Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 15, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
Welcome AnCan’s first 2024 webinar with two blockbuster headliners — GU med onc Dr. Oliver Sartor and nuclear medicine pioneer Dr. Phillip H. Kuo — “Radionuclide Diagnostics & Theranostics – Theory and Clinical Practice Meet!” Register now at https://tinyurl.com/radionuclide – free as always. Two globally recognized experts introduce us to radionuclide scans and treatment, and help us understand how best to coordinate our care team.
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: Four new men give us plenty to talk about. (bn)
Topics Discussed
With “innumerable” metastases, he braces for chemotherapy; urologist blames the patient for ADT mood swings, and also fails to prescribe second-line drug; focal therapy might be right for post-radiation recurrence; PSA nearly 50 but biopsy claims he’s Gleason 6 — prostatectomy proves otherwise; colon cancer’s genetic tie-in with prostate cancer; drug holiday’s an option, but keep calm when PSA creeps up; “I’ve been to the four corners of the United States” seeing doctors — Dr. E is next; don’t put off somatic testing, and consider abiraterone monotherapy; let precision medicine target your BRCA before considering a clinical trial; vomiting worsens with with each Pluvicto round — seek palliative care!; wobbly testosterone recovery; even without testosterone, getting stronger through exercise.
Chat Log
Peter Kafka – Maui · 8:23 PM
somatic genetic testing
AnCan – rick · 8:28 PM
Men Speaking Freely https://ancan.org/men-speaking-freely/ Thursday, 8.00 pm Eastern in this room. Just drop-in
AnCan – rick · 8:37 PM
Genitourinary Medical Oncologist
Peter Kafka – Maui · 8:39 PM
peterk@ancan.org
AnCan – rick · 8:46 PM
Channing Paller https://www.hopkinsmedicine.org/profiles/results/directory/profile/3138167/channing-paller
AnCan – rick · 8:50 PM
PROMISE https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan – rick · 8:54 PM
Steven don’t forget Men Speaking Freely on Thursday
dennis NJ · 9:10 PM
Thank you everyone
AnCan – rick · 9:17 PM
Elisabeth Heath https://www.karmanos.org/karmanos/karmanos-physician-directory/heath-elisabeth-8225
Frank Fabish Columbus OH · 9:39 PM
Thanks everyone. got to go.
Gary – New Jersey · 9:41 PM
Thank you everyone for the discussion and your suggestions. Have to go now.
“Thomas” Matica WA · 9:52 PM
Thanks, Len. I’ll look it up.
Len Sierra · 9:54 PM
HK2 : Human kallikrein-related peptidase 2 (hK2) is a tumor-associated member of the kallikrein family that shares significant homology to prostate-specific antigen and is minimally expressed in normal non-prostate tissues.
Jeff betz · 10:02 PM
Gotta go guys thank you!
AnCan – rick · 10:08 PM
https://ancan.org/your-dental-health/ Dental Posts
Len Sierra · 10:12 PM
Phase 2 study suggests that Abi monotherapy may be as effective as Abi + ADT. Published in journal Nature. https://www.nature.com/articles/s41391-022-00533-6
Steven Roberts · 10:13 PM
ok, fellas I got to drop….talk to you all next week and thanks
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 9, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
Welcome AnCan’s first 2024 webinar with two blockbuster headliners — GU med onc Dr. Oliver Sartor and nuclear medicine pioneer Dr. Phillip H. Kuo — “Radionuclide Diagnostics & Theranostics – Theory and Clinical Practice Meet!” Register now at https://tinyurl.com/radionuclide – free as always. Two globally recognized experts introduce us to radionuclide scans and treatment, and help us understand how best to coordinate our care team.
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: Three things that are slow to change — liver enzymes, testosterone, and hormone sensitivity. (bn)
Topics Discussed
Skip the Lupron and do 2nd-line monotherapy off the bat?; dealing with ADT via antidepressants; he’s looking down the road at Pluvicto; weighing two clinical trials — or none; great first encounter with Dr. Heath; hey, don’t you want to know the Gleason score?; what made his cancer mutations jump?; hold off Keytruda if there’s no MSI?; liver tests slow to recover after abi; stay calm restarting ADT after a drug holiday; back chasing ZZZs; a few zaps with X-rays, or many with protons?; sciatica probably wasn’t the Lupron shot; how quick a rebound after Lupron?; an unexpected test (CEA) from Dr. E; radiation cystitis 8 years out
Chat Log
Steve Roux, MI · 6:13 PM
I’m glad to hear that because I ordered that same one today!
