The story of prostate cancer patient, Bryce Olson, is an incredibly inspiring one. Diagnosed at the young age of 44 with de novo metastatic prostate cancer 6 years ago, Bryce’s desire to be here for as long as possible for his young daughter has propelled him to near Rock-Star fame for all patients dealing with advanced cancer. In addition to his penchant for wearing T-Shirts embossed with a heavy-metal gothic font that says, Sequence Me, Bryce has another mantra that he shares with AnCan – “Be your own best advocate.”
Teaming up with various luminaries in the prostate cancer field and high-tech, high-powered bioinformaticians, Bryce is involved in creating a Virtual Tumor Board to help find a cure for his now heavily pre-treated advanced cancer, racing against the clock. He and his collaborators hope to scale up the Virtual Tumor Board concept to help many other individuals as well, in the future. For the uninitiated, a Tumor Board is a treatment planning approach in which a number of doctors who are experts in different specialties review and discuss the medical condition and treatment options of a patient. For prostate cancer, these specialists might include a urologic surgeon, a medical oncologist and a radiation oncologist, among others.
And visit his website here: https://sequenceme.org/ to find out more about his mission to get all advanced cancer patients genome sequenced, and where you can order one of his Sequence Me T-shirts to benefit children with cancer.
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?
Almost 18 months ago, AnCan was honored to host a fascinating, thought provoking webinar titled ‘The Language of Cancer’. To save repetition, click on this link to learn exactly what that means. Essentially we are speaking about how cancer patietns refer to themselves, and how the medical world may employ language that is unintentionally insulting.
By way of example, a doc often say a patient has failed a drug ……. NO, the patient hasn’t failed the drug – the drug has failed the patient!
Just the past week, when we were discussing this very webinar and topic in one of our virtual groups, one of our webinar panelists published a new article on the same old topic in Psychology Today, Prof Jamie Aten is the Founder of the Humanitarian Disaster Institute at Wheaton College, where he also teaches psychology. He has also lived with Stage 4 colon cancer diagnosed 7 years ago, though, thankfully, Jamie is currently NED – No Evidence of Disease.
If you live with cancer or are a caregiver, it’s almost certain you’ll have an opinion on this topic. We welcome your response if you’d like to write your own blogpost!
Having just posted a blog on the FDA approval of Orgovyx (relugolix), I mentioned being disappointed that the FDA stated there was a risk of cardiac electrical irregularities. While this is true, I believe it’s important for me to point out the findings of the Phase 3 HERO trial of relugolix vs. leuprolide, which clearly states there was a significant reduction in the incidence of major adverse cardiovascular events of 2.9% in the relugolix group vs. 6.2% in the leuprolide group (hazard ratio, 0.46).
Another important advantage of oral relugolix was the higher percentage of patients with testosterone recovery to the normal range 90 days after discontinuation of treatment, which was 54% for the relugolix group vs. just 3% for the leuprolide group. This is very important for men who hope to explore IADT, or Intermittent Androgen Deprivation Therapy.
The statement below is an extract from the FDA.gov website reporting on this approval. What I find a bit disappointing is that the FDA mentions that this drug may affect cardiac electrical properties. It was our hope that the relugolix would be less cardiotoxic than Lupron, because the only other direct LHRH antagonist, Firmagon (degarelix) is believed to be less cardiotoxic than all the other LHRH direct agonists (Lupron, Eligard, Zoladex, etc.). It could be that FDA is just being cautious and waiting for more data to see if, indeed, relugolix is less cardiotoxic than the direct LHRH agonists. Time will tell.
From the FDA:
Today, the U.S. Food and Drug Administration approved Orgovyx (relugolix) for the treatment of adult patients with advanced prostate cancer.
“Today’s approval marks the first oral drug in this class and it may eliminate some patients’ need to visit the clinic for treatments that require administration by a health care provider,” said Richard Pazdur, M.D., director of the FDA’s Oncology Center of Excellence and acting director of the Office of Oncologic Diseases in the FDA’s Center for Drug Evaluation and Research. “This potential to reduce clinic visits can be especially beneficial in helping patients with cancer stay home and avoid exposure during the coronavirus pandemic.”
