Editor’s Choice:Hear social media phenom, Bryce Olson, a 50-yr old metastatic prostate cancer patient, speak about his treatment to date and how he plans to find a personalized and innovative path forward. (rd)
Topics Discussed
Young, metastatic man Bryce Olson & his virtual brainstorming strategy;oral LHRH relugolix; holding steady on LHRH+abi; oligo-Mx strategies; cario issues around LHRH; PSA variability; PSA v scans; how do you know if you’re PSMA avid?; chemothreapy or 2nd line androgen therapy for recurrence; when to stop adjuvant ADT; abi +LHRH stem denovo Mx – debulk?
Chat Log
Bryce Olson (to Everyone): 6:02 PM: Bryce is on too. Took me a sec to get mic and camera working
Mark Perloe : 6:26 PM: Thanks for the ORGOVYX email. It will be interesting on cost and availability.
Brad Power (to Everyone): 6:27 PM: Wired: One Man’s Search for the DNA Data That Could Save His Life. https://www.wired.com/story/one-mans-search-for-dna-data-that-could-save-his-life/
Larry Fish (to Everyone): 6:28 PM: An A.I. challenge – deep Mind – individual now, but how to make it universal
John I (to Everyone): 6:29 PM: Thanks, Brad. Any other links you have are welcome–interesting (though frustrating & emotional) story
Brad Power (to Everyone): 6:29 PM: https://www.researchtothepeople.org/bryce
AnCan – rick (to Everyone): 6:36 PM: Guys – please sign up to our Blog and you’ll get a note that the recording has posted. https://ancan.org/blog/ Our groups are ALWAYS recorded, Larry.
Ancan – Jake Hannam (to Everyone): 6:40 PM: Thanks to Peter Monaco for posting our videos!
Tracy Saville (to Everyone): 6:40 PM: Done. Added myself as a monthly US TOO donor as well.
Brad Power (to Everyone): 6:45 PM: Topic: Bryce Case Launch Time: Dec 23, 2020 09:00 AM Pacific Time (US and Canada) Join from PC, Mac, Linux, iOS or Android: https://stanford.zoom.us/j/99737755758?pwd=VEFETlhqckMxU3VQT2lZY1Vod0cxZz09 Password: 016550
Bryce Olson (to Everyone): 6:53 PM: Thank you so much guys! It was an honor to be with you tonight
John I (to Everyone): 6:54 PM: Thank you, Bryce–and Brad too!
Mark Perloe (to Everyone): 7:41 PM: I would want to know if radiation might be indicated for spot treatment.
Mark Finn (to Everyone): 7:50 PM: Rick – gotta go. Please let me know if there are any issues with my case that I can share next time. BTW – I had chemo after prostectomy with only a few lesions.
John I (to Everyone): 8:00 PM: Gotta run. Merry Christmas to those who celebrate it!
JImmy Greenfield (Private): 8:07 PM: Rick I may be down to Nancy Dawson, no one is coming through on the 2nd opinion. Do you like her enough?
Things don’t always go the way we plan … or want.- from the recent elections to our health, to just taking care of daily biz. We have to be careful how that impacts the way we interact with others. Peter’s thoughts crystalllize how our emotions can impact many more than just us (rd)
“WINNING AND LOSING”
As I sit at my desk, it is Monday morning November 2nd the day before election day. I woke up this morning thinking of this theme and how applicable it is to those of us dealing with a cancer diagnosis. In our case a diagnosis of Prostate Cancer.
For 24 years my final career was as a maintenance supervisor for Haleakala National Park. One of my duties in that position was to be a Heli-Manager. This involved coordinating and managing the ground operations for the periodic use of contract helicopters that we used to transport firewood and other materials to the Park’s historic backcountry cabins. This job had many inherent dangers including hooking up a swivel cable to the belly of a helicopter hovering just a foot or two over my head, loading cargo nets with materials to be sling loaded to the drop sites, calculating the weights of each load, ensuring the safety of myself and that of the rest of my ground crew and communicating by radio to the pilot and others of my crew on the receiving end of the cargo. It was a lot to keep track of, and it required a high level of intensity and concentration.
