available. He agreed.
Blee (to Everyone): 4:07 PM: Thanks all, until next time… Blee
Jake Hannam (to Everyone): 4:08 PM: Just don’t ask yourself to repeat what you just said
John Ivory (to Everyone): 4:19 PM: I had a water “balloon” inserted every day that I had radiation
Ted Healy (to Everyone): 4:22 PM: this had a good overview on the gel IMHO https://zerocancer.org/learn/resources/webinars-videos/
Jake Hannam (to Everyone): 4:33 PM: The clivus (Latin for “slope”) is a bony part of the cranium at the skull base, a shallow depression behind the dorsum sellæ that slopes obliquely backward. It forms a gradual sloping process at the anterior most portion of the basilar occipital bone at its junction with the sphenoid bone.
Mark Perloe (to Everyone): 4:39 PM: Would he be a candidate for LU 177?
Ancan -rick (to Everyone): 4:40 PM: too early
Mark Perloe (to Everyone): 4:40 PM: With 5 lesions, treating oligomets with SBRT seems controversial. Studies have shown abiraterone is a better first match than Xtandi first.
Carlos Huerta (to Everyone): 4:46 PM: Has Xofigo been discussed?
Joel Blanchette listed a lengthy table showing PSA varying between 0.8 and 1.7 between 2/20 – 5/21 with a couple of aberrations.
Joel Blanchette – Reston, VA (to Everyone): Dr. Antonarakis: “I am not convinced that your PSA level is rising; it seems pretty stable to me. In my opinion, it is too early to get a CT scan or Bone scan. Also, I would not travel to California for PSMA-PET scan, because I anticipate that this will be available soon on the East Coast by June/July this summer. My advice would be to remain patient, and to get a PSMA-PET scan locally (or at Johns Hopkins) as soon as it becomes routinely available. We are all eagerly awaiting the FDA’s decision on DCFPyL this Friday…”
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 25, 2021
PLEASE NOTE: June metings are NOT on our regualr schedule due to the calendar quirk of 5 Tuesdays. June Schedule will be:
Tue, June 1 @ 6 pm Eastern – Peter K
Mon, June 7 @ 8 pm Eastern – rd
Tue, June 15 @ 6 pm Eastern – Len
Mon, June 21 @ 8 pm Eastern – Herb
Editor’s Pick: Gent sees PSA progression and control – but no other signs of disease; and new trial offers two radionuclides concurrently – but beware of heavy side effects. (rd)
Topics Discussed
BAT and radionuclide trials; PSMA PET scans in W. Los Angeles; disese progression but no physical signs; darolutamide; is searing pain from abi?; HDR+IMRT+HT; double radionuclide trial considered despite side effects; sweet smelling urine – keto bodies?; why not biopsy lymphs on Dx; chemo diminishes tumors everywhere
Chat Log
Joe Gallo (to Everyone): 3:23 PM: PTEN?
Ravi (to Everyone): 3:34 PM: I contact the company that makes the Pyl-PSMA. They were very confident of May end. Joe Gallo (to Everyone): 3:40 PM: Anyone interested Vet contact Alexander.Alas@va.gov Research coordinator at the West VA in LA. 310-478-3711 x 41399 or contact me joeg@ancan.org
rick – ancan (to Peter): 4:11 PM: Peter – Ken’s email is ken_anderson@ancan.org 480 540 8926 Joe – joeg@ancan.org 215 499 4001
Joe Gallo (to Everyone): 4:35 PM: Apparently there is an opinion from the ASCENDE RT. In higher risk cancers (unfavorable intermediate risk and high risk), recent results from the ASCENDE RT trial show a benefit in recurrence free survival for high risk prostate cancer patients who undergo brachytherapy (LDR in the case of the study), as a boost after external beam radiation.
Julian Morales (to Everyone): 4:43 PM: Thanks Joe.The Brachy RO want to do HDR but will discuss with IMRT RO to see which is better before or after.
John Ivory (to Everyone): 4:47 PM: Quick public service announcement: Our own Jimmy Greenfield will be performing tomorrow night as part of AnCan’s collaboration with The Marsh theater. He’ll be singing and playing ukulele and will be talking about how the arts have helped him live with his disease. Will take place here: tomorrow at 10:30 ET/9:30 CT/ 7:30 PT here: https://themarsh.org/soloartsheal/
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, Apr 27, 2021
Editor’s Pick:The lengthy discussion about the benefits of introducing a 2nd line anti-androgen therapy is worth a listen! (rd)
Topics Discussed
PSMA scan available at U of Michigan; very small 4+4 daignosis is challenging; starting cyclophosphamide; benefits of a 2nd line anti-androgen; intermittent hormone therapy; clincal trial results vs individual response; 3rd party advice just doesn’t work!; chemo side effects inc. dry eye : repeat NGS sequencing after 18 mo.; 4+5 treatment plan after focal recurrence; Space Oar
Chat Log
Bruce Bocian (to Everyone): 3:43 PM: James Pool, Jr. Clinical Subjects Coordinator, University of Michigan Health System, 1500 E. Medical Center Drive CVC 5583 Box 5868 Ann Arbor, MI 48109 Phone: (734) 615-7391 Fax: (734) 615-1435 Email: jampool@med.umich.edu Pager: 5425
Rick Davis (to Everyone): 3:43 PM: Tx Bruce
Rick Davis (to Everyone): 3:47 PM: joeg@ancan.org Joe Gallo
Rick Davis (to Herb Geller): 4:13 PM: Herb – this is in your wheelhouse. The trial is not ‘epidemiologocal’ per se??
Herb Geller (Private): 4:15 PM: The trials were not epidemiological they were randomized
Rick Davis (to Everyone): 4:18 PM: Here’s the link for Thursday’s Larry Fong webinar on cancer immunotherapy: https://bit.ly/3thuPmq
Pat Martin (to Everyone): 4:23 PM: What kind of Gleason score was he DXed as? Sorry I was a little slow. Story of my life.
Bruce Bocian (to Everyone): 4:26 PM: Bring him on a call with you next time!!!!
Ravi (to Everyone): 4:28 PM: How do you decide you need a medical oncologist in addition to a radiation onco
Bill Franklin (to Organizer(s) Only): 4:28 PM: Anyone on the call who used Hydrogel or the SpaceOAR for radiation?
Herb Geller (to Everyone): 4:29 PM: If you have disease that is systemic, then the appropriate person is a medical oncologist. An RO would be for localized lesions only.
Bruce Bocian (to Everyone): 4:33 PM: Invite him over for a beer
Mike Yorke – Florida (to Everyone): 4:56 PM: https://www.cancercenter.com/treatment-options/radiation-therapy/external-beam-radiation
ALFRED LATIMER (Private): 4:59 PM: Looked it up. Most recent test was Guardant a year ago. positive BRAC2 Ordered by Dr. Scholz. Dr L had that test result and other earlier ones
Rick Davis (to ALFRED LATIMER): 5:10 PM: Tx for info ….. you are doing the right thing
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021
Editor’s Pick:We love GOOD NEWS – so when a ‘young’ man diagnosed denovo metastatic receives a visit from NED (No Evidence of Disease) 9 months after starting treatment , we are thrilled! (rd)
Topics Discussed
why are you waiting on Provenge; more on what to do at 1st recurrence; RP complications impact follow-up treatment; Dr. Efstathiou …. & Dr.Turner; rejected for REGN5678 – you heard it here first!!; young denovo Mx man is NED – yeah!!; Axumin scan; nodules suggest salvage RT; rare GU med onc switch at MSKCC; more lesions suggest chemo rather than spot RT; what to expect from ADT; Eligard, Lupron … or maybe just Coivid19?; how about adding a PARP-I to abi if you’re BRCA+?
