Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant & Telix
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
Apologies to all who attended live last night! GoTo issued a massive update over the weekend and did not advise their customers. Some folks couldn’t even open their rooms – in our case we lost video. Citrix support was less than honest, causing even more grief. As you saw we had to shut down the room and restart after they reset our settings. It put me in a very grumpy mood … :-(( – apologies if I offended anyone!
Editor’s Pick: I could go for the very end with ice cream and Capt Joe’s tips on koi – BUT how about somatic testing?! It’s so important, many docs don’t test, and when they do, forget to repeat!
Topics Discussed
Dx at a young 80, denovo Nx; time to switch from the VA?; Gents wants to add abi but doc reluctant; chemo fails – nothing sticks… what next but somatic testing!; multiple treatment modes at one time;…and another without answers who needs testing and a GU med onc; retention issues from RT damage – back to rad onc; our foamy gland guy holds steady; switching to Metformin for diabetes … and cutting out the ice cream!; all you ever wanted to know about keeping koi!
Chat Log
rd sent · 5:31 PM DELMARVA gents… organize a lunch!!!
rd sent · 5:48 PM somatic testing
Julian – Houston sent · 6:31 PM good evening everyone – see you next week! Thanks!!!
And when we say free, we mean that in addition to the lesson being free, the supplies will also be free, too!! We are SO happy that we are able to offer this class – especially because it will benefit a community of individuals that is much more in need of mental health benefits than they might realize.
Last day to register is June 19th. We want to make sure everyone receives their supplies on time!
Your instructor, Hannah Garrison, currently works with the VA hospital system in San Antonio, TX, as a creative arts instructor for their psychiatric units. She has been there to witness the incredible mental health benefits of a creative arts practice in the individuals she works with. We’re here to provide space for a community of like-minded individuals. Starting a new hobby can be intimidating, so that’s why we are so happy to be able to provide your supplies completely free.
PLEASE send this class registration to any and all Veterans you know, that may be interested.
We’ll be using watercolors and watercolor pencils! You’ll be receiving everything needed to complete this project in our class time – minus any napkins and water, of course.
Are you a Veteran in need of some virtual support? Whether you have chronic illness, cancer, mental health concerns, etc; we welcome you with open arms. We’re a virtual support group filled with other peers who have a lot of advice and support to offer.
Next meeting is June 22nd at 8pm ET / 5pm PT. Drop in HERE. No need to register.
Looking to make some art a little sooner? We have our next general art class on June 8th at 8pm ET! It’s free, and it’s BYOAS (Bring Your Own Art Supplies). We’re making an acrylic painting on canvas!
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023
AnCan is grateful to the following sponsors for making this recording possible: 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: Handcuffed by HMO, making the best of it. (bn)
Topics Discussed
Memory issues, but HMO won’t allow him darolutamide — try monotherapy abi?; tumors block TURP surgery, hoping ADT will ease surgeon’s job; AnCan pushes for better Orgovyx pricing; acupuncture and hot flashes; abi first, then enzalutamide — not the reverse; doing well on daro doublet after chemo; Orgovyx probably won’t thin the fog; mulling DEXA scan report; daro monotherapy addresses heart issue; filling the need for exercise with an e-bike; how much vitamin D?; grateful after switching to a GU oncologist; keep alert to side effects in Xgeva and Prolia; AnCan’s prostate cancer forum is back (https://ancan.org/forums); Embr Wave outdoors; landing an appointment with Oliver Sartor.
Chat Log
Harry Spila · 7:58 PM gotta go, take care everyone
AnCan – rick · 7:59 PM Happy riding!
Harry Spila · 8:00 PM 🚴
Mike Yancey – Oklahoma · 8:06 PM Gotta run
julian – houston · 8:06 PM great conversation, as always. Enjoy your Memorial Weekend!
Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
Hello friends! We have yet another recording for art class! This time we have May’s art project: Twilight In The Pines! Last week we got to use acrylic paint for this serene piney scene at the twilight hour. We had a great time, and we even celebrated longtime participant, Karen Broder’s birthday!
If you’d like to give it a try for yourself, check out the video below:
Check out supplies here:
Canvas 9x12in OR your size preference
Acrylic paints: Two types of Blues (I’ll show you how to make more blues if you don’t have another)/ Orange / Pink (I used a dark pink; can use red if needed) / Yellow / White / Black
Brushes: Flat 3/4in or similar / Fan brush small size OR Round brush if you don’t have a fan brush
Water
Napkins
Option: something to cover up anything you don’t want paint splatters to get on
Know someone who wants more information about our art classes? Send them over to our Art Class FAQ HERE
You can also check out past class there, too!
Our next class will be held a little bit earlier than usual: Thursday June 8th at 8pm ET
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
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 9, 2023
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: Rural denovo metastatic man 6 years out thrives with high PSA … but needs a GU med onc all the more! (rd)
Topics Discussed
Denovo Mx man thrives for 6 years with high double digit PSA; post-ADT, the T’s coming back!; small PSA increase on Pluvicto doesn’t mean failure; single session palliative spot RT + Bx to check disease; T slowly rising on mono daro; starting Xofigo to combat PSMA +/- PCa; what does Dr. A have in store for our BRAF man?; Mayo man moves to Sartor; hard to come by PSMA scan deferred until PSA rises; TMB vs PSMA vs PSA; can you start HT on mono daro?; quick review of CancerABCs conference.
Chat Log
Len Sierra sent · 3:09 PM Does Medicare insurance cover EMBR?
Frank Fabish Columbus OH sent · 3:09 PM I’m not sure
Vic St. Louis, MO sent · 3:10 PM I think only if prescribed by MD as medically necessary
John A sent · 3:27 PM genito-urinary medical oncologist
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.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
You’ll love April’s guest, Tara Lazar!
Street magic performer. Hog-calling champion. Award-winning ice sculptor. These are all things Tara Lazar has never been.
Instead, she writes quirky, humorous picture books where anything is possible. Tara has been, however, a champion adult figure skater, but because of primary progressive multiple sclerosis (MS), she now walks with a walker and drives with hand controls.
She can still figuratively skate, as seen in her book, Little Red Gliding Hood; put on a pair of detective gumshoes, as she did in 7 Ate 9: The Untold Story; and trek into the world of “fun and entertaining vocabulary building” for older kids in her most recent book, Absurd Words, which won a Golden Kite award from the Society of Children’s Books and Illustrators.
She is known by other kid lit writers for her blog, Writing for Kids (While Raising Them), and for hosting her annual Storystorm challenge that attracts more than 2,000 writers to come up with thirty picture book ideas in thirty days.
Tara read from her award-winning kid literature, but let’s be honest, can be enjoyed by kids of all ages!
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.
