You’ve heard me say it before and it never gets old… nothing gives me more pleasure than AnCan participants getting together outside our groups to meet and greet.
When a new participant in our High Risk/Recurrent/Advanced Prostate Cancer Group revealed recently he was from N. Virginia, not only was he well received by fellow locals but the cry went up for all to meet for lunch before too long. Capt. Jim Marshall led the charge by arranging a lunch in Alexandria at the end of June. I’ll let him tell you more ….
On Friday, June 30th, the DMV (District of Columbia/ Maryland/ Virginia) Brotherhood of AnCan’s High Risk/ Recurrent/ Advanced Prostate Cancer Virtual Group got together for a luncheon here in Alexandria, VA. We met at the Historic “Table Talk”Diner founded in 1976 that has changed little even in the age of rising property values and upscaling everything. On the first row of the photo L-R, is Joel Blanchette, Gary Peters and then standing L-R, myself Jim Marshall, George Rovder, Jimmy Greenfield, Cliff Collins and Richard Cramond.
It was a great opportunity to compare notes on our life situations and treatments but more important to get to know each other. It turns out I learned General Joel actually jumped out of airplanes in the younger days of his military career. Gary is a retired Federal Lawyer. George worked at the US State Dept. George’s husband is a Canadian and they are heading off camping over the 4th . Jimmy G, as we all know, is into music, can work up a real sweat (exercise) when his (new) band one gets going. In his younger days Jimmy was a full-time music teacher for kids and loved it – he still teaches young and old alike. Cliff was a Professor in the Air Force and regularly does 65-mile bike rides. Richard and I worked in close proximity in the 1970s in the forerunner of Space Force; satellites and things. As far as me, I can be found trimming a Peach Tree and also doing my daily 2-3-mile bike rides; consider I have a 15-year head start on Cliff.
We are looking forward to making this a recurring meeting during the year.
Jim Marshall
If any other AnCan’rs in any of our groups want to organize a ‘meet and greet’, please let us know and we’ll help with the contact information …. MSrs in Michigan???
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 15, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Controversial Death with Dignity discussion starts – and Keytruda shows up more than once at the back end … after passing Dude Wipes along the way! (rd)
Topics Discussed
Talking ‘Death with Dignity’ with AnCan Advocate; urologist refuses Provenge – get a GU med onc!; pros & cons of treating the primary; timing of RT; handling multiple QBs; Bx find no NEC; salvage RT commenced; clean up with Dude Wipes; brain fog/short term memory loss – drug and non-drug remedies; Flomax and brain fog; some Gents take just 2.5mg/daily prednisone with abi; Eligard & ukuleles; another Gent looks to pembro/Keytruda; proteomics; wean off Prolia; pembro vs chemo decision
Chat Log
Ben Nathanson sent · 5:14 PM As the End Nears: Dying with Metastatic Cancer https://join.compassionandchoices.org/a/end-nears-dying-metastatic-cancer Compassion & Choices https://www.compassionandchoices.org States where medical aid in dying is authorized, and dates when it took effect: Oregon 10/27/1997 Washington 3/5/2009 Montana 12/31/2009 Vermont 5/20/2013 California 6/9/2016 Colorado 12/16/2016 Washington, D.C. 2/18/2017 Hawai‘i 1/1/2019 New Jersey 8/1/2019 Maine 9/19/2019 New Mexico 6/20/2021
Joe Comanda (Philadelphia) sent · 5:21 PM I don’t want to cause trouble, but I am troubled by the advocacy of Compassionate Choices, formerly the Hemlock Society. I would hope that men would not take that way out.
Len Sierra sent · 5:23 PM Everyone has to make that decision for themselves. No one else should make it for them.
rd sent · 5:24 PM We think it’ s each person to his own… AnCan believes everyone has a choice, Joe.
Jim B sent · 5:36 PM Hi Bob, I just had a Pluvicto treatment this morning. No side effects so far but I’m sure that dry mouth, nausea and slight fatigue will continue. How is your WBC coming along?
Joe Gallo sent · 5:47 PM Genito Urinary (GU) Oncologist Dr. Eleni Efstathiou
Peter K sent · 6:37 PM I have had 3 med oncs for over a year now. 2 up to a year ago. They are all valuable and I keep them all informed and they all have vaulable input
rd sent · 6:38 PM MDA – maybe the best cancer hospital … but not the best prostate cancer hospital
Peter K sent · 6:42 PM They are doing MRidian SBRT with View Rayt in Michigan- low toxicity in trials
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Stay alert for morphing if your PCa acts weird – and great ACS tip if you need a hotel for medical reasons.(rd)
Topics Discussed
Diagnosed 4+5 in 2009 and still going strong; probably ain’t the abi – gotta exercise !; urinary retention; holding steadyl ; snady mouth and Sjogrens could come from Keytruda; Neulasta side effects; watch for small cell and adjust treatment; lung nodule could just be liquid; 97% continent 9 mo after surgery; seeking a Center of Excellence for RT proved wise; ACS can help with hotels; HT shrinks lesions
Chat Log
Tim Valle and Jen Turner-Valle , Boulder, CO sent · 5:07 PM
It appears that prostate bed recurrence after RP + adjuvant RT is 13.3% (ok, almost 15%), after RP alone is 20.6% in the prostate bed, and after RT in-gland recurrence is 64%.
