Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Oct 28, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Oct 28, 2020

Editor’s Pick  The estrogen discussion is a rare topic in this forum; and, we finally pick apart IHT for one of our gents. (rd)

Topics Discussed

Estrogen and prostate cancer; 2018 denovo metastatic PCa diagnosis treated with Lupron alone; issues to raise re. Intermittent Hormone Therapy; docetaxel and HT may no longer be working; are lesions in the prostate bed considered oligometastatic disease?; Ph 1 trial experience; Jake appointed our Official Muter!; Eary success with ViewRay; Eligard vs Lupron: even after years, PSA wandering in a anarrow range well below 1.0′ Provenge.

Chat Log

AnCan – rick (to Everyone): 3:17 PM: Direct to our AnCan blog https://ancan.org/blog/

Mark Perloe (to Everyone): 3:23 PM: Does anyone.know if abiraterone has an effect on cholesterol?

Len Sierra (to Everyone): 3:25 PM: Abiraterone contributes to metabolic syndrome which raises cholesterol.

Larry Fish (to Everyone): 3:33 PM: how long for PSA fo go to 1.7 from .02 any idea of doubling time

Mark Perloe (to Everyone): 3:40 PM: Without treatment of the prostate with surgery or radiation, I find it hard to see it really go that low by just Lupron. I also wonder what tracer was used for PET scan.

Peter Kafka (Private): 3:40 PM: Has Tony had a biopsy? He did not say. Does he have a GL score? All he said was Stage 4

AnCan – rick (to Everyone): 3:41 PM: Mark ….. lupron can drive and keep it that low. We used to see that frequently Mark Perloe (to Everyone): 3:42 PM: Would he possibly benefit from radiation of prostate hoping for the abscopal effect. Would abiraterone be more appropriate than a receptor blocker?

Joel Blanchette (to Everyone): 3:43 PM: Dr. Mohammad Rahman, MD is a Medical Oncology Specialist in Steubenville, OH and has over 35 years of experience in the medical field. He graduated from Dow Med Coll medical school in 1985. He is affiliated with medical facilities East Liverpool City Hospital and Trinity Medical Center East. He is accepting new patients. Be sure to call ahead with Dr. Rahman to book an appointment.

Mark Perloe (to Everyone): 3:46 PM: FDA approved a urine liquid biopsy for prostate CA miR Sentinnel PCC4 Assay. pretty good sensitivity 94% and specificity 92%. It is used to predict presence of CA and asses the risk of high-grade tumors. Not sure I’ve seen any liquid biopsies that can be used to follow or monitor treatment.

Larry Fish (to Everyone): 3:47 PM: He is a Hemotologist

John I (to Everyone): 3:48 PM: Looks like Dr. Rahman is a generalist medical oncologist –many things conditions treated, but not PCa Ovarian Cancer Malignant Neoplasm of Female Breast, Melanoma, Non-Hodgkin’s Lymphoma, Lung Cancer, Bladder Cancer, Gastric Cancer, Hodgkin’s Lymphoma, Malignant Neoplasm of Colon, Testicular Cancer, Pancreatic Cancer. Leukemia, Rectal, Abdomen, Small Intestines, or Colon Cancer, Multiple Myeloma

John I (to Everyone): 3:48 PM: https://wb.md/3mpPxN1

Tracy Saville (to Everyone): 3:54 PM: I have to drop off, everything going well here. see you guys next week.

John I (to Everyone): 4:16 PM: I hadn’t seen the UCSF pamphlet on hormone therapy before. For anyone else who hasn’t, it’s here: https://bit.ly/2HDyhVl

Jake Hannam (to Everyone): 4:21 PM: https://ancan.org/ancan-patient-power-partner-on-advanced-prostate-cancer-webinar-series/?fbclid=IwAR1p8lai0NZ819QQxWXUMTCaYK2fyGreiT4HuLd6O5F5F4u-LZbFji5TIQE

AnCan – rick (to Everyone): 4:27 PM: https://patientpower.info/prostate-cancer/series/your-prostate-cancer-questions-answered

Jake Hannam (to Everyone): 4:37 PM: https://www.cancerabcs.org/online-support/

AnCan – rick (to Everyone): 4:38 PM: If you are failing the chemo, then a couple of strategies occur to me, Ken. 1. Rechallenge with a second line anti-androgen – either abi or a blocker 2. Switch to a different chemo combination like cabazitaxel 3. Sequence again and see if there is anything new to treat. 4. Consider a bi-specific trial … viz AmGen, Xencor, Regeneron BiTE (AMG 509) in Greensville …… ClinicalTrials.gov Identifier: NCT04221542 Xencor XmAb20717 in Charlottesville ClinicalTrials.gov Identifier: NCT03