The most common side effects of Orgovyx include: hot flush, increased glucose, increased triglycerides, musculoskeletal pain, decreased hemoglobin, fatigue, constipation, diarrhea and increased levels of certain liver enzymes. Androgen deprivation therapies such as Orgovyx may affect the heart’s electrical properties or cause electrolyte abnormalities, therefore healthcare providers should consider periodic monitoring of electrocardiograms and electrolytes.
Editor’s Pick Terry is totally intimidated by ADT – we gently bring him around….. and a very active and informative Chat this week! (rd)
Topics Discussed
BiTE explanation; recurrent disease handled by uro – switch??; don’t let ADT scare you away; no buffer when restarting ADT after intermittent HT; radiation cystitis; clinical trial leads to Axumin and PSMA scan; exercise and hi-risk/rec/adv PCa; CT scan turns up lung modules – what next??; B12 deficiency; different PSA assays give different results
Chat Log
Mark Perloe (to Everyone): 4:05 PM: Can anyone briefly comment about AMG 160 and AR-110?
Mark Perloe (to Everyone): 4:19 PM: AR110 attaches to the androgen receptor and destroys the receptor. ie, more effective version than enzalutamide and it’s siblings.
Mark Perloe (to Everyone): 4:19 PM: Does it bypass PD1-PDL1?
Dennis McGuire (to Everyone): 4:25 PM: is AR-110 the Arvinas Trial ?
Herb Geller (to Everyone): 4:28 PM: ARV-110 is not a BiTE – it does degrade the receptor.
Herb Geller (to Everyone): 4:28 PM: ARV-110 does not engage the immune system.
Mark Perloe (to Everyone): 4:29 PM: YUP, totally different type of med. It binds to and destroys the androgen recpetor. So maybe like enzalutamide, but would seem to potentially prevent AR mutations that might lead to CR.
Len Sierra (to Everyone): 4:31 PM: I wonder if that could simply accelerate AR-independent tumor growth.
Dennis McGuire (to Everyone): 4:31 PM: If failed on Enzalutamide, can you do ARV-110 ?
Mark Perloe (to Everyone): 4:32 PM: It is only in a clinical trial, but I think that is a pre-requisite.
Ancan – Jake Hannam (to Everyone): 4:36 PM: You can also dial in using your phone. United States +1 (646) 749-3129 Canada +1 (647) 497-9373 Australia +61 2 9091 7603 Access Code: 222-583-973
Mark Perloe (to Everyone): 4:42 PM: I bought elastic bands online for exercise for only $13. Fred Hutch in Seattle has a series of youtube videos on exercises to do at home if you are dealing with prostate cancer. It makes a big difference. I also bought a set of dumbells, but they are hard to find now. I’ve got a Peloton bike on the way.
John I (to Everyone): 4:49 PM: I, too, bought bands, had adjustable barbells, and recently acquired a rowing machine for cardio. The rowing machine is great–stands on end when not in use for a smaller footprint & while mostly for legs & core, also exercises arms
Mark Perloe (to Everyone): 4:51 PM: The ADT offers different options. I was knocked flat at first, but after a month or two, I got used to it. I don’t think I’d win a stamina contest, but ADT+Zytiga has gone very well and should be done in 3-4 months. If Zytiga is an issue, you could consider one of the androgen receptor blockers. Darolutamide appears to have the least mental fog.
Mark Perloe (to Everyone): 4:59 PM:(Oral Antagonist) Is it covered by insurance? It will likely be outrageiously expensive. But an oral antagonist would be great. We hoped to find that for our IVF patients.
AnCan – rick (to Everyone): 5:00 PM: That’s one of their target markets,
Dr.M Mark Perloe (to Everyone): 5:00 PM: Egalolix is an oral antagonist, but it is not as potent.
Len Sierra (to Everyone): 5:01 PM: Herb, I see no news on relugolix FDA approval. Do you have a link?
Herb Geller (to Everyone): 5:06 PM: Actually what I read was that the FDA has a committee set up to review the application this month with likely approval. So it’s not approved yet, sorry.
Mark Perloe (to Everyone): 5:02 PM: Terry, you may wish to get a prescription for cialis, even if you don’t have a partner. It helps preserve for the future.
James Barnes (to Everyone): 5:12 PM: Mark, How often should a typical patient take Cialis while on ADT?
