Editor’s Pick ….. From Down Under, we hear from a Gent diagnosed metastatic at aged 50 who has managed his disease successfully since 2012! AnCan LOVES these anecdotal stories that offer hope (rd)
Topics Discussed
Cancer returns, but is it prostate cancer or lymphoma?; ‘young man’s’ successful treatment of metastatic cancer over 8 years; TMJ and bone support medicines; another man finds he’s BRCA+ & anemic; East Coast PSMA scans; chemo leads to foot & hand rash – or maybe allergy at the infusion site; enz, abi or chemo – which first?; acupuncture solves neuropathy; NIH still shut down for PSMA scans; seeking empirical validation for treating the primary tumor; needle biopsy of inguinal lymph node
Chat Log
AnCan Barniskis Room (to Len Sierra): 5:10 PM: is Jim still on HT??
AnCan Barniskis Room (to Len Sierra): 5:14 PM: They dont need tissue – liquid Bx
Peter Kafka (to Everyone): 5:15 PM: Who is treating Jim
David Muslin (to Everyone): 5:18 PM: Dr. Marc J Chernoff, DO is a doctor primarily located in Meadowbrook, PA, with other offices in Meadowbrook, PA and Willow Grove, PA( and 4 other locations). He has 29 years of experience. His specialties include Internal Medicine, Hematology/Oncology, Medical Oncology.
AnCan Barniskis Room (to Len Sierra): 5:21 PM: Geynisman @ Fox Chase
John I. (to Everyone): 5:22 PM: https://www.foxchase.org/daniel-geynisman
Len Sierra (Private): 5:41 PM: For lymphoma?
Len Sierra (Private): 5:46 PM: that was in response to your suggestion that he should have a liquid biopsy.
Len Sierra (to Everyone): 5:52 PM: Jim Jeffries, Read Mark Scholz book on prostate cancer: “The Key to Prostate Cancer.” Maybe others can suggest other recent good books.
Peter Kafka (to Everyone): 5:54 PM: Jim: Book available on Amazon
AnCan Barniskis Room (to Len Sierra): 5:57 PM: completely missed the whole lymphoma side initially ,,,,,
Rusty (to Everyone): 6:00 PM: Gotta run guys! Have a great night.
Carl Forman (to Everyone): 6:03 PM: Interesting that PSMA scans have been readily available in Australia, but not yet in the US.
AnCan Barniskis Room (to Everyone): 6:04 PM: PSMA on trial in Oz
Jake Hannam (to Organizer(s) Only): 6:29 PM: I do have a question if there is time.
AnCan Barniskis Room (to Everyone): 6:39 PM: University of Indiana PSMA
Mark Perloe (to Everyone): 6:40 PM: Emory and Columbia University have trials now.
Editor’s Pick: 54 yr. old man w. denovo metastatic disease and significant anemia – is it all due to prostate cancer.
Topics Discussed
Denovo metastatic Dx with very significant anemia; 3-7 day break in PARP to see if it alleviates side effects; abdominal hernia; blood clots from PARP; switching to abi to avoid enz side effects; returning from 24 months HT; SPOP mutation – docetaxel resistance; chemo reduces PSA; heartburn/GERD & abi; Axumin & Insurance; glucocortisoid trial; intermittent hormone therapy
Chat Log
Rich J : 3:41 PM: Have a lymph node needle biopsy scheduled for 22 Sept, radiologist choice of location. Was interested in advice on recovery, but, don’t expect anything unusual. Tracy needs the time. No time for me, thanks.
John I. (to Everyone): 3:44 PM: Tracy, this is a good resource for diet & exercise, esp. the guide you sign up for (free) https://www.pcf.org/patient-resources/living-prostate-cancer/
AnCan – Rick (to Rich J): 3:47 PM: Let’s ask other guys about lymph Bx Rich J (Private): 3:47 PM: I have to leave in about 10 minutes to support my local group.
Rich J (Private): 3:49 PM: CT guided needle biopsy, left groin area, middle ansthesia, Brenda has to drive, but I won’t be out. I be fine. 🙂
John I. (to Everyone): 3:51 PM: Tracy, my doc let’s me tape our conversations with my phone in case I miss anything in my notes
Herb Geller (to Everyone): 4:26 PM: https://www.urotoday.com/conference-highlights/asco-2019-annual-meeting/asco-2019-prostate-cancer/113079-asco-2019-suppression-of-testosterone-production-using-abiraterone-acetate-with-or-without-androgen-deprivation-therapy-in-metastatic-castration-resistant-prostate-cancer.html
AnCan – Rick (to Len Sierra): 4:28 PM: David — abi works differently to the androgen blockers. Every man responds differently – hard to know how you would respond.
