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…”
Well, we’ve been talking about this for many months and now it’s history — PyL PSMA-PET scanning is now FDA approved for two types of prostate cancer patients, i.e., those with newly diagnosed high-risk disease who are suspect for metastasis; and those patients with recurrent disease that have a rising PSA after primary therapy has failed. So this includes most of the men in AnCan’s High Risk/Recurrent/Advanced group which meets every week on alternating Mondays and Tuesdays.
Unlike the previous 68Ga-PSMA-11 scan approved in December of 2020, the PyL scan has a longer shelf life and therefore it can be commercially produced and shipped to any medical facility that is capable of performing PET imaging. One caveat, however, is that it may take Medicare several months before they will approve reimbursement for this scan.
The actual drug approved by the FDA is Pylarify made by Lantheus Holdings. It carries the radionuclide to the prostate cell so it can be seen and scanned.
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 03, 2021
Editor’s Pick: An 80 yr old man tolerating docetaxel is an inspiration to all. Later on, practically ,do you stop treatment to allow PSA rise for screening purposes? (rd)
Topics Discussed
80+ yr old man undergoes chemo, but rash stops it; reluctant patient faces recurrence; Grade 4 Radiation Cystitis; more recurrence w. pelvic girdle RT; NGS reveals MSI-H; getting an Axumin scan thru MSKCC; In Memory of Scott Hogan; ARV110 trial fails BRCA2 patient; swollen legs leads to coming off abi; melanoma Dx to add to PCa; continuing Tx vs allowing PSA rise to see source of recurrence; bowel and bladder maintenance during salvage RT
Chat Log \
John Ivory (Private): 5:22 PM: https://www.dignityhealth.org/ourdoctors/1699772210-russell-gollard
Carlos Huerta (to Everyone): 5:25 PM: Extravasation is when a medication gets out of the vein and under your skin.
Jake Hannam (to Everyone): 5:26 PM: Extravasation is the leakage of a fluid out of its container into the surrounding area, especially blood or blood cells from vessels. In the case of inflammation, it refers to the movement of white blood cells from the capillaries to the tissues surrounding them (leukocyte extravasation, also known as diapedesis). Extravasation injury is defined as the damage caused by the efflux of solutions from a vessel into surrounding tissue spaces during intravenous infusion. The damage can extend to involve nerves, tendons, and joints and can continue for months after the initial insult.
Bruce Bocian (to Everyone): 5:37 PM: Try lavender oil
Eileen Murphy (to Everyone): 5:37 PM: How about Sarna lotion with menthol or Aveeno products?
Bruce Bocian (to Everyone): 5:38 PM: I got the lavender oil tip from the essential oil book
Bob McHugh (to Everyone): 5:57 PM: A shrink or social worker for this guy?
Herb Geller (to Organizer(s) Only): 6:03 PM: I just searched his hospital and there are no GU oncologists
William Franklin (to Everyone): 6:27 PM: I don’t want to take up time we can use to talk to you guys so I’ll put my plug in here. If you feel like ANCAN has helped you and you’d like to say something nice about us, please hop over to greatnonprofits.org, search for ANCAN, and make a comment. We would greatly appreciate it.
Rick Davis (to Everyone): 6:31 PM: You can go ot our website and just click on Testimonials too
Bruce Bocian (to Everyone): 6:42 PM: Bill, just posted my review!
Frank Fabish (to Everyone): 7:15 PM: need to sign off. Thank you all.
Carlos Huerta (to Everyone): 7:17 PM: Dont forget the old standard. Castor Oil.
Joe Gallo (to Everyone): 7:20 PM: Senakot is brand of Sena