Mark Perloe (to Everyone): 5:16 PM: I’ve ended up getting GoodRx Gold and most drugs are far less than using Medicare part D. Unfortunately, the cost between pharmacies can vary widely, so I end up doing GoodRx mail order for some, CVS for others and Kroger Pharmacy as well. You really have to look for each medication.
John I (to Everyone): 5:18 PM: I’ve got to run early tonight. Have a great week, everyone
alan moskowitz (to Everyone): 5:18 PM: Just joined,
John A (to Everyone): 5:38 PM: James: 5mg once a day was advised for me
Peter Kafka (to Everyone): 5:40 PM: Getting a son/daughter/grandchild involved in the exercise regimen
alan moskowitz (to Everyone): 5:43 PM: Suggest a simple activity (walking with someone), that is a low barrier. First 2x per week, then increase length, pace, frequency. Once that becomes somewhat of a habit, then introduce simple weights / or resistance bands / pushups etc. The key is repetiion. Going to a gym, or getting personal trainer at home might work for some, but for me it presented as a high barrier and too easy for me to give an excuse not to do that.
Regina Hoover (to Everyone): 5:46 PM: I have a book full of PR exercises we started. including 5 lb weights and fast walking so far 3 days a week. I’m working on a group of exercises focusing on stretching to speeding up walking til get slightly breathless. go from there.
Len Sierra (to Everyone): 5:45 PM: Case report of ductal carcinoma of prostate responding to docetaxel. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2845672/pdf/cuaj-2-e50.pdf
David Muslin (to Everyone): 5:51 PM: Frank Fabish, What’s the treatment for the nodules you mentioned? Thank you Frank
Other people do too, as The Hallmark Channel and Lifetime’s viewing schedule would indicate. I’ve been snuggled up with my mom (affectionately known as Mama Jett in the young adult cancer community.) watching a few of the Christmas and Hanukkah selections. Not only are they a wonderful addition to the holiday seasons, but in this year of chaos, they (along with the people of AnCan) remind me this world we call home isn’t so bad after all.
We had our own beautiful story here recently, and I can’t wait to share it with you!
I’m honored to be a moderator for The Chris “CJ” Johnson Foundation/AnCan’sRenal Medullary Carcinoma virtual support group. My dear friend Carlos Moran died of RMC, and his wife Charissa (also a moderator) is part of my family for life. Charissa connected me with Ritchie Johnson (founder of The Chris “CJ” Johnson Foundation), and she’s put me to work for this incredible community ever since. We’ve been well attended ever since the first meeting, which only proves how valuable peer-to-peer support is.
At our December 8th meeting, our beloved friend Joyce came again. She’s had a difficult few months, and is in Hospice. We do what we do, and how we do it for people like Joyce. She dropped in from her phone, and didn’t have to travel anywhere. We made her laugh (one joke was my own donut story!), encouraged her, and made commitments to keep her lifted in prayer. We record our meetings so people who don’t feel well enough can come that night can watch anytime they are comfortable. I encourage you to watch this particular meeting:
One important thing came to our attention. Joyce has been wanting a burger, and we encouraged her to get one. But unfortunately, the cancer related pain makes it impossible for her to take a trip at the drive-thru. The people around her also didn’t want to bring her one, as they felt like cancer patients aren’t allowed to have them.
That wasn’t good enough for us. Team RMC and Rick sprung into action that night, and we were going to get Ms. Joyce her burger. Through emails, phone calls, friends of friends, and internet searches, a solution emerged. Thanks to DoorDash, WE DID IT, even if we are many miles away! She and her daughter, Nevaeh had delicious bacon cheeseburgers, french fries, and vanilla shakes. Thank you so much, DoorDash and Five Guys!
While this may seem so small, it isn’t. RMC is an under funded, researched, and advocated for cancer due to significant health disparities. Related to Sickle Cell Trait, this community does not get the care they deserve. It was always more than a burger, it was a message that we care, and we stand with you.
Joyce, we love you, support you, and are proud to stand with you. There will be many more DoorDash orders in your future! Thank you Ritchie, The Chris “CJ” Johnson Foundation, AnCan, and Team RMC for this amazing happy ending.
No matter what you are celebrating this month, I am reminded by this quote by Rumi;
The lamps are different, but the light is the same.
