AnCan thanks the following sponsors for making this recording possible: Novartis, Telix, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Unrelated Newbies from either Coast have almost identical issues.
Topics Discussed
Our two Newbies are ‘twins’ – both denovo Mx on the cusp between high and low volume mets, and both with less experienced GU med oncs; 4x chemo down doing well with a full head of hair!; finding an exercise program; contacting NCI; Orgovyx trumps a 6-mo. depot shot; early radiation cystitis; finding Dr. E; with heart history, Orgovyx or Lupron?; discussing NCI trial & adaptive therapy
Chat
AnCan – Rick sent: 5:55 PM
Technical assistance 877 582 7011
AnCan – Rick sent: 5:56 PM
Playing the Long Game https://www.youtube.com/watch?v=v4jzyAeOtNI
Great Meeting again gang! I’m out – time to walk the dog.
michael perillo sent: 7:21 PM
Hi all, need to leave the meeting. Obviously have quite a bit of work to do re possible change to orggovyx, possible use of radiation, chemo or other triplet approach, possible somatic testing as well as second opinion. Will follw up on future meetings. Thanks Michael
AnCan–John A sent: 7:21 PM
Ok Michael, welcome
Eric James; Tyler TX sent: 7:25 PM
The weight you use is relative to your strength. Weight is usually selected based on how many reps you are to do.
Steve Schuler (Go Seahawks!) sent: 7:31 PM
Did you have doubling time data before going on the ADT?
The reason I ask is that there will be a lag after going off ADT before the DT data will be reliable
Eric James; Tyler TX sent: 7:33 PM
The NCI doc presentation has some overlap with Adaptive Therapy
Steve Schuler (Go Seahawks!) sent: 7:38 PM
Orgovyx will restore your T faster once you get off it
RJ Smith (Seattle) sent: 7:48 PM
ChatGPT, etc.) is not a GU Med Onc. Not even a urologist or MD of any kind.
Steve Schuler (Go Seahawks!) sent: 7:56 PM
gotta drop, love to hear more discussion of the NCI YT video at some point. If that happens after I drop, I’ll view the recording of this session later
Richard B, Silver Spring, MD sent: 8:02 PM
I need to step away due to an early start tomorrow morning. Nothing new to report but more assessments this week. So possible report next week. ‘Appreciate all the conversations. Good night.
dan-s alexandria sent: 8:03 PM
gotta go, gents…. good conversations.
Bruce Schrimpf sent: 8:11 PM
As always it was very informative. Thanks for being “there” for those of us struggling through!
Taking on the role of a care partner can feel overwhelming, but you don’t have to navigate it alone. Many experienced care partners will tell you that with a little guidance, it can also be a deeply fulfilling experience. To help you on your journey, we’ve compiled some helpful resources available online.
1.Leaning Into Grief: An Interview With Claire Bidwell Smith
Claire Bidwell Smith is a therapist, grief expert, and author. Click here for her interview about leaning into grief.
2. Cancer Today: Addressing Anger
Anger and Irritability are normal responses to a cancer diagnosis, and this article offers guidance for care partners of cancer patients.
3. NCCN Guidelines for Patients: Palliative Care
The National Comprehensive Cancer Network released an easy to read, patient-centric Palliative Care guidelines that you can view and download. Click here.
4. “Caregiver Life Hacks”
There’s no one-size-fits-all way to care for someone because every care partner and situation is different. What helps one person might not work for another, but many care partners deal with similar challenges. Click here for some simple “life hacks” that might make your day a little easier.
5. “Caregivers Need Care Too”
“However, primary care partners are also thrust into an unfamiliar world of medical treatments, terminology, and appointments. This is why mutual support between the patient and the primary care partner is important—it is a partnership through thick and thin because both the patient and primary care partner need to learn about the complexities of the disease and treatments needed, as well as make important decisions together.” Click here for the full article.
6. Triage Health Caregiver Resources
Click here for a full list of resources about legal and practical matters like taking time off from work, managing family finances and medical bills, replacing lost wages, estate planning, and other resources.
7. Cancer Straight Talk Podcast: Advice and Support for Cancer Caregivers
The podcast Cancer Straight Talk features host Dr. Diane Reidy-Lagunes speaking with Dr. Allison Applebaum, the founder of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center (MSK). This episode covers navigating the healthcare system and managing the emotions of caregiving.
