Teamwork makes dreamwork here at AnCan, and we were thrilled to team up with PatientPower for the webinar series “Your Prostate Cancer Questions Answered“. Video and transcript are available in the links below.
In 2018, patients with nonmetastatic castration-resistant prostate cancer (nmCRPC) were watching and waiting. Two years later there are three novel androgen receptor inhibitors available. But more options mean more questions for doctors and for patients. In this first installment of our prostate cancer Answers Now series, we’ll explore these emerging questions around who should use what when, and why. We will also zoom out to give an overview of the disease and current treatment options. This event will be hosted by AnCan Founder Rick Davis and Len Sierra, AnCan Prostate Cancer Moderator. Dr. Eleni Efstathiou from MD Anderson Cancer Center in Texas and Dr. Tom Beer, Chair of Prostate Cancer Research at OSHU.
In this edition of our prostate cancer Answers Now series, we’ll learn about the latest in testing and imaging for prostate cancer with hosts & AnCan Prostate Cancer Moderators, Len Sierra and Peter Kafka. They will be joined by Scott Tagawa, MD, Professor of Medicine and Urology at NewYork-Presbyterian-Weill Cornell Medical Center in New York City and David VanderWeele, MD, PhD, Assistant Professor of Medicine in the Division of Hematology and Oncology at Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Feinberg School of Medicine. We invite your questions as we cover what PSMA PET and Next Generation Imaging can mean for patients at different points in their prostate cancer journey.
Talking honestly about one’s medical realities in the doctor’s office takes practice, but it is a crucial step to take. Tune in as experts discuss how transparent doctor-patient relationships can improve prostate cancer outcomes.
Hosted by AnCan Founder Rick Davis and Peter Kafka, AnCan Prostate Cancer Moderator. They will speak with Dr. Atish Choudhury, Co-Director of the Prostate Cancer Center at Dana-Farber Cancer Center about the importance of open communication between patients and physicians. What are the best treatment options? What side effects may I experience? What will my quality of life be? Expect all of these answers and more.
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording Jan 4, 2021
Happy New Year friends … may it be safe and healthy. Welcome to our first group of 2021 along with a few new organizational rules that you’ll hear about.
Editors PickThe Group settles a new man freaked by his diagnosis.(rd)
Topics Discussed
New Canadian Gent wrestles with hot flashes and HT side effects; Optum Rx changes its formulary on a specialty drug; considering different LHRH drugs; back to chemo when low dose abi stops working; denovo MxPCa Dx challenges yet another man mentally; monotherapy darolutamide and abiraterone; Dr. Efstathiou goes AWOL; Prostate Oncology invokes concierge policy; seeing Dr. Singh at Mayo for the first time; always give your doc a list of questions; what to expect when starting chemo
Chat Log Jake Hannam (to Everyone): 6:02 PM:
Our moderators will rotate the meeting chair throughout the month – we are still working on the schedule, and will confirm next week. The meeting hosts will be Rick Davis, Len Sierra, Peter Kafka and Herb Geller. All of us will still do our best to attend evey meeting.
We will use our AnCan blog more frequently to inform you of key developments in the PCa world, rather than taking time at the beginning of meetings. So please sign up to our Blog in the right sidebar to stay informed https://ancan.org/blog/ .
Meetings will start promptly no later than 10 minutes after the appointed start time – 6 pm or 8 pm Eastern. Those arriving later than ‘Ten After’ are still most welcome BUT will be lower priority if they need time. Latecomers will be polled only after all those arriving on time have beeen addressed. Again, LATE means 10 minutes after the start time.
The Moderators are creating a list of questions to help structure the time we dedicate to new men at the start of each meeting. We are limiting new men to 3 per meeting; additonal men will be deferrd to the following week.
Mark Perloe (to Everyone): 6:10 PM: If you are not speaking, please mute your microphone.
Carl Forman (to Everyone): 6:21 PM: Curious if anyone has recently received a letter from their medicare drug plan informing you that your med will no longer be covered in 2021, and you will be paying full price?