Decorating a Christmas tree with lights, or lighting the Menorah still produces what we need more of in this world: light.
And in this winter season where the sun sets earlier, we are drawn to the warm illuminating glow that glistens even stronger in the darkness. It’s the same mesmerizing feeling of the sunrise lighting the dark skies, a reminder that each day is a fresh start. I think that’s why AnCan really fulfills our mission of providing support. We understand that cracks are how the light that shines through us. We have all gone through different things, and want to provide “light” to others.
The beauty of light owes it’s existence to the dark – Brené Brown
I encourage you to see the light in the little things, to always look for the stars when it’s dark, and to provide a little light to others wherever you go.
For information on our peer-led video chat RENAL MEDULLARY CARCINOMA VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
On Saturday, December 5th I had the amazing honor of not only being around amazing people, but I got to do it all proudly representing AnCan as well! I attended the Pushing Past Cancer: Stronger Together Virtual AYA Summit presented by UCLA Health AYA Cancer Program, UC Davis Comprehensive Cancer Center, and Stupid Cancer.
AYA stands for Adolescent and Young Adult in the cancer community, and I hope the terminology will extend in all of medicine. The age range is typically around 15-39, but up to 45 is being more widely accepted now. Our population has a lot of specific issues that pediatric and adult sides of oncology can’t fully reach. Dating, fertility, sexual health, work, college, and mental health are big concerns in our community.
I really enjoyed the conference tackling these issues in a way that’s comfortable for us. My favorite webinar was “Mental Health After Treatment” with Dr. Valentina Ogaryan (Licensed Clinical Psychologist at UCLA Simms Mann Center for Integrative Oncology). She talked about how important support is at any part of a cancer diagnosis. A neat term she used was “the support squad” (which is a great shout out to millennials!), and explained what yours could look like.
One of the closing panels about “What I’d Wish I’d Known…” was just incredible. To hear my peers voice the same feelings I had, and continue to have, was affirming and encouraging. No matter what the diagnosis, we still share similar anxieties and experiences.
An awesome highlight of the day was my team (The Orange Blossoms, because we all had a connection to the color orange, mine is my hair color!) won second place at the trivia after party. Fun fact: a lot of us here at AnCan love trivia games, and I had a lively conversation with Rickand Kim Stroeh about it. An AnCan trivia night would certainly be filled with stiff competition.
Stay tuned, because we will be offering even more support for AYA’s in the upcoming year. We have lots of great things in the works, and I can’t wait to share them with you. We’d love to be a member of your support squad.
Editor’s Pick Good discussions on BiTE treatments and post-RP adjuvant therapy but wait to the very end for a big surprise when we discuss Wisconsin ginseng! (rd)
Topics Discussed
recurrence post-RP; how long to remain on HT w. adjuvant radiation; prospective breast cancer and lupus issues; PSA pattern during chemo regime; discussing BiTE treatments for PCa; stopping LHRH post adjuvant therapy; prepping for SBRT; metastatic patient may be ready for a 2nd opinion; PSMA availability post-FDA approval; CT body scan raises concern; American (Wisconsin) ginseng
Chat Log
Bob McHugh (to Everyone): 6:07 PM: I’m new
Ben Nathanson (to Everyone): 6:55 PM: Jimmy: “How to Restore Urinary Continence After Prostate Cancer Treatment”. Recorded two days ago — toward the end, explanation of several kinds of electric therapy. https://www.youtube.com/watch?v=3aKkRg8-HmY
Ancan – rick (to Everyone): 6:59 PM: https://www.cogentixmedical.com/ who bought uroplasty
Rusty (to Everyone): 7:02 PM: Having a mamogram on Friday for breast cancer and ust diagnosed with Lupus.
The Active Surveillance path in Prostate Cancer comes with a lot of questions, and that’s why we are always so glad to offer support and resources. On December 2nd, in our AS prostate cancer virtual support group, we had the utmost pleasure of hosting Dr. Judd W. Moul, MD, FACS (Professor of Surgery at Duke University), who happens to be one of the top experts in the field of Prostate Cancer!
He shares a wonderful dialogue about AS, and answers many of our attendee’s questions. Our own moderators learned something new. Thank you so much, Dr. Moul!
Watch this informative special presentation here:
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
