Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Dec 15 2020

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.

AnCan – rick (to Everyone): 4:43 PM: rd@ancan.org 415 505 0924

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

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Dec 7 2020

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Dec 7 2020

 

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.

Ancan – Jake Hannam (to Everyone): 7:31 PM: https://www.urotoday.com/video-lectures/esmo-2020/video/1937-discussing-the-efficacy-and-safety-from-results-of-the-dose-escalation-arm-of-amg-160-a-bispecific-t-cell-engager-bite-immune-therapy-targeting-psma-for-metastatic-castration-resistant-prostate-cancer-ben-tran-oliver-sartor-and-neal-shore.html

Regina Hoover (Private): 7:43 PM: please send info on exercise controlling side effects and possibly the cancer

Ancan – rick (to Regina Hoover): 7:44 PM: Regina – please go to www.medafit,com and look under Research. Tell me if that works

Regina Hoover (Private): 7:46 PM: thank you. will do Working on getting Russ to do more exercise

Dell Jensen (to Everyone): 7:49 PM: I also recommend stretching. I added that this time to my excercise routine and this has made big improvement.

Dell Jensen (to Everyone): 7:55 PM: It might be closer to go to Dr Mogans; Chicago vs St Paul

Dell Jensen (to Everyone): 8:13 PM: bye everyone

Peter Monaco (to Everyone): 8:13 PM: Me too. Have a good evening!

ALFRED LATIMER (Private): 8:18 PM: rhPSMA-7.318F is the agent in the trial at Emory

ALFRED LATIMER (to Everyone): 8:19 PM: rhPSMA-7.318F is the agent in the trial at Emory

Herb Geller (to Everyone): 8:19 PM: https://telixpharma.com/pipeline/tlx591/

Ancan – rick (to Everyone): 8:26 PM: “scanxiety”

Ancan – rick (to Everyone): 8:28 PM: American Wisconsin Ginseng

John I (to Everyone): 8:33 PM: Fantastic job. Maybe a few hiccups, but overall it’s a wonderful, life-changing group.

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Dec 7 2020

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Dec 1 2020

 

NB  Our regular 4th Tuesday Meeting has been moved to the 3rd Tuesday, Dec 15 at 6 pm Eastern just for this month owing to a calendar quirk.

Editor’s Pick  The big PCa news this week is the breakthrough FDA approval that will surely herald wider approvals in coming months. We discuss in detail upfront! rd

Topics Discussed

68Ga PSMA 11 FDA approval; recurrence w. high PSA but no evidence; PARP-I fails – what next?; cancer and inflammation; zoledronic acid vs denosumab & Xgeva v Prolia; cabazitaxel vs docetaxel; darolutamide Nubeqa; GU med onc in NW Florida; Fighting hot flashes; switching up when Mx disease is stable

Chat Log

Frank Fabish (to Everyone): 4:29 PM: Can anyone compare chemo docetaxel vs cabazitaxel

AnCan – Rick (to Joe): 4:36 PM: WELCOME Joe …. you got a haircut!!!

Joe (Private): 4:42 PM: yea I did! Building and ice boat http://www.isabella-iceboat.com/9902255.jpg  huge group!

alan moskowitz (to Everyone): 4:50 PM: dr Oh – 1-212-824-8855 direct to his office. https://www.mountsinai.org/profiles/william-oh

Len Sierra (to Everyone): 4:51 PM: Dr. William Oh: 212-659-5412

Tracy Saville (to Everyone): 4:55 PM: I like hearing comments re: longevity and health status. It really puts things in perspective for those of us that were detected stage 4. THX for that.

Joe (to Everyone): 4:56 PM: great to see you all…sorry to be late and to have to bug out early…come to WY and we’ll sail the ice boat https://www.google.com/search?client=firefox-b-1-d&q=isabella+classic+ice+boat

Peter Haake (to Everyone): 4:56 PM: Thanks for the info..

Jim Ward (to Everyone): 4:58 PM: This may or may not related to PC, but has anyone in this group had a symptomatic inguinal hernia that needed surgery? If so, perhaps respond with a private note for dicussion off-line. Thank you.

David Muslin (to Everyone): 5:11 PM: Tracey, I could not agree more. That’s what Ancan all about for me. We are not alone…..

John I (to Everyone): 5:11 PM: I didn’t have any pain but my doc recommended surgery so that it didn’t worsen & cause complications. I had the laparascopic procedure with the mesh and I think it was in ~1998 and I haven’t had a problem with it. It would have been a simple outpatient procedure, but my lung collapsed during surgery, so I needed to stay overnight.

Carl Forman (Private): 5:17 PM: Need to sign off. See you next time. Will ask Oncologist again about abi. Thanks.

Peter Haake (to Everyone): 5:17 PM: That’s interesting, I had hernia surgery 2008?. Never made that connection

John I (to Everyone): 5:26 PM: Gotta run. Thanks, Rick & everyone, for letting me go early. See you next time.

Herb Geller (to Everyone): 5:29 PM: NUBEQA™ (darolutamide) – Official Physician Site

Lou (to Everyone): 5:33 PM: btw, I did the market survey interview you spoke about last month. It was easy and took 45 minutes for a pay of $100. They messed up first appointment so they paid me for that session also.

Len Sierra (to Everyone): 5:33 PM: Dr. Elizabeth Guancial, Sarasota Downtown 1970 Golf Street Sarasota, Florida 34236 SCHEDULE AN APPOINTMENT:Call: (941) 957-1000

Tracy Saville (to Everyone): 5:36 PM: I was successful with the $500 Cancer and Careers grant. Anyone else?

Ken A (to Everyone): 5:36 PM: congrats Tracy….. I also!

