Editor’s Pick: Even amongst the best GU med oncs, some work with you and some do not. Hear how one makes it tough to access darolutamide (Nubeqa) while another does not.
Topic Discussed
Handling transition after intial treatment on RT + ADT; recurrence after RP 7 yrs ago; locating a PSMA scan; partial ADT holiday; using lighter exercise to fight fatigue; enzalutamide crippling – access darolutamide; staus of NHI PSMA trial; don’t fall for questionable trials; what next after PARP?; incontinence no more; SBRT salvage radiation; hernia experiences
Chat Log
Ron Bucher (to Everyone): 5:18 PM: I attended advanced groups before I became an advanced patient, and I’m glad I did.
Herbert Geller (to Everyone): 5:56 PM: https://www.uclahealth.org/urology/iuo/an-experimental-imaging-scan
Herbert Geller (to Everyone): 5:59 PM: Nat Rev Urol . 2016 Apr;13(4):226-35. doi: 10.1038/nrurol.2016.26. Epub 2016 Feb 23. Current use of PSMA-PET in prostate cancer management Tobias Maurer 1, Matthias Eiber 2, Markus Schwaiger 2, Jürgen E Gschwend 1 Affiliations expand PMID: 26902337 DOI: 10.1038/nrurol.2016.26
Len Sierra (to Everyone): 6:00 PM: PSMA as therapy: https://www.prostatecancer.news/
Jeremy (to Everyone): 6:16 PM: Master Ming Tong Gu https://www.youtube.com/watch?v=Oj0ewBvr6zM&list=PLnQPg9ef3v52NHuQ1WIO8yjN-2yqpqIcs&index=13&t=4s
Len Sierra (to Everyone): 6:18 PM: You have to go to: smile.amazon.com
Russell Smith (to Everyone): 6:24 PM: Just signed up on Smile.amazon.com
Editor’s Choice: So much tonight inc 30 gents!!! My choice – maybe the new Dx G4+5 with a suspicious image on L5; or, ECE with just 5mm of G3+4??? (rd)
Topics discussed
New Dx G4+5 with a suspicious mass; MRI shows ECE with tiny amount of G3+4; treating oligoMX the Kwon way; incontinence – do your Kegels!!; Procrit may finally help low blood counts; do stains mask your PSA?; addressing hot flashes; continued success on abi; penile Mx still a puzzle
Chat Log
John Ivory (to Everyone): 3:24 PM: Jim, I found this 5 min. video by the head of the Prostate Cancer Research Inst. (PCRI) in thinking about surgery vs. radiation https://bit.ly/3fSQQ37
Carl Forman (Private): 3:26 PM: just to let Jim know about the patient guide from PCF.org
Jeremy (Organizers): 3:47 PM: Rick, just got back from my second opinion at UCI w Dr. Edward Uchio. They agree that the MRI report is not consistent with the biopsy findings. My UA showed I have a bladder infection. So I’m holding off on surgery and going to undergoe genomic testing and antoehr MRI. Thank god I found you guys.
Herbert Geller (to Everyone): 3:58 PM: There is no PSMA PET in Pitt. But there is an ongoing trial at CWRUhttps://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2018-00468&r=1
AnCan – Rick (to Everyone): 4:34 PM: https://www.urotoday.com/video-lectures/prostate-cancer-foundation-2019/video/1593-the-impact-of-vitamin-d-and-statins-on-prostate-cancer-outcomes-lorelei-mucci-and-elizabethplatz.html
Editor’s Pick: We visit with the radiation bump twice this week …. and hear about treatment success!
Topics Discussed
Drug costs; renal lesions; beware the radation bump!; anemia & edema from chemo; 3 yrs of HT alone brings success; Cipro warnings; PARP-I’s and PCa; PSMA scan availability; hot flash remedies; PSA rises post brachy+IMRT+HT
Chat Log
scott (to Everyone): 5:14 PM: does anyone read notes in chat window?
Len (to Everyone): 5:16 PM: Yes, most of us do, Scott.
Carl Forman (to Everyone): 5:23 PM: Oct 15 – Dec 7 is Medicare open enrollment period, where you can change your drug plan for 2021. Go to Medicare.gov to do your research for the right plan.
Len (to Everyone): 5:24 PM: From Dr. Russell Szmulewitz, (U Chicago) director of the clinical trial showing equivalent effectiveness of Zytiga with food at ¼ the dose with a low fat meal. “Abiraterone, approved in 2011 for the treatment of metastatic prostate cancer, has a “food effect” that is greater than any other marketed drug. The amount of abiraterone that gets absorbed and enters the blood stream can be multiplied four or five times if the drug is swallowed with a low-fat meal (7 percent fat, about 300 calories). That can increase to 10 times with a high-fat meal (57 percent fat, 825 calories).”
Herbert Geller (to Everyone): 5:25 PM: Low-Dose Abiraterone in Metastatic Prostate Cancer: Is It Practice Changing? Facts and Facets. Patel A, Tannock IF, Srivastava P, Biswas B, Gupta VG, Batra A, Bhethanabhotla S, Pramanik R, Mahindru S, Tilak T, Das CK, Mehta P. JCO Glob Oncol. 2020 Mar;6:382-386. doi: 10.1200/JGO.19.00341. PMID: 32125899 Free PMC article.
Len (to Everyone): 5:32 PM: Dear Len Sierra, It is our pleasure to inform you that you have been approved for 2020 participation in the Prostate Cancer Copay Assistance Program. This allows you to receive assistance through 12/31/2020. If you have any questions regarding this notification, please contact a Patient Advocate at (855) 318-3298 Monday through Friday, from 9 a.m. – 6 p.m. ET
scott (to Everyone): 5:50 PM: gotta go to meet the teacher night….best to everyone
Russ Smith (to Everyone): 5:58 PM: Good night all, I have a test to complete.
Peter Kafka (to Everyone): 6:18 PM: It is the psa doubling time that is the trouble indicator Anything under 3-months is the Warning Sign. Even at low numbers
Peter Kafka (to Everyone): 6:22 PM: I was low at those low #’s and the PSMA scan showed me where the action was.
Len (to Everyone): 6:31 PM: Contact: Yolanda McKinney, R.N.(240) 760-6095 ymckinney@mail.nih.gov 10 Center Drive Bldg10/B3B81 Bethesda, MD 20892
Editor’s Pick: Very rare penile metatstasis …. not to mention two younger men diagnosed, one denovo metastatic!
Happy Bastille Day ……. Topics Discussed
younger G9 man experiences recurrence; older man experiences recurrence; another younger denovo Mx man needs GU med onc on team; stock medicine cabinet before starting chemo; Neulasta patch falls off!; enzalutamide …. & bad dreams; let’s compare C11 with an Axumin scan; prepping for surgery and how to follow up; feeling mets grow in your penis!
Chat Window
BARBARA DYSKANT (to Everyone): 3:09 PM: I will need to leave soon because Barry isn’t feeling well tonight. He will get another transfusion tomorrow (2 units this time) — help is on the way. I will stay in touch, of course. Have a great night.
AnCan – rick (to BARBARA DYSKANT): 3:13 PM: Got it B – feel free to come in and out!
BARBARA DYSKANT (Private): 3:13 PM: THanks Rick!!!! Have a great night.
Len (to Everyone): 3:15 PM: ancan.org
Len (to Everyone): 3:45 PM: From the TOPARP clinical trial: “Of these 16 patients, 14 (88%) had a response to olaparib, including all 7 patients with BRCA2 loss”
Madhav Mohan (to Everyone): 3:47 PM: Thanks Carl. can you repeat the name of the new drug you got on?
Madhav Mohan (to Everyone): 3:50 PM: my pre-surgery gleason was a 4/5.