One Monday morning during this operation one of my employees came to work, and his home state professional football team had lost in the playoffs the day before. He was pretty bummed out. So bummed out that I didn’t take it seriously at first. Afterall, football was just a game in my mind. Life goes on. But in his mind, it was pretty close to the end of the world. I tried my best to get him to “let it go”. But he would not drop his gloomy attitude of defeat. It was so pervasive in him and he would not stop talking about it to the rest of the crew. It was becoming a big distraction and for the safety of our task at hand I had to send him off to do another job on his own far away from our helicopter operations.
I bring up this story because it is all too easy to associate a cancer diagnosis with somehow losing. This can be an insidious and infectious attitude that can not only weigh down ourselves, but those around us including family, friends and even our medical support community. An exaggerated negative attitude and clinging to the feeling that one has “lost” can be a dangerous distraction.
In the bigger picture, we have not lost. Our bodies might be quite challenged due to our diagnosis, but we still have a vital part to play in our family, our workplace, our community and it is NOT to infect all of these others with a bummed-out attitude lest we drive them away, and we quickly will.
Our attitude, like diet and exercise is one of the key things that we have absolute control over. In my own experience if I find myself starting to wake up on the wrong side of the bed, I rearrange the furniture and put THAT side of the bed against the wall so that I have to wake up on the RIGHT side. Bottom line, take responsibility for your own attitude!
Make sure you’ve signed up for our upcoming Connect Education Workshops! These free workshops provide the latest cancer information straight from leading experts, via phone or online. At the end of the workshop, you’ll have a chance to ask the experts your own questions. Register by clicking on the selected link below.
Editor’s Pick: This week’s group is dominated by U-60 men diagnosed denovo metastatic – we speak to FIVE (5)!!!!! USPSTF HEAR THAT!!! A good discussion on abi side effects … AND A HYPERACTIVE CHAT LOG!!
Topics Discussed
Misdiagnosed 1st time leads to denovo Mx Dx for U-60 man 2nd time; post-RP spread managed for 10 yrs w/o HT; 25+ yrs living with G9 advanced PCa!; Keytruda trial for MSI stable man post-olaparib; Rusty’s 1st Football game post-HT!; abiraterone side effects; blood pressure issues from 2nd lin anti-androgens; glucocosticorteroid + enz trial; enz + LHRH for another U-60 denovo Mx man; yet another U-60 denovo Mx man starts RT; enz preferred with heart disease; cancer or sarcoidosis?
Chat Log
scott (to Everyone): 5:03 PM: Sylvester how are you doing?
David Muslin (to Everyone): 5:21 PM: Nicklas Robert Pfanzelter, M.D. (89 ratings) NorthShore Medical Group 847.503.1000 Conditions Adrenal Cancer, Basal Cell Cancer (BCC), Bladder Cancer, Genitourinary Cancer, Kidney Cancer, Lung Cancer, Melanoma, Merkel Cell Cancer, Prostate Cancer, Testicular Cancer, Transitional Cell Carcinoma, Urinary Tract Cancer Procedures Chemotherapy
John I (to Everyone): 5:26 PM: genitourinary
Len Sierra (to Everyone): 5:26 PM: GU = Genitourinary Oncologist
John I (to Everyone): 5:26 PM: (GU) medical oncologist (GU Med Onc)
Joel Blanchette (to Everyone): 5:27 PM: He is close to Alicia Morgans, GU Medical Oncologist
Mark Perloe (to Everyone): 5:27 PM: Alicia is great.
AnCan – rick (to Everyone): 5:28 PM: We are getting there gents …..
John I (to Everyone): 5:28 PM: She’s my doc. very good doc, good at answering questions, taking her time
Mark Perloe (to Everyone): 5:28 PM: I’d also consider OncocyteDX liquid biopsy as up to 50% of the mutations are limited to the tumor and are not inherited.