Tracy Saville (to Everyone): 5:46 PM: i have to drop off, mac battery is nil. thx, everyone. great meeting.

Peter Kafka (Private): 5:52 PM: Dr. Jamie Abraham at Cleveland Clinic is not a genitourinary med onc. His specialty is hemotology and breast cancer. I am sure there is someone better at Cleveland

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Dec 7 2020

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Nov 16, 2020

Editor’s Choice

Should you monitor your testosterone level ….. ? The group consider and discuss. (Tx for all b-day wishes! rd)

Topics Discussed

GU med onc places Mx man on LHRH alone???; Intermittent Hormone Therapy considerations; monitoring Testosterone levels; using different labs; trigger finger and HT; Bipolar Androgen Therapy; finding 2nd opinions remotely; when does a symptom warrant reporting; PSMA scanning tests; dealing with Brain Fog

Chat Log

Herb Geller (to Everyone): 6:15 PM: But yes, ACTH might be a better indicator.

Mark Perloe (to Everyone): 6:20 PM: I’m on Zytiga and prednisone. Dr. Turner drew a cortisol level and I got a call that my cortisone was low, but prednisone minimally affects blood cortisol level. I would think that ACTH would be a better marker. BP is normal, and I’m feeling ok. We dropped Zytiga to 500 mg/day with food. Turns out a recent study suggested lower DHEAS from adrenal with 500 vs 1000mg the standard dose. I appreciated cutting the cost in half as well.

John I (to Everyone): 6:29 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/amir-mortazavi

Herb Geller (to Everyone): 6:39 PM: abiraterone – trade name ZYTIGA

Jake Hannam (to Everyone): 6:39 PM: Zytiga

Mark Perloe (to Everyone): 6:42 PM: Also on Zytiga+prednisone.

Frank Fabish (to Everyone): 6:52 PM: thank you all

AnCan – rick (to Frank Fabish): 6:54 PM: Pleasure Frank ….. keep coming back

Frank Fabish (to Everyone): 6:55 PM: intend to. i’m pleased with this first meeting

John I (to Everyone): 7:20 PM: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/

Herb Geller (to Everyone): 7:21 PM: https://cdmrp.army.mil/pcrp/research_highlights/20denmeade_highlight.aspx

Ken A (to Everyone): 7:24 PM: MDA stated BAT is not a good idea and they have had no success.

Mark Perloe (to Everyone): 7:48 PM: PSMA-rh study at Emory

John I (to Everyone): 7:57 PM: Here’s the org I just mentioned: http://dbsaalliance.org/

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Dec 7 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Nov 2, 2020

Editor’s Choice: While there’s lots of talk about PSMA scans this week, the discussion around tolerating abiraterone v. enzalutamide is my pick! (rd)

Topics Discussed

Denovo Mx diagnosis has been through most treatment options – what next?; SBRT for recurrence – Part 1 almost over; looking at trials for advanced Mx disease; abi better tolerated than enz – but what about others?; Spot RT slows doubling time – is that enough without ADT?; PSA-progression recurrence shows nothing on PSMA scan – what treatment?; man with recurrence finds an invitation-only PSMA scan; long time Mx survivor seeks PSMA scan; denovo Mx man received less than standard care and now seeks GU med onc

Chat Log

Len Sierra (to Everyone): 6:33 PM: BiTe = Bispecific T-cell Engager

Len Sierra (to Everyone): 6:35 PM: Talabostat is an experimental drug that initiates an inflammatory response in the tumor microenvironment, converting cold tumors to hot tumors and thereby making them better targets for checkpoint inhibitors, like pembro or nivolumab.

Jake Hannam (to Everyone): 6:37 PM: Why give up on enzi after just one month?

Jake Hannam (to Everyone): 6:41 PM: AR V7

Jake Hannam (to Everyone): 6:46 PM: rd@ancan.org

Mark (to Everyone): 7:04 PM: Isn’t Blue Earth for Axumin and rh-PSMA

Mark (to Everyone): 7:15 PM: Abi blocks steroid production. Won’t levels still be zero with monotherapy?

Len Sierra (to Everyone): 7:17 PM: Mark, there was a trial showing that Abi alone was just as effective in suppressing T-levels as Abi + Lupron.

Herb Geller (to Everyone): 7:27 PM: Concomitant intake of abiraterone acetate and food to increase pharmacokinetic exposure: real life data from a therapeutic drug monitoring programme By:Groenland, SL (Groenland, Stefanie L.)[ 1 ] ; van Nuland, M (van Nuland, Merel)[ 2 ] ; Bergman, AM (Bergman, Andries M.)[ 3 ] ; de Feijter, JM (de Feijter, Jeantine M.)[ 3 ] ; Dezentje, VO (Dezentje, Vincent O.)[ 3 ] ; Rosing, H (Rosing, Hilde)[ 2 ] ; Beijnen, JH (Beijnen, Jos H.)[ 2,4 ] ; Huitema, ADR (Huitema, Alwin D. R.)[ 2,5 ] ; Steeghs, N (Steeghs, Neeltje)[ 1 ] EUROPEAN JOURNAL OF CANCER Volume: 130 Pages: 32-38 DOI: 10.1016/j.ejca.2020.02.012 Published: MAY 2020

Mark (to Organizer(s) Only): 7:34 PM: The abstract did not show a lower dose, just ok for light snack.

Len Sierra (to Everyone): 7:41 PM: From Allen Edel: About 90-95% of metastatic men express at least some PSMA on their prostate cancer cells. Less aggressive PCa produces much less PSMA.

Ancan – rick : 7:42 PM: color.com

Mark (to Everyone): 8:07 PM: This is the low dose abiraterone article: J Clin Oncol . 2018 May 10;36(14):1389-1395. doi: 10.1200/JCO.2017.76.4381.