Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 12, 2021
Editor’s ChoiceBiTE discussion …… and hear from a man with metastatic disease that is now in remission with no hormne therapy required. (rd)
Topics Discussed
Advanced disease & ‘bispecific’ alternatives; lupus hits one of our men post ADT; handling depression; starting chemotherapy with lung nodules; viability of spot RT vs systemic Tx; dealing with long-term and intermittent ADT mentally; MX disease stabilizes with no further HT; managing your own GU med onc
AnCan Barniskis Room (to Everyone): 4:20 PM: Apologies for being late everyone
Bryce Olson (to Everyone): 4:23 PM: what is the pros/cons of BITE vs. Lu177. Why BITE over that. BITE just feels less direct, and you’ve got to get the CD3 cells into the tumor and tumor microenvironment could stop that from happening in BITE without some TKI that focuses on myeloid cells
Bryce Olson (to Everyone): 4:23 PM: I wanted to ask directly but my mic isn’t working
Herb Geller (to Everyone): 4:31 PM: The radiodirective therapies are more advanced with more data to support them. All the BiTEs are Phase 1, and have many more side effects. You are coorect that BiTEs are less direct, as they depend upon activating T cells and all the current ones are dealing with issues of T cell depletion.
John Ivory (to Everyone): 4:39 PM: Right, Peter. It’s unfortunate that seeing a psychiatrist is seen as controversial. I’ve been to a number of them.
Bryce Olson (to Everyone): 4:47 PM: Really sorry Rusty. I’ve been there before and I know how shitty the depression can be.
Rusty (to Everyone): 4:57 PM: I hurt and tired. I need to go bed.
AnCan Barniskis Room (to Rusty): 4:58 PM: From David Muslin to Rusty- feel better
Herb Geller (to Everyone): 5:42 PM: He seems fine, but the real issue is the approach he takes — why 10 sessions? Is this SBRT? But I think you may need more systemic approaches.
AnCan Barniskis Room (to Organizer(s) Only): 5:46 PM: Is he still on ADT?
George Southiere MD (to Everyone): 6:02 PM: Thanks to everyone for being here !
Pat Martin (to Everyone): 6:03 PM: Dxed with Gl 10 all 12 cores + with up to 80% cancer. In 2014. Pat Martin (to Everyone): 6:06 PM: Rp, ADT for 18 mos, Vacay, Rad with ADT, Lupron Zytiga for another 21/2 years, Vacay, PSA has come back from less than 0.03 to 0.59 in 6 months. last 3 months show a PSADT of 2.1 mo. Washington state. Am at Fred Hutchinson
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!):
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?
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
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.