These are links for Dr. Sartor’s bio. They both have him at Tulane.
Ben Nathanson sent · 5:50 PM
If you would like to schedule an appointment to see me at Mayo, you will need to call the Medical Oncology New Registration Phone Line: 507-284-4137 Fax Line for patient records: 507-266-4973. You will need to indicate that you are a patient of mine from Tulane, and we will help coordinate your records to them. Becky and Brigitte can help with Tulane records.
eric sent · 6:23 PM Have to go, but wanted to check in. I doing well excersing everyday and coaching soccer now. I would just say to the group meditate and be active and live while you do it. Talk to you guys soon
AnCan- rick sent · 6:24 PMTx Eric – try to get by 10 minutes aftr we start so we can check in with you
Very good info. I stayed at Extended Stay America a couple of weeks agp and it cost me $200.00 for one night. When I go back I will ask for the discount. Thank you again for the info.
TonyFig sent · 7:12 PM
Many of the cancer treatment centers have social workers. If you contact the social workers, they usually have arrangements with local hotels for free rooms or discounts, plus gas cards.
Robert Glover (Colorado) sent · 7:12 PM
(contact rd@ancan.org) for Rob Glover’s email re. info on America Cancer society hotel reservation info.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 25, 2023
AnCan is grateful to the following sponsors for making this recording posssible:
Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick:After surgery, 15% of prostate beds are…what, exactly? (bn)
Topics Discussed
Is PSA uptick to 0.155 ripe for PSMA PET?; Keytruda patience paying off; the sweat is real as he sweats out a decision on longer ADT; bad liver enzymes on Pluvicto plus apalutamide — whodunit?; invisible on PSMA PET, he’s starting darolutamide and hoping for the best; how loved ones benefit from your germline test; doubting and defending murky claim that “15% of recurrence is in prostate bed”; PSA uptick is tiny but he hopes to be proactive; docs disagree on more radiation after PSA rise; getting genetic testing in Canada.
Erwin Zoch · 7:17 PM I’m not sure if this is applicable to the question re. recurrence in the prostate bed, but my recurrence is currently confined to the prostate gland per PSMA PET and MRI scans.
Erwin Zoch · 7:22 PM Thanks for the info. I have to leave for an appointment.
Stan Friedman· 7:42 PM Good night, everyone. It’s my birthday today and have a dinner date with my wife.
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick:We are all devastated aboout Herb GRHS – it didn’t have to be this way!
Topics Discussed
Remembering Herbie; another octogenarian with mystery mets; man with a 7.5 Gleason(???) does well on recurrence; community oncologist provides sub-standard care; capaversitib trial failing – sequencing needed; chemo drops nadir – and more sequencing needed; is 8 months ADT enough for early salvage RT?; PSA drops and tumors shrink except for the new one!; Next Generation Somatic Sequencing IS available if your doc says so; monotherapy darolutamide does the trick; exercise + anxietyDr. S accepts our man and orders HT; PROMISE is the path of least resistance.
AnCan- rick sent · 5:23 PM Sponsors Bayer, Pfizer, Janssen, Myovant, Myriad, Telix, Foundation Medicine
sent · 5:36 PM What was Gleason after surgery?
Vic St. Louis, MO sent · 6:15 PM triplet therapy?????
Len Sierra sent · 6:16 PM Good call, Vic. He fits the profile for triplet therapy.
Vic St. Louis, MO sent · 6:17 PM since may 2021!!!
Larry Fish sent · 6:17 PM What kind of scans? Sounds like he may have lit up like a Christmas tree. Then there was probably something to biopsy- eg hip
Vic St. Louis, MO sent · 6:18 PM 10-4
Bob G sent · 6:22 PM Goodnight all. Thanks.
sent · 6:33 PM My name is MarkK and I just joined today. I am stage 4 to the bone and want someone like me to talk to This chat barely works so try spartybbmark@yahoo.com
sent · 6:38 PM Mark Cuban’s discount drug site sells Abbie for $145 for 120 pills. https://Costplusdrugs.com
Pat Martin sent · 6:39 PM I appreciate your input. Going to log off and get this shoe out of my butt that Rick put there See all next Tuesday
Julian – Houston sent · 6:44 PM Thanks everyone! Good discussion as always! Have a good evening.
Len Sierra sent · 6:58 PM Tony, at the site Rick sent you, look for this discussion titled: “Duration of ADT needed with salvage radiation” from Feb 2023
AnCan- rick sent · 7:29 PM Patient Assistance Foundation
On Friday, June 30th, the DMV (District of Columbia/ Maryland/ Virginia) Brotherhood of AnCan’s High Risk/ Recurrent/ Advanced Prostate Cancer Virtual Group got together for a luncheon here in Alexandria, VA. We met at the Historic “Table Talk” Diner founded in 1976 that has changed little even in the age of rising property values and upscaling everything. On the first row of the photo L-R, is Joel Blanchette, Gary Peters and then standing L-R, myself Jim Marshall, George Rovder, Jimmy Greenfield, Cliff Collins and Richard Cramond.