Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 7, 2021
Editor’s Pick: Wow – over 50 in the Room this week, so lots of great stuff!!! From conventional vs unconventional ways to treat advanced PCa to multiple testimonies on how exercise combats fatigue; and, LHRH & heart risk – you decide! (rd)
Topics Discussed
ASCO ’21 Quick Highlights; Centers of Excellence vs independent GU Med Oncs; LHRH comparisons; compassionate use for Lu177 PSMA; combatting fatigue w. exercise; itching and rash site reaction to Lupron; enzalutamide vs apalutamide; predinisone use when diabetic; how long can you stay at your PSA nadir?; mistaken testosterone reading gets a laugh; lipid panel considerations; more & more chemo … & still more!; LHRH & heart risk again today; health anxiety raises its ugly head.
Chat Log
AnCan – rick (to Organizer(s) Only): 5:32 PM: 47 online + callers – I think that’s a record!
Jake Hannam (to Organizer(s) Only): 5:33 PM: I think so too
Len Sierra (to Organizer(s) Only): 5:33 PM: Yes! Amazing! Btw, now you can see why I could never regurgitate Howard’s incredibly strange and complex journey!
richard wassersug (to Everyone): 5:46 PM: Rick, You are right!
Bill Franklin (to Organizer(s) Only): 5:48 PM: This might be the biggest group I’ve seen yet. I still had a little a day or two after the treatment. I was good for a long time but then, unfortunately it came back. I’ve actually been having a lot of issues lately. Hopefully you’ll get to feeling better soon.
Mark Perloe (to Everyone): 5:55 PM: https://clinicaltrials.gov/ct2/show/NCT00859781?term=LU+177&cond=prostate+cancer&cntry=US&state=US%3ACA&city=Los+Angeles&dist=50&draw=2&rank=3
Pat Martin (to Everyone): 5:59 PM: Resistance training also builds BONES. Absolutely necessary while on ADT
Joel Blanchette – Reston, VA (to Everyone): 5:59 PM: We are at 50 in the room.
Mark Perloe (to Everyone): 6:02 PM: If you are on a statin, Co Q10 can reduce muscle issues.
AnCan – rick (to Jimmy Greenfield): 6:29 PM: What did we do for you today,
Jimmy G Jimmy Greenfield (Private): 6:30 PM: Just being yourselves, fantastic.
Paul Freda (to Everyone): 6:46 PM: I have the belly problem too. It is very frustrating and I have not been able to get rid of it. ….. I do feel better about it when resistance training exercsing at the fitness center.
Jimmy Greenfield (to Everyone): 6:48 PM: I’m with you Paul. Better to be strong-fat!
Bill Franklin (to Everyone): 6:51 PM: I did just shy of 2 years on lupron and never experienced any type of itching, rash, or hives after my shots.
Jeff Marchi (to Everyone): 6:53 PM: 4 years and I have no issues, can’t even remember which hip it went in
Pat Martin (to Everyone): 6:53 PM: How big of a percentage of T production is covered by Abi alone?
Herb Geller (to Everyone): 6:56 PM: Theoretically, Abi alone should do the job. But it requires some risk taking to go that route. Abi should block all T production independently of LHRH.
Jake Hannam (to Everyone): 6:59 PM: Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones by Wassersug, et al
Mark Perloe (to Everyone): 7:00 PM: BNP is used in US to monitor CHF, but not in healthy people.
Pat Martin (to Everyone): 7:03 PM: I’ll be getting an Eligard shot and PSA test this Wednesday.
AnCan – rick (to Len Sierra): 7:09 PM: SSRIs are anti-depression; he needs an anti anxiety
Len Sierra (Private): 7:09 PM: They are also anxiolytics, Rick. Anyway, anxiety and depression go hand in hand.
AnCan – rick (to Len Sierra): 7:11 PM: don’t agree with you – I don’t suffer from anxiety
Jimmy Greenfield (Private): 7:11 PM: Yes! Not nervous, I’m just excitable you know. Shingles vaccine shot is killing me!
Len Sierra (Private): 7:12 PM: Because you’re taking an SSRI or SNRI.
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, May 17, 2021
Editor’s Pick: When the standard of care works and has not been tried, should the doc recommend an unproven trial? Also, is it true to say you’ll never come off ADT? (rd)
Topics Discussed
Standard of Care vs Trials; Actinium 225 vs Lu 177 PSMA trials …. personal experiences; are lung nodules really PCa?; Vets PSMA trial; what’s NGS?; shortness of breath and Xgeva; darolutamide/rosuvastatin interaction; using a heart rate monitor to exercise; ADT and metabolic syndrome/ lipid panel; enz/abi switch works; telling cancer pain from inflammation; enzalutamide holiday; is lifetime ADT really the case?; 1.7 PSA allows for Axumin scan; when to do Provenge; brachy+IMRT+HT; neuropathy remedies; RT for recurrence
Chat Log
Paul Freda (Private): 5:30 PM:
Rick How long after beginning a drug like Xtandi should one wait to do a blood test to see if it is working ?
rick – ancan (to Paul Freda): 5:32 PM: 30 days
Paul Freda (Private): 5:32 PM: OK thanks
rick – ancan (to Everyone): 5:51 PM: Homogeneity of Mx PCa …. https://www.fredhutch.org/en/news/center-news/2016/02/metastatic-prostate-cancer-and-precision-oncology.html
rick – ancan (to Everyone): 5:51 PM: http://www.eurekalert.org/pub_releases/2016-02/fhcr-poc022516.php
rick – ancan (to Everyone): 5:57 PM: joeg@ancan.org
Bruce Bocian (to Everyone): 5:58 PM: My son is a Major in the Corps!
sylvester mann (to Everyone): 6:05 PM: Thanks to everyone but I must leave. Best regards.
Joel Blanchette – Reston, VA (to Everyone): 6:06 PM: Contact: Alex Alas 310-478-3711 ext 41399 Alexander.Alas@va.gov West LA VA Hospital Contact.
rick – ancan (to Everyone): 6:06 PM: Tx Joel!
Bruce Bocian (to Everyone): 6:11 PM: My bike is in a cycle-ops, works b
rick – ancan (to Everyone): 7:03 PM: gabapentin/Neurontin
rick – ancan (to Everyone): 7:04 PM: Lyrica/pregabalin
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 11, 2021
Editor’s Pick:Great discussions this week – trials vs chemo, absurdly high T on LHRH + abi, sweet smelling urine – but the prize goes to Being Your Own Best Advocate … someone’s listeing to us!(rd)
Topics Discussed
Another trial or finally try the the SoC – chemo?; cyclophosphamide; PSA doubling times; post-AUS surgery – and more incontinence issues; testosterone returns; Dr. Morgans on the move … and Dr. Antonarakis!; brachy+IMGT+HT is the gold standard; abiraterone and liver effects suggests switch to darolutamide and DUDE program; hormone therapy prematurely ages us; when it comes to Axumin and MSKCC, Be Your Own Best Advocate; what’s that sweet urine smell – pre-diabetes?; neuropathy; Frank finishes chemo; Testosterone supplementation; T of 750ng/ml on ADT + abi?? – sure that’s your sample?
Chat Log
Jerry Pelfrey (to Organizer(s) Only): 3:06 PM: Rick what is the name of AnCan on facebook? I have looked and can not find it anywhere.
Herb Geller (to Everyone): 3:30 PM: Doubling time is the time it takes for PSA level to double. So if it goes from 8 to 16 in one month, then doubling time is a month.
Ravi (to Organizer(s) Only): 3:48 PM: so if T varies so much, what is the best time to test?
AnCan Barniskis Room (to Organizer(s) Only): 3:49 PM: not sure Ravi …… but maybe best to test always at the same time???
Herb Geller (to Everyone): 3:59 PM: Van Veldhuizen at Rochester
AnCan Barniskis Room (to Peter Kafka): 4:08 PM: switch out of abi to enz
Joe Murgia (to Everyone): 4:45 PM: After about 18 months on bicalutamide my A1c went up to 7.8. I’ve been on metformin to control my blood sugar for almost 3 months and I’ll be getting an A1c in 2 weeks. My AM fasting blood sugars have improved. Any help it may give in fighting the PCa would be welcome.
Ravi (to Organizer(s) Only): 4:46 PM: Thanks, Joe
Joe Gallo (to Everyone): 4:47 PM: Get the basic Lipid (panel current levels)as well as A1C (3 months average). Both are valuable.
AnCan Barniskis Room (to Everyone): 4:47 PM: From Ravi …. Thanks, Joe
John Ivory (to Everyone): 4:57 PM: I’ve got to run to another Zoom. Good to see everyone! Aloha, Peter!
Jeff Marchi (to Everyone): 4:59 PM: took biclutamide for a year but A1C nverwent above 5. I keep weight down, weigh daily. I almost never eat sugar, and am very careful with carbohydrates, that really helped. last test was 5.3. have to really monitor diet. never above 5.6
Pat Martin (to Everyone): 5:02 PM: I appreciate this group…300 years of experience and still has a sense of humor.
Herb Geller (to Everyone): 5:07 PM: I gotta go, guys. Dinner’s on the table. Sorry.