Len Sierra (to Everyone): 7:14 PM: Abiraterone acetate with prednisone, 5mg, twice daily or dexamethasone, 0.5mg, once daily met the prespecified threshold for the primary end point. abiraterone acetate with prednisone, 5mg;once daily or 2.5mg twice daily did not meet the threshold Here are the numbers for months of radiographic progression-free survival for each group: Dexamethasone: 26.6 months; Prednisone 5mg twice daily: 18.5 months; Prednisone 5mg once daily: 15.3 months; Prednisone 2.5mg twice: 12.8 mo. Full article on safety and efficacy of glucocorticoid regimens used with Zytiga/abiraterone https://jamanetwork.com/journals/jamaoncology/fullarticle/2737089
Jake Hannam (to Everyone): 7:25 PM: ty len
AnCan – rick (to Everyone): 7:33 PM: Peter Van Veldhuizen – Wilmott Rochester
AnCan – rick (to Everyone): 7:36 PM: https://ancan.org/safety-of-glucocorticoid-regimens-in-combination-with-zytiga-for-mcrpc-patients/ This is Len’s AnCan post
Peter Kafka (to Everyone): 8:09 PM: Jump rope is great
Tracy Saville (to Everyone): 8:09 PM: have a good night everyone. i have to run.
Peter Kafka (to Everyone): 8:11 PM: I agree. Elligard sucks
Frank Fabish (to Everyone): 8:21 PM: See you next week guys.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021
Editor’s Pick:Dr. BJ Miller’s Prognosis Directive may change how you handle your diagnosis and treatment path! (rd)
Topics Discussed
denovo metastatic treatment; comparing liquid vs solid tissue Bx for sequencing; BJ Miller’s Prognosis Declaration; high risk Dx dilemma; how quickly does T return; exercsie training during chemo; ischemic brain image; Lu177 PSMA R2 PROter Trial; symptom management discussion; relugolix; cumulative ADT impact; ADT effective
Chat Log
Jake Hannam (to Everyone): 4:07 PM: nothing for me – FMI liquid biopsy tomorrow
Bob McHugh (to Everyone): 4:09 PM: I have Dr. Oh as well.
Pat Martin (to Everyone): 4:10 PM: Axumin scan scheduled for 03/04. 03/05 Lupron to restart. Still waiting to see if imunotherapy will work for me.
Bob McHugh (to Everyone): 4:18 PM: Been seeing Oh since ’15
Bill Franklin (to Organizer(s) Only): 4:20 PM: I have seen more than 30 on the screen with cameras on.
Jake Hannam (to Organizer(s) Only): 4:20 PM: limit was 25 last week too
Ken A (Private): 4:22 PM: rick i hope you will bring up the bj miller form
AnCan – rick (to Ken A): 4:22 PM: trying to when i get in
John Ivory (to Everyone): 4:25 PM: Thanks for the news re: the liquid biospy, Rick. Here’s the announcement https://bit.ly/3pcyDTa and for the nerds, the ASCO poster https://bit.ly/2Z2W4Dy
John Ivory (to Everyone): 4:44 PM: Elizabeth Kessler https://som.ucdenver.edu/Profiles/Faculty/Profile/21572
Jake Hannam (to Everyone): 4:48 PM: Axumin PET/CT
Pat Martin (to Everyone): 4:50 PM: Another question…How many cores positive?
AnCan – rick (to Everyone): 4:50 PM: Tx Gents
John Ivory (to Everyone): 4:54 PM: I guess I’m Mr. Chat today. Following up on Rick’s mention of whether men want to know their prognosis, he wrote a wonderful article about it here (acknowledging Len as well): https://ancan.org/required-reading-if-you-think-your-condition-is-life-threatening/
AnCan – rick (to Everyone): 4:59 PM: SBRT compared to other RT modes ….. Allen Edel (@tallallen) https://www.prostatecancer.news/2021/01/sbrt-for-high-risk-patients.html
Bob McHugh (to Everyone): 5:04 PM: No one mentioned proton therapy. Is that an option?