Madhav Mohan (to Everyone): 3:51 PM: this was confirmed on the post surgery pathology – Primary was 4 and Secondary was 5
Madhav Mohan (to Everyone): 4:14 PM: Thanks Peter, Carl, Len, Rick. Real useful information. I checked my Genomic Assay – the mutations were in BRCA1, CDK12 which they called out and also mentioned NF1 and TERT
Len (to Everyone): 4:16 PM: The BRCA and CDK12 mutations are “actionable.” Not the others.
Madhav Mohan (to Everyone): 4:16 PM: Thats what they said, Len.
Madhav Mohan (to Everyone): 4:17 PM: :))
Carl Forman (Private): 4:29 PM: Curious about the new guy from last week who was told he has weeks to live, and was hopefully going to see Paul Corn. Have you heard from him since?
AnCan – rick (to Carl Forman): 4:32 PM: we set him up with Corn – this week I think
Gene Spesard (to Organizer(s) Only): 4:37 PM: Got to leave. Dog demands food.
AnCan – rick (to Everyone): 4:50 PM: PCa pamphlet http://urology.ucsf.edu/sites/urology.ucsf.edu/files/uploaded-files/attachments/localized_prostate_cancer_and_its_treatment_1.pdf
Nick (to Everyone): 4:59 PM: Thank you for all the valuable info and well wishes.
John A (to Everyone): 5:17 PM: “Prostate cancer with penile metastasis: a case report.” Hinyokika Kiyo 2005: 519(1);771-3. Sawada A, et al. Patient improved on Estramustine, Paclitaxel and Carboplatin.
Len (to Everyone): 5:19 PM: https://mpcproject.org/home
(Editor’s Note: What a meeting ….. 26 particpants with SIX (6) new men; 2 under 60 ….. in particular, catch John G and Doug M.)
Topics Discussed
8 months of treatment and docs say no more can be done!!; de novo penile metastasis; recurrent PCa in younger man; disease returns after 10 years!; de novo Mx Dx for scientist at NIH; HT side effects; atonic (non-contracting) bladder; intimacy references; weekly docetaxel regime; metformin recall
Chat Log
Len (to Everyone): 5:10 PM: www.ancan.org
Peter Kafka (to Organizer(s) Only): 5:22 PM: Micro Satelite Instability
Len (to Everyone): 5:29 PM: Genitourinary Oncologist
Peter Kafka (to Organizer(s) Only): 5:33 PM: Sir – Spheres for Liver Cancer mets
joed2: 5:34 PM: Microspheres for liver lesions
Jake Hannam (to Everyone): 5:38 PM: rd@ancan.org
Ancan – Rick (to Everyone): 6:12 PM: clinicaltrials.gov
Russ Smith (to Everyone): 6:34 PM: Under-60 Advanced Prostate Cancer July 9 @ 7:00 pm – 8:30 pm EDT |Recurring Event (See all) GoTo Meeting – Barniskis Room Back in mid-2012, the US Preventative Services Task Force first made the following recommendation with an associated D Grade: The U.S. Preventive Services Task Force (USPSTF) recommends against prostate-specific antigen (PSA)–based screening for prostate cancer. At the time, prostate cancer advocates objected strongly, warning it would result in many more men diagnosed de novo metastatic, and ultimately more disease specific deaths. Sadly, we have seen this manifested, especially with respect to younger men. AnCan clearly sees the trend along with a lack of support…
Ken Anderson (to Everyone): 6:36 PM: good post Russ….
John I (to Everyone): 6:47 PM: walter stadler is at U of Chicago–I saw russell szmulewitz at U of C & loved him bue insurancacemade me stop John I (to Everyone): 6:49 PM: alicia morgans https://www.nm.org/doctors/1417011529/alicia-k-morgans-md-mph
Russ Smith (to Everyone): 6:49 PM: Joe, email me at *******. I am from Chicago and on ADT, Lupron and Casodex, I use Trimix.
John I (to Everyone): 6:52 PM: Alicia Morgans’ telephone 312.695.0990 John I (to Everyone): 7:05 PM: Thanks MUCH for your hospitality everyone
Ken Anderson (to Everyone): 7:06 PM: thanks for stopping by……
