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, Apr 13, 2021
Editor’s Choice : We learn about a partial removal of the prostate for urinary reason – a simple prostatectomy; and how this can complicate identifying whether PCa has spread. (rd)
Topics Discussed
Hawaii KP patient needs better follow-up on recurrence; a partial removal of the prostate confuses what’s going on; 80 yr man wonders how to handle recurrence; Lu177 PSMA trial experience; & … I130 PSMA trial experience together with jaw issues; cyclophosphamide oral chemo; the AUS works!! (artificial urinary sphincter); PSA still rising on ARV110 trial; experience with return of testosterone; follow-up after 4+5 RP with a positive node.
Chat Log
Rick Davis (to Everyone): 3:03 PM: OMG …… Don Price – the Mouse returns!! Bob Bordiga also coming out the woodwork
Don Price (to Everyone): 3:06 PM: Si…sorry to have been away so long.
John Ivory (to Everyone): 3:45 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/anish-b-parikh Pat Martin (to Everyone): 3:46 PM: Any biopsies?
Jake Hannam (to Everyone): 3:51 PM: thanks john
Pat Martin (to Everyone): 3:53 PM: What Gleason score?
John Ivory (to Everyone): 3:53 PM: he said 4+4
Pat Martin (to Everyone): 3:54 PM: Thanks. I missed that
W Klass Toronto (to Everyone): 3:56 PM: Need to leave. Thanks for the invite.
Pat Martin (to Everyone): 3:57 PM: I was looking forward to hearing from you.
Jake Hannam (to Everyone): 3:57 PM: thanks for joining us. Come back soon!
Herb Geller (to Organizer(s) Only): 4:03 PM: I just got an e-mail from Collins at Gt saying my PSA yesterday was 1.4, and that was after I did stationary bicycle. The previous GT number was 1.8!
Pat Martin (to Everyone): 4:08 PM: heading out. See all next week.
John Ivory (to Everyone): 4:16 PM: I’ve go to run to another meeting. Good to see everyone!
Russ (to Everyone): 4:25 PM: Heading out as well. Have a good night!
Bob (to Everyone): 4:30 PM: Is an axumin scan the same as a PSMA PET with Galium 68?
Jake Hannam (to Everyone): 4:30 PM: oral chemotherapy drug called cyclophosphamide (Cytoxan)
Herb Geller (to Organizer(s) Only): 4:30 PM: No, it uses a different tracer from PSMA. Axumin uses a different tracer
Len Sierra (to Everyone): 4:31 PM: Bob, no, PSMA-PET is more sensitive than Axumin
Rick Davis (to Everyone): 4:36 PM: cyclophosphamide https://pubmed.ncbi.nlm.nih.gov/31399784/
Bob (to Everyone): 4:40 PM: Does anyone have experience with BiPolar ADT? If so, did it work?
Rick Davis (to Everyone): 4:41 PM: Bob – we have a webinar on BAT … search for Denmeade on our website https://ancan.org
Rick Davis (to Everyone): 4:42 PM: Anecdotally we only see short term results from BAT, but JH is reporting better results. Some of our guys have had more conversations with JH. This is a longer discussion than the chat window.
Bob (to Everyone): 4:43 PM: Thank you everyone. I have to leave due to a 1:45appointment which was previously scheduled.
Jake Hannam (to Everyone): 4:44 PM: ARV-110
Jeff Marchi (Private): 4:48 PM: you asked whether Santa Clara is where the medoc is located. when I had my prostate removed I had to drive from San Francisco to San Jose. that is where the surgeons are located. must be where medoc is located
Rick Davis (to Jeff Marchi): 4:50 PM: No he’s mid-Peninsula
Herb Geller (to Everyone): 5:16 PM: I gotta go. See you on Monday
Len Sierra (to Everyone): 5:23 PM: Goodnight, fellas. See you next week.
At AnCan, we love our veterans of any branch, and we sincerely thank you for your service. Our AnCan “Vet-In-Chief” Marine Captain Joe Gallo recently learnt about a clinical trial at the West Los Angeles VA that offers 18F-DCFPyl PSMA scanning for any Vet whatever their diagnosis. Mike Crosby, CEO of Veterans Prostate Cancer Awareness together with ZERO are working to find transportation subsidies. It is open and available to any veteran at no cost!
What is PSMA-PET imaging? It has emerged as a new frontier in prostate cancer diagnosis and treatment.
The key advantage to PSMA-PET imaging is the fact that it’s a lot more sensitive than standard imaging. It picks up lymph nodes, visceral metastases, bone metastases, and does it at a very low PSA level
PSMA is a membrane-bound protein that’s highly expressed in 90% of prostate cancer.
This is the first anniversary of a second study. Close to 200 Veterans have been enrolled and benefitted from PSMA imaging at West Los Angeles VA medical center. The first study also enrolled over 160 subjects with newly diagnosed prostate cancer from all around the country.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 5, 2021
Editor’s PickShould docs make overall survival predictions – it scares a newly diagnosed man, while an old hand laughs! (rd)
Topics Discussed
High-risk PCa treatment decision; recurrence – beware of overall survival preductions; durable remission and NED; experiencing spinal collapse; Spot Radiation; scanning for recurrence; ARV110 trial experience; can you add a drug to your trial; lymphedema issues; CBC questions; picking up rib lesions; 5 yrs out when the doc didn’t give you 5; record your medical meetings; estrogen patch for hot flashes; more chemo …. & more & more; gabapentin for neuropathy; PBRT vs IMRT; going off ADT to get a scan result; …. & lots of nutrition discussed in the Chat Log!