AnCan – rick (to Everyone): 5:06 PM: Not really, Bob …… because it will involve the same number of treatments as IMRT.
Bob McHugh (to Everyone): 5:07 PM: It used to be sold as more accurate and therefore less risk of side effects?
AnCan – rick (to Everyone): 5:08 PM: Some better side effects, some worse side effects
Bob McHugh (to Everyone): 5:09 PM: Understood
Jimmy Greenfield (to Everyone): 5:17 PM: Relugolix
Bob McHugh (to Everyone): 5:20 PM: https://www.acsm.org/get-stay-certified/get-certified/specialization/cet
John Ivory (to Everyone): 5:26 PM: Thanks, Bob & Rick. Here’s how to find a certified trainer in your area certifed cancer trainer in your area. https://certification2.acsm.org/profinder
Tracy Saville (to Everyone): 5:26 PM: have to jump a bit early. thanks, guys.
Pat Martin (to Everyone): 5:26 PM: I tried to get in Flu-BLAST study. Too fast of PSADT. But my med/onc is going to use same protocol as SOC.
John Ivory (to Everyone): 5:44 PM: I’m going to be joining an 8-week discussion group for cancer patients called Meaning-Centered Psychotherapy through Northwestern Hospital. I’m not sure when it will start bc they’re still recruiting for it. They said it was free (not sure if it’s because I’m a patient there). Here’s the link: https://bit.ly/3oidjLs
Joe (to Everyone): 5:47 PM: I see a PsychOncologist at UCH and we did the Meaning Centered work based on the ideas of Viktor Frankl. It was and is amazingly helpful for me.
John Ivory (to Everyone): 5:48 PM: Yes, Joe–same source. Thanks.
Joe (to Everyone): 5:49 PM: I think it was started by a fella at Sloan Kettering named Bill Breitbart….called him up and thanked him. My psych was one of his students.
Joe (to Everyone): 5:52 PM: gotta run….great to see veryone and helpful as always
John Ivory (to Everyone): 5:53 PM: Thanks, Joe. Here’s a good overview of Breitbart’s work
Joe Murgia (to Everyone): 5:53 PM: I priced ORGOVYX (relugolix) today on my Medicare Advantage site. It was around $1750.00 for 90 days at my local pharmacy. I was surprised it was that low.
Len Sierra (to Everyone): 5:54 PM: I agree, Joe — that is surprisingly low!
Herb Geller (to Everyone): 5:55 PM: Still not cheap
John Ivory (to Everyone): 5:55 PM: Joe M. I’m guessing that ORGOVYX has a financial benefit of not needing to be administered by a HCP (though that makes it a drug, not a procedure)
John Ivory (to Everyone): 5:57 PM: Funny anecdote–the week when my preapproval was in process for ORGOVYX, I didn’t remember the name of the drug bc I was sure I wouldn’t be approved. That week I did a market research study, and it turned out to be for ORGOVYX! So far I’m up a couple hundred bucks on it.
Joe Murgia (to Everyone): 5:58 PM: I will double check again tomorrow to make sure I did not misread the website pricing. If my Casodex monotherapy stops working, I’ll be considering Orgovyx.
Len Sierra (to Everyone): 6:01 PM: Joe, if you’re doing monotherapy, you’re better off with one of the newer AR blockers, like Xtandi, Erleada or Nubeqa. They have lower incidences of gynecomastia than Casodex.
John Ivory (to Everyone): 6:02 PM: Thank you Peter M. & Jake! I watch those videos sometimes.
Wang Gao Shan (to Everyone): 6:03 PM: Yes… Thank You Peter & Jake
Peter Monaco (to Everyone): 6:04 PM: Glad to help!
Jake Hannam (to Everyone): 6:09 PM: fyi – Peter M. does all the recordings now. I’m just his backup now.