You already know that at AnCan we are all peers, did you also know how much we love sharing resources with you? Well I have a resource that I would love to share! Camp Mak-A-Dream.
The view at CMAD
I had the absolute privilege of attending last year’s YAC (Young Adult Conference) for campers aged 18-35 with my fiancé Brian, and I’ve already applied for this year’s YAC since applications opened January 3rd. I enjoyed it so much that I set a reminder on my phone so I could apply as soon as possible!
I had heard about CMAD from lots of people in the community. From an AYA social worker, friends, and it was even mentioned on our webinar with Nancy Novack from Nancy’s List – Nancy’s Top Ten An Evening with Nancy Novack. To be honest, I was concerned it was overhyped. No place could be that incredible, but it is.
Camp Mak-A-Dream is in Gold Creek, Montana which was unbelievably gorgeous. I had to pinch myself every time I went outside. The ride from the airport (Missoula/MSO) to the camp was mile after mile of scenic beauty. The air is fresh, the grass is green and lush. The airport is used to campers coming in, and even TSA is super nice!
So what was it like?
Staff were waiting at the airport to greet me with snacks and drinks. I met my fellow campers and we chatted. T Staff take care of your luggage and guide you to the bus. No worries about transportation here, they have it covered to and from airport. As soon as I exited the CMAD bus when we arrived, people where cheering for me and rushing to give high fives and pats on the back for a warm welcome. I felt like a rock star.
Brian with Larry, and me with Roger!
We had to get serious stuff out of the way before the fun could begin, as CMAD is medically supervised, I had to check in with the medical team to go over my medications, and they asked questions to make sure they can take good care of me. They also do this so you know where to get medical help if you need it, and I did, twice. Someone is always on call, and you’ll receive the same care as the oncologists office. One of the medical team members even gave me a check up when I had an issue at breakfast so I could get on with my activities for the day, instead of being at the clinic.
That was great, because as a cancer patient, I’ve been in the clinic ENOUGH! Even though I’m an adult, it gave my mom so much peace of mind to know that I was fully taken care of.
They had fun activities planned to help me get to know other campers, and then we had a full buffet style dinner. After dinner we split up to do activities of our choice, I stayed up and played card games with my fellow campers and laughed so hard I cried, and my stomach hurt. Then it was time for bed.
Every single day was full of activities, however they also schedule rest time daily. You never have to do an activity you don’t want to, and if you don’t feel well, you can always rest.
Here are some activities I did:
Photo Credit – CMAD
Archery, cake decorating, geocaching, scavenger hunt, high ropes painting, coloring, tie dying, cornhole, swimming, air rifle shooting (taught and supervised by Montana Parks and Wildlife), zip lining, outdoor camping, campfires, horseback riding, yoga, meditation, journaling, advocacy class (because you can always learn more!), and so much more, this is a short list!
They have a bunch of other stuff you can do like mini golf, outdoor sports, art, it is incredible.
Everyday I had a chance to connect with my peers regarding our cancer experiences, and at AnCan, you already know how much we support this. I laughed, I cried, and I healed. There are lots of rituals and experiences that they have, that I will not share here, because they were so meaningful to me, and the added benefit of surprise complimented that.
Because I didn’t have to worry about anything (my medications, health, food, dishes, no cell service so no calls, current events, etc) it gave me time to truly focus on myself. It was much needed time designated time for me. I conquered fears, I learned new skills, and I left a much better Alexa.
Would I recommend camp to AnCaners?
YES!
Camp is FREE!! (only have to pay for travel, travel scholarships are available)
I hope you will check out what camps they offer and apply for yourself (or you and your carepartner at their caregiver camp). I hope to see and hear about your camp experiences in the future.