Jake Hannam (to Everyone): 6:23 PM: I sure hope not! Medicare Part D?
Frank Fabish (to Everyone): 6:25 PM: I get my treatment through the VA due to Agent Orange. So no limitations.
Carl Forman (to Everyone): 6:25 PM: Yes, Part D coverage. My Olaparib, which has not cost me anything out of pocket, will now possibly cost me $13000-16000 per month!
John A (to Everyone): 6:34 PM: Venlafaxine; Depot Provera
Mark Perloe (to Everyone): 6:41 PM: Please check out GoodRx Gold. I found that I got my meds at a price much less than Part D. Abiraterone was going to be $800 on Part D and $300 on GoodRx Gold. Unfortunately, I now go to three different pharmacies to get my meds.
Len Sierra (to Everyone): 6:42 PM: cyproterone
Peter Kafka (to Everyone): 6:45 PM: I suspect that this year we will see lots of changes in the medical insurance world due to the pandemic and challenges that hospitals are facing. Just my intuition.
Mark Perloe (to Everyone): 6:48 PM: Zejula may be the cheapest. None of the PARP inhibitors are listed in GoodRx.
Len Sierra (to Everyone): 6:51 PM: Talazoparib trade name is Talzenna
Peter Kafka (to Everyone): 6:52 PM: If this is true about Olaparib it will be a problem for women dealing with BRCA2 & 1 mutations as well as some of us guys. I suspect that Women will object
Len Sierra (to Everyone): 6:52 PM: Zejula trade name is niraparib, the generic name.
Mark Perloe (to Everyone): 7:01 PM: For me, 500 abiraterone with food is great. T is undetectable. It actually appeared to be a higher level with the lower dose with food.
Mark Perloe (to Everyone): 7:07 PM: I think if the T is undetectable, then dosing doesn’t really matter. Is the T undetectable? If so, then I doubt increasing will help. I thought the Prednisone vs Dex is about blood pressure to protect against suppression of cortisol.
John Ivory (to Everyone): 7:12 PM: It looks like Abbvie expected to start shipping Lupron again last month (see Lupron Depot 3 month 2nd line in table): https://bit.ly/393xN4L Looks like Takeda (Japanese pharma co) produces Lupron & Takeda claims they had a mfg problem: https://bit.ly/3rVBMZS
Len Sierra (to Everyone): 7:12 PM: Johann de Bono is an author on this paper in BJC: Tumour responses following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264443/
Mark Perloe (to Everyone): 7:13 PM: This randomized, Open Label Phase 2 study published in JAMA Oncology compared various dosing schedules of prednisone and one for dexamethasone which are used with Zytiga (abiraterone acetate). As you may know, some form of steroid is necessary for use with Zytiga to compensate for its inhibition of natural cortisol production. If not compensated, patients on Zytiga would suffer from a metabolic syndrome known as mineralocorticoid excess (hyperaldosteronism) resulting in hypertension and hypokalemia (low potassium) which could lead to metabolic alkalosis, tetany (muscle cramping) and irregular heart rhythms.
The various prednisone regimens included 5mg once per day, 2.5mg twice per day, and 5mg twice per day. Dexamethasone was given as 0.5mg once per day. For each of these subgroups, the following percentage of patients had no mineralocorticoid excess (a good thing!):
As they say, all good things must come to an end. While our 2020 Webinar Series “”Active Surveillance and Beyond” is finished, our support groups are still going strong! And if you’re feeling a little sentimental like we are, you can always rewatch the first, second, and third webinars.
Pathologist Dr. Jonathan Epstein (Director of Surgical Pathology at Johns Hopkins Institutions in Baltimore, Maryland) explains why he opposes reclassifying Gleason 6 as a noncancer, and why he thinks a second opinion should be sought on all pathologies, not just prostate cancer.
We want to graciously thank Dr. Epstein for answering our attendee’s questions!
Watch this fascinating and incredible webinar here:
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