Chat Log
Jeremy (to Everyone): 5:21 PM: https://www.fda.gov/news-events/press-announcements/fda-approves-first-psma-targeted-pet-imaging-drug-men-prostate-cancer
Ken (to Everyone): 5:24 PM: hey jake…. chemo #15 this past friday so dealing with the side effects. alk phos continued down 10 points and psa down 2
Ted Healy (to Everyone): 5:46 PM: record your meetings
Jake Hannam (to Everyone): 5:47 PM: Yes we do, Ted (this and several others)
Ted Healy (to Everyone): 5:48 PM: no, meetings with the dr
John I (to Everyone): 5:52 PM: Wow, Sylvester, that was inspirational!!!
Len Sierra (to Everyone): 5:53 PM: I agree with John – we need to hear more from Sylvester on these calls!
Jake Hannam (to Everyone): 6:26 PM: Radium 223 negates future use of lutetium?
Jake Hannam (to Everyone): 6:27 PM: Is that true?
Herb Geller (to Everyone): 6:36 PM: I don’t know Ra-223 negates anything but it doesn’t seem that promising compared to other therapies.
Rick Davis (to Everyone): 6:38 PM: radionuclide trials usually prevent particpation if you have already taken a radionuclide. check the Lu177 trials
Carl Forman (to Everyone): 6:52 PM: Thanks so much to Scott Hogan for being able to participate here tonight. Hope to see you here again. Best wishes.
Ted Healy (to Everyone): 7:06 PM: I’m sorry, have to go. thank you all!
Vanita Gaglani (to Everyone): 7:10 PM: walnuts, greens,soaked fenugreek seeds ( 1 tsp per day) real licorice roots, sunflower seeds, spearmint tea all help with hot flashes. Len Fenugreek seeds can be bought in any Indian grocery store.If you have an Indian grocery store near you they have the greens called Methi. Some of the anti carcinogenic ,anti inflammatory natural products include Turmeric, cummin seeds, cinnamon.
eric (to Everyone): 7:16 PM: is this for anti inflammatory
Carlos Huerta (to Everyone): 7:19 PM: Alpha Lipoic Acid
Vanita Gaglani (to Everyone): 7:19 PM: yes. But get real turmeric powder , not capsules.1/4 tsp each you can put all in mik and drink or in tea, warm water. I am happy to answer any questions. hello@vanitasrehab.com. These are natural anti inflammatories.
Rick Davis (to Everyone): 7:22 PM: IMRT vs PBRT side effects http://prostatecancerinfolink.net/2012/02/01/first-directly-comparative-data-question-safety-of-pbrt-vs-imrt/
Carlos Huerta (to Everyone): 7:23 PM: Get a PSMA PET to target the protons
Vanita Gaglani (to Everyone): 7:24 PM: For all treatments try to keep the bladder filled 8-10 oz of urine.
Rick Davis (to Everyone): 7:24 PM: Not necessarily true Vanita – as we heard earlier
Vanita Gaglani (to Everyone): 7:24 PM: we do not need 32 oz of fluid because most men cannot hold it.or women.
John I (to Everyone): 7:26 PM: I needed a full bladder, but I believe it was 24 ounces (though I’m small)
Vanita Gaglani (to Everyone): 7:28 PM: 24 oz is difficult to hold
John I (to Everyone): 7:29 PM: They timed it–drank it 20 min before treatment & tretament was quick.It was hard to hold only if the machine went down & I had to wait a few extra minutes
Vanita Gaglani (to Everyone): 7:30 PM: if anyone can tolerate plain yoghurt eating that helps a lot too Agreed John.
Bruce Bocian (to Everyone): 7:39 PM: please type those letters of that stanford test in the chat box, not sure I heard it correct
Rick Davis (to Everyone): 7:40 PM: 17F DCFPyl
Peter Kafka (to Everyone): 7:40 PM: 17F DCF-PYL PSMA PET CT
John I (to Everyone): 7:42 PM: Great session, thanks Rick
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Mar 23, 2021
Editor’s Pick: Cicadas … no just kiddin’! Nothing outstanding this week unless your intrigued by botox use for bladder urgency. (rd)
Topics Discussed
Bladder issues long after PCa Tx; rectal metastasis; Orgovyx in action; what next – Provenge, enz, daro?; Cicadas … don’t ask!; supplements – bromohexene and phenylisithiocyanate … don’t ask again!!; livr issues from hormone therapy;low dose abi w. food; we question 4 mo HT for 4+4 recurrence; blood count discussion; exercise, exercise, exercise.
Chat Log
….. Apologies but the Chat file did not save on my laptop this week – perhaps because I joined via the Web rather than my desktop. Will know for future!