AnCan – Rick (to David Muslin): 4:28 PM: David — abi works differently to the androgen blockers. Every man responds differently – hard to know how you would respond.
David Muslin (Private): 4:29 PM: Thanks Rick. I’ll give it a try and we’ll find out.
Editor’s Pick: Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!
Topics Discussed
Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?
Chat Log
Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control
Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.
Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?
Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.
Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.
Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT
Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern
Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?
Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend
John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that
AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/
Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?
Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?
Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.
Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?
Editor’s Pick: Tough one this week – a toss up between treatment options for men with recurrent disease …. and finally taking a drug holiday after 3+ years! rd
Topics Discussed
PCRI Virtual Conference 2020; chemo edema disappears overnight; Covid Test; alkaline phosphatase discussed; recurrence treatment options for two of our guys; after 3 years of success – drug holiday!; treating the primary for metastatic men; available PSMA screening trials; starting ADT
Chat Log
AnCan – Rick (to Everyone): 3:08 PM: 877 582 7011 + GtM Support
AnCan – Rick (to Everyone): 3:20 PM: To register for PCRI ….. https://pcri.us7.list-manage.com/track/click?u=e61bab2d681f6500ca8a92f0e&id=ccc38b0e20&e=27da33585f
AnCan – Rick (to Everyone): 3:39 PM: Dennis M’s trial – https://www.clinicaltrials.gov/ct2/show/NCT03437941
AnCan – Rick (to Everyone): 4:05 PM: NGS new rules ….. https://ancan.org/much-excellent-news-from-foundation-medicine/
Len Sierra (to Everyone): 4:14 PM: Trial at Carbone Center: PSMA-based 18F-DCFPyL PET/CT and PET/MRI Pilot Studies in Prostate Cancer Brief Summary: The overall goal of this research is to validate and develop a non-invasive imaging biomarker of prostate cancer detection, progression, and recurrence. Development of such a biomarker may be useful to differentiate indolent from aggressive prostate cancer phenotypes allowing for selection of an appropriate risk adaptive therapy. Principal Investigator: Steven Cho Sex(es): Male Age: 18 Years and over
Rich J (to Everyone): 4:17 PM: Imaging Study to Investigate Safety and Diagnostic Performance of rhPSMA 7.3 (18F) PET Ligand in Suspected Prostate Cancer Recurrence (SPOTLIGHT)
Jeremy (to Everyone): 4:58 PM: UCLA has increased their price to $3K /Users/jeremylew/Desktop/Screen Shot 2020-09-01 at 4.57.31 PM.png
Ken A (to Everyone): 4:59 PM: thanks Jeremy….
Ken A (to Everyone): 4:59 PM: looking at the trial UCLA has….
Jeremy (to Everyone): 4:59 PM: Tried to show the screenshot, but it didn’t post. BUt the price they gave me last week was $2977
Editor’s Pick: Other than our discussion about therapeutic benefits of using a chain saw … the diverse effect of enzalutamide on different men is evident this week. And wait to the end to hear how important it is to “Be Your Own Best Advocate!”
Topics Discussed
Recurrence complicated by urethral strictures; are PSA readings during chemo impacted by the cell cycle?; hemoglobin anxiety & MCHC; PSA trends down afer spot radiation; use the same lab for all tests!; AS vs surgery … for a kidney cyst!; access Medicare if you are on SSDI; Xtandi hurts QoL for some men … but not others; doctor wants to treat suspicious lesion in newly Dx man – without checking first if metastatic!
Chat Log AnCan
Rick (to Everyone): 3:27 PM: Does early salvage radiaiton save lives? https://prostatecancerinfolink.net/2015/01/26/does-early-salvage-radiation-save-lives/
Peter Kafka (to Everyone): 3:51 PM: DR. Feng at UCSF is the top Rad Onc; he came from Michigan and does considerable research
Peter Kafka (to Everyone): 4:59 PM: Indiana Univ has some Ga68 trails.
AnCan – Rick (to Everyone): 4:59 PM: Next Month ….. 1st and 3rd Tuesday …. NOT 2nd & 4th
AnCan – Rick (to Everyone): 5:00 PM: clinicaltrials.gov
Shamsul Chowdhury (to Everyone): 5:02 PM: Anyone there has any experience of Proton beam therapy! Thanks
Jake Hannam (to Everyone): 5:04 PM: Make the Most From the Internet https://www.youtube.com/watch?v=UdSW86R8LsE&list=PLDlL6phvnOTyCynAKkOUKPMhFKaKFx