Questions about camp experience I didn’t answer here? Email me at alexa (@) ancan.org.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 1, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
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: Standing up to penis shrinkage — pump or pill? (bn)
Topics Discussed
Tallying our New Year’s midnight owls; relief at last for Peter K.; pondering an immuno-antibiotic interaction; Gemtesa cuts his nighttime bathroom stops but weight-loss drug Mounjaro gives him spots (though blood pressure’s great); weight-loss alternatives Wegovy and Ozempic; PSMA scans — how often will Medicare pay, and will they work with a low PSA; 2nd biopsy after radiation?; what’s this about a treatment with copper?; in weighing actinium vs. chemo, first get a biopsy; put questions for the doc in writing, and give the doctor a copy; never too late for a bone density scan; pump vs erectile dysfunction drugs for staving off shrinkage; combine bladder relaxers for better sleep?; sleep spoiled by stealth hot flashes; untangling the logistics of visiting a distant hospital
Chat Log
Joel Blanchette, Reston, VA · 8:33 PM
Gemtesa
Julian – Houston · 8:34 PM
Off to see my alma mater, Texas Longhorns, play. Happy and healthy and prosperous New Year to all! See you all next week,
Peter Kafka – Maui · 9:20 PM
second line anti androgens”
Peter Kafka – Maui · 9:21 PM
Second line antiandrogens : include Daroludamide, Enziludimide,
Peter Kafka – Maui · 9:21 PM
appaludamide and also Zytiga which works differently is included with this regimen,
AnCan – rick · 9:38 PM
Some spelling corrections: darolutamide/Nubeqa; apalutamide/Erleada; enzalutamide/Extandi; abiraterone/Zytiga
AnCan – rick · 9:39 PM
Trospium
AnCan – rick · 9:40 PM
Trostium – correction
Peter Kafka – Maui · 10:01 PM
Got to go. Happy New Year!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 26, 2023
Once a year in December, AnCan Foundation comes to you for a donation to support our largely volunteer programs. If you’re signed up to get meeting reminders, you’ll also have seen our Annual Fundraising Letter, sent last week. If you value our recordings, please consider making a donation at https://ancan.org/donate/
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
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: That fast-growing cancer doesn’t sound like a Gleason 6 (bn)
Topics Discussed
Despite what the pathologist said, that fast-growing cancer doesn’t sound like a Gleason 6; 12 months of ADT feels skimpy for a Gleason 8; how confidential are my records in the PROMISE trial?; pick up the pace on this neuroendocrine workup; AnCan’s once-yearly funding appeal — your donations will be matched; endocrinologist’s slow and steady approach to tapering off prednisone; don’t let logistics block your path to treatment; as gastroenterologist gives up, bloodwork finds cause of Keytruda patient’s diarrhea
Chat Log
John A · 6:42 PM
dr.john@ancan.org
Peter Kafka – Maui · 6:46 PM
EMBR WAVE
Unknown · 6:47 PM
Embrlabs.com
AnCan – rick · 6:52 PM
Channing Paller https://www.hopkinsmedicine.org/profiles/details/channing-paller
AnCan – rick · 7:06 PM
PROMISE trial https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan – rick · 7:12 PM
40. In patients with high-risk prostate cancer electing radiation therapy, clinicians should 147 recommend the addition of long-course (18 to 36 months) ADT with radiation therapy. 148 (Strong Recommendation; Evidence Level: Grade A)
AnCan – rick · 7:21 PM
Clinically Localized Prostate Cancer: 2 AUA/ASTRO Guideline May 2022
Len Sierra · 7:53 PM
THE MOST COMMON SIDE EFFECTS OF PREDNISONE WITHDRAWALS ARE: Body aches Joint pain Lightheadedness Loss of appetite Nausea Severe fatigue Weakness
J. Ward · 8:00 PM
What is the source of the travel gift card?
Peter M · 8:00 PM
Good night gents. Happy New Year!
AnCan – rick · 8:03 PM
I think Patient Access Network, Jim
Unknown · 8:06 PM
HNY to all Pls remember to make that donation to Ancan…. We are here for you! WE ALL HAVE TO PITCH IN AND DONATE TO ANCAN
AnCan – rick · 8:06 PM
PAN (Patient Advocacy Network) offers a $500.- /year debit/Visa card, which can be used for all manner of public transportation and gasoline or EV charging purchases. Available to patients with a serious chronic conditions whose household income does not exceed 5Xs the Federal poverty level.
“Thomas” Matica WA · 8:10 PM
Thanks to everyone. “Thomas” M