Jerry Pelfrey (to Everyone): 5:28 PM: do not forget Proton pencil beam as a choice
Ken A (Private): 5:29 PM: advise please on under 60 group
Len Sierra (to Everyone): 5:29 PM: Lynch Syndrome
Mark Perloe (to Everyone): 5:30 PM: SBRT with ViewRay, a device which marries MRI and Linear Accelerator can get treatment for five times. Visit ViewRay.com
Ken Doyle (to Everyone): 5:31 PM: Ken Doyle Info. Age 75, mPC after prostate removal in 2010
Herb Geller (to Everyone): 5:34 PM: BRCA1 or BRCA2
Jake Hannam (to Everyone): 5:34 PM: BRCA mutation
John I (to Everyone): 5:36 PM: I also had a good experience with Russell Szmulewitz at UChicago too–had to change because of insurance network changes
Carl Forman (to Everyone): 5:41 PM: In case I don’t have a chance to speak tonite, I wanted to throw out to the group if anyone has had experience with Keytruda, which has been dicussed by my Oncologist as a clinical trial treatment option for me.
AnCan – rick (to Everyone): 5:41 PM: Big subject Carl – should be discussed.
Ken A (to Everyone): 5:42 PM: Carl – Paul has advise me that it was in my future…
John I (to Everyone): 5:45 PM: active surveillance
Jake Hannam (to Everyone): 5:45 PM: active surveillance
Jake Hannam (to Everyone): 5:47 PM: Axumin
Jake Hannam (to Everyone): 5:49 PM: PSMA
scott (to Everyone): 5:52 PM: gentlemen: I have to go at 6 pm to make dinner….see you on another call
Ken A (to Everyone): 5:53 PM: hey Scott lets try that lunch once again.
Peter Kafka (to Organizer(s) Only): 6:00 PM: Wow! A 30 year journey as a GL-9 with BRCA +, A poster man! I hope I get half that kind of run.
Ken A (to Everyone): 6:02 PM: Dang I agree 100 percent…..
Peter Kafka (to Organizer(s) Only): 6:34 PM: Just letting you all know that I spent 2 hours on the phone with my buddy Mr. Sharma in Delhi, India the other day. This was my 2nd round with Del Service from India. I think we got my sound problems resolved this time. I now have a 1-year service contract and Sharma recommended that I check in at least every 2 months if not every month for a “tune up”.
AnCan – rick (to Everyone): 6:40 PM: Theraworks
John I (to Everyone): 6:42 PM: spelled theraworx
AnCan – rick (to Everyone): 6:42 PM: tx John
Jeffrey Bates (Private): 6:43 PM: Thanks John
Jeffrey Bates (Private): 6:54 PM: who is the balding man with glasses an grey/black goatee. he is sitting on couch with blue blanket behind him and a window
AnCan – rick (to Jeffrey Bates): 7:02 PM: John Ivory also young like you; in Chicago.
John I (to Everyone): 7:02 PM: Yes–you saw it?
AnCan – rick (to John I): 7:03 PM: Please connect with Jeff B
Alexa Jett has recently connected with AnCan – initially to co-moderate the planned thyroid cancer virtual group we hope to start by year-end. But subsequently her infectious, warm and enthusiastic pesonality opened volunteer opportunities with us. Alexa recently directed The TALK – MS webinar, and she has introduced the Renal Meduallry Carcinoma (RMC) group to us wthat will have its first meeting this ocming week. Now we are working on Adolescent & Young Adult (AYA) opportuities.
Alexa survived recurrent papillary thyroid cancer, most recently in 2019. First diagnosed in 2017, aged 25, Alexa was treated at M.D. Anderson. Whilst there, she refequented Kim’s Place – the AYA retreat where she met one of our RMC moderators, caregiver Charissa Monroe, who lost her husband to RMC.
ESPN published an article this week on how Kim’s Place came to be, and Alexa was interviewed extensively, It was just published on The Undefeated blog and you can read it here:
