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

FDA Approves First PSMA-Targeted PET Scan

Today’s announcement from the FDA has been long awaited by the prostate cancer community.  We expect several more PSMA-PET approvals to follow in the coming weeks.

This approval is based on studies led by Prostate Cancer Foundation-funded investigators Dr. Thomas Hope at UCSF and Dr. Czernin and Dr. Calais at UCLA.  The team conducted a series of clinical trials which demonstrated the improved sensitivity of 68Ga-PSMA-11 PET for detecting sites of recurrent prostate cancer in men with rising PSA levels after surgery or radiation therapy, and for detecting sites of metastases in men newly diagnosed with high-risk prostate cancer.

Compared to the scans currently used for prostate cancer detection, such as CT, bone scans, and MRI, PSMA PET is more sensitive and can detect much smaller prostate cancer metastases. Several of AnCan’s members have already received PSMA PET scans in clinical trials and we have personally experienced negative scans with the old technology and then positive scans with the PSMA agents and it has changed our treatment decisions.  PSMA PET can now be used for initial and subsequent management decisions in patients with prostate cancer, in order to determine if and where they have metastases.

At present, 68Ga-PSMA-11 PET scanning will be available at only UCLA and UCSF. Radiopharmaceutical companies will likely apply for expedited FDA approval to make 68Ga-PSMA-11 “kits” so that this technique will eventually be available to more patients throughout the US.

No serious adverse reactions were attributed to Ga 68 PSMA-11. There is a risk for misdiagnosis because Ga 68 PSMA-11 binding may occur in other types of cancer as well as certain non-malignant processes which may lead to image interpretation errors. There are radiation risks because Ga 68 PSMA-11 contributes to a patient’s overall long-term cumulative radiation exposure, which is associated with an increased risk for cancer, however small.

To read the full stories of this approval, please click on these links from the FDA and from the Prostate Cancer Foundation (PCF):

http://tiny.cc/FDA-Summary

http://tiny.cc/PCF-Summary

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

Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Nov 24, 2020

 

 

Happy Thanksgiving to all our Audience ….. may it be healthy, safe and still delicious – don’t forget the exercise! ….. from your AnCan PCa Moderators 

 

Editor’s Choice:  We discuss a rare form of prostate cancer this week – ductal adenocarcinoma!

Topics Discussed

Recurrent ductal adenocarcinoma PCa; PSMA scans; newbie needs help dealing with hot flashes… and maybe doctors?; glucocorticoid + enz trial not working; qualifying for Axumin scan insurance coverage; chemo considerations; what ‘morphed’ PCa means; calcium and parathyroid issues; lupus and breast cancer considerations; dealing mentally with long term treatment; measuring T level rasies an issue; PARP-I failing for BRCA man

Chat Log

Jim Ward (to Everyone): 4:31 PM: Could someone please type the name of this rare form of PC? Thanks!

AnCan – rick (to Everyone): 4:31 PM: ductal adenocarcinoma

Jim Ward (to Everyone): 4:32 PM: Thx!

AnCan Barniskis Room (to Everyone): 4:44 PM: 18F DCFPyL PSMA scan

Jake Hannam (to Everyone): 4:48 PM: 1 and 15 Dec – Tuesday meetings due to calendar

Jake Hannam (to Everyone): 4:56 PM: https://ancan.org/

Mark Perloe (to Everyone): 4:57 PM: venlafaxine

John I (to Everyone): 5:04 PM: Nutrition & Prostate Cancer plenary https://youtu.be/uwMZinYekGU Nutrition for Active Surveillance https://youtu.be/A7b3StqcXro Mark Perloe (to Everyone): 5:11 PM: Fred Hutchins Cancer Center in Seattle has a great playlist of exercise for prostate CA.

Mark Perloe (to Everyone): 5:18 PM: Dennis, Have you discussed consideration of AR-V7? If the mets are bone mets, are they discussing a Lu177 consideration?

Frank Fabish (to Everyone): 5:23 PM: Testosterone today 15. last month 298. Had 2nd firmagon injection today. Doc wants to continue monthly firmagon. Wants to start chemo evry 3 weeks for 6 treatments docetaxel because of metastatic PC to lungs. Then to follow up with apalutimide along with firmagon injections. PSA .78. Last month 2,82

AnCan Barniskis Room (to Everyone): 5:25 PM: Weill Cornell and Tulane are running LU177 trials for metastatic castrate resistant PCa. Also UCSF is recruiting for LU177 and Pembrolizumab trial, as well asanother one for “CTT1403” for metastic castrate resistant PCa

Mark Perloe (to Everyone): 5:29 PM: Ask your MD request a peer to peer consultation. I have always been able to get necessary testing done physician to physician under appeal. Ken do any DCF18 PYL or PSMA Ga-68 scan studies should be considered? These are better scans than Axumin.

AnCan Barniskis Room (to Everyone): 5:30 PM: Also Pheonix Molecular Imaging and U. of AZ in Tucson are recruiting for LU177 trials.

Mark Perloe (to Everyone): 5:31 PM: There is a scan study at Emory for PSMA rh. not sure what the control group is for that study.

Dennis McGuire (to Everyone): 5:32 PM: is it the LU177 – 617 or LU177 – R2 ?

Jim Ward (to Everyone): 5:53 PM: Is there a thought that the lupus is related to RT and/or ADT?

Rusty (to Everyone): 5:56 PM: Gotta run, I have a backagammon challege with my wife. I will win.

Herb Geller (to Everyone): 6:00 PM: I gotta go as well. See you all next week.

Mark Perloe (to Everyone): 6:01 PM: I thought Tony had PROSTRATE cancer.

David Muslin (Private): 6:05 PM: BTW, my “T “level is staying level at 10. She checks it everytime I do blood work.

Mark Perloe (to Everyone): 6:07 PM: I was just dropped to abi 2 pills per day. Abi primarily drops DHEA and DHEAS from androstenedione.from the adrenal. My T on both ABI and triptorelin is undetectable. Some people get their shots monthly, but it should be every 4 weeks. If you go longer, you may have higher level of T.

James Barnes (to Everyone): 6:11 PM: Happy Thanksgiving Everybody!

Jim Ward (to Everyone): 6:12 PM: Gotta hop off the call, folks. Happy Thanksgiving everyone!

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/