8. Patient Power: Power of Care Partners: Who Has your Back?
This article is about the crucial role of care partners for people with chronic illness. It distinguishes a “care partner” as a full member of the care team, not just a caregiver. The article also provides advice on practical matters, like having a designated care partner with access to medical records, and emphasizes the importance of care partners looking after their own well-being.
St. Pete High School’s Senior Service Project Supports AnCan
This past December, the seniors from St. Petersburg High School’s International Baccalaureate program came together to make a difference through their annual senior service project. The students organized a community run to raise funds for AnCan.
The event was a success, with over 50 participants joining in to support the cause. Together, they raised over $700 to contribute to AnCan’s mission of empowering people through connection, support, and shared experiences.
“We find pride and joy in the fact that we could bring our community together for a run and spread awareness about the great efforts of the AnCan foundation,” said one of the organizers.
AnCan is grateful to the students, participants, and everyone who contributed to this incredible effort. Initiatives like this not only provide financial support but also help spread awareness about the importance of peer-led support.
Thank you, St. Pete High School IB seniors, for your hard work, creativity, and commitment to making a difference.
Birdability: Accessibility and Inclusiveness in The Outdoors
If you’ve ever been to one of the AnCan art classes, you might know me as the art/ painting instructor. It’s me, hi! I’m the kind of person who likes to make it my business to remind everyone to take a deep breath and smell the roses. Maybe paint the roses, too. Do something you love to do. That’s easy to say to an able-bodied person. What if you’re not quite an able-bodied person, but you still adore outdoor activities, like bird-watching?
That’s where Birdability comes into the picture! Meet Virginia Rose; Birdability’s Founder and Chair Emeritus. Virginia fell off a horse when she was a teenager, and has been a wheelchair user ever since. She and Rick Davis had a chance encounter at the grocery store recently when he helped her reach a bottle of champagne from the shelves. That’s where he learned all about Birdability and Virginia’s passion for merging accessibility with her love for birds and natural spaces.
Birdability works hard to call attention to the need for accessible spaces and an inclusive mindset in places that aren’t traditionally thought of as accessible: the outdoors.
“Often it is the environment that is disabling, rather than the person who is disabled” – Birdbility
Their entire mission is to bring the joys of birding and the outdoors to those who may not otherwise be able to experience it. Birding was a hobby that Virginia really leaned into and it helped her to “discover her best self in nature”. Birding can be for anybody and and body; it’s up to the abled to be welcoming to those who may not be as abled.
Even if you, or a friend, have some visual impairments, there are guides on how to bird watch with limited vision; including using sounds and tools to help with your identification. Maybe some of our VSS people can benefit?
Probably my favorite feature, however, has to be the birding map, which was made in partnership with the National Audubon Society and local contributors. It’s a map intended to help locate accessible trails and outdoor spaces throughout the world. You can filter through so many different features, including surface type (asphalt, concrete, gravel, etc), bathrooms along a trail, parking fees, car birding, and so much more.
I scrolled through other continents just to see what’s out there. I’m sad (but not surprised) to see that there’s not much in he way of accessibility outside the United States, Canada, and Europe. I’m sure there are more parks and places that can be added. I think this just shows how much of a necessary resource that this organization provides. Honestly, I may even use this tool myself to find accessible trails for my own outdoor activities, like painting outside in the park.
“Websites and recommendations from park staff are frequently incomplete — and so unreliable — sources of a location’s true accessibility, and what is accessible for one user may not be accessible for another.”
So many of us want to be outside, but just can’t find reliable information about how to just exist outside. It’s easy to say that an outdoor area has accessible pavement, for example, but is the concrete well-managed and actually accessible for a wheelchair or cane user? Is it on a slope? Are there van-accessible parking spaces? Is there enough shade from the sun? Are there food trucks or other snack/food options? So many things to consider.
That’s where you, if you’re interested in birding, can come in and organize a fun local meetup. You have the tools you need right here!
Anyway, hopefully it isn’t too cold for you to be outside just yet! Go check out Birdability and their Blog and tell us what you think!
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 @or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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.
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: The use of different labs to measure PSA, can lead to inconsistent results. CE
Special Note: Note: Rick Davis and Alexa Jett enjoyed being “live” with Dr. Mark in person for this meeting, also Andrew makes an appearance.
Topics Discussed: High PSA with biopsy; research of treatment protocols; active surveillance; MRI guided biopsy; PI-RADS 4&5 lesions; positive cores not showing up on MRI; anxiety with regards to active surveillance and treatment; elevated PSA – standing alone does not necessitate biopsy; use the same lab for better consistency in lab results; change in tumor size; diet; inflammation; IRE clinical trials; focal treatment; radical prostatectomy; cardiovascular risk factors and pacemakers; risk of infection while wearing a catheter; Decipher score; PCRI Conference; Centers of Excellence; PET scans; potential of cancer spreading outside of the prostate; abnormalities in bladder and rectal wall; SBRT; ProAct adjustable continence therapy; hyperbaric oxygen therapy and its application to prostate cancer treatment; Prostox score; reminder of the other groups such as Men Speaking Freely.
Chat
Eric M. Atlanta
Theranostics I believe is the name?
John A
Igancio, there are several ways we deal with scanxiety. Behavior: exercise, other activities ie yoga, attending groups and sharing. Cognition: distraction, cognitive therapy techniques, mindfulness, meditation. Medication: as needed short term antianxiety meds for panicky anxiety or sleep, or antidepressants which block panicky anxiety. Therapy: behavioral, psychotherapy. Time can lessen it though as rick said even us oldtimers get it, but it’s not so fresh and harsh.
Ignacio
Thank you John! Actually, I do not believe I have “scananxiety” as much as “results anxiety”, not only from scans but also from PSA tests. However, time and experience have helped quite a bit. I have accepted my situation and am willing to take actioin if needed!
Ignacio
Thank you!
John A
MedGasRes. 2018 Oct-Dec; 8(4); 167-171. doi:10.4103/2045-9912.248268 Further application of hyperbaric oxygen in prostate cancer. Lu et al
Gregg – Metro Detroit
Adios guys – gotta go!
John A
clarify spelling/pronunciation: SpaceOAR hydrogel is one brand of the 3 Mark mentioned
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 10, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
UPCOMING WEBINAR – Let’s talk Medicare 2024!Monday, Oct 30 8.00 pm Eastern Register at http://tinyurl.com/ancanmedicare . We plan NOT to make this scary!!!
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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.
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:Does it make sense to keep your cancer off guard?… & the Group talks A-fib! (rd)
Topics Discussed
AnCan loses two long term men on same day; Zometa side effects; 3+3 (??) newbie addresses mets after 20 years; Gent running out of options needs current sequencing … and new doc; does it make sense to keep the cancer off guard?; addressing A-fib; reducing visceral fat with exercise addresses sarcopenia; darolutamide refused so Gent starts with Orgovyx alone; Payer wrongly refusing NGS somatic testing; blood in urine could be RT cystitis – cystoscopy required; PCa recurs only within the gland.
Chat Log
Matt Kriegersent · 3:32 PM
Here are my recent PSA trends, it’s been a bit of a rollercoaster and I would appreciate any feedback. My treatment history is external radiation and HDR brachytherapy completed April 2020, and I was on 2 anti-androgens until June 2022. So 9 (Sept.)/2022 <.06, 1/2023 .06, 3/2023 .06, 6/2023 .35, 7/2023 .17, 8/23 .24, 9/2023 .07 I’m seeing my urologist tomorrow because a few weeks ago, for the only time other than the one biopsy and brachy, I had some blood in my urine – that was surprising but hasn’t happened again since.
sent · 3:35 PM
Too many things to do. You need to talk with the group. You need to make changes now.
Jim Marshall, Alexandria, VAsent · 3:44 PM
Genitourinary Medical Oncologist
John Asent · 3:48 PM
“LHRH antagonist drugs include relugolix (Orgovyx) and degarelix (Firmagon). These will suppress testosterone rapidly and don’t need the premedication with another drug.
Jim Marshall, Alexandria, VAsent · 3:50 PM
Abiraterone for Castration-Sensitive guys is 5MG of Prednisone
John Asent · 3:50 PM
Then, a second dug may be added to add to the testosterone suppression: abiraterone or darolutamide or enzalutamide.
marc valenssent · 3:56 PM
genitourinary MedOnc at Fred Hutchinson in Seattle: Petros Grivas
J. Wardsent · 4:00 PM
I need to hop off now; thanks for allowing me speak about Ken Anderson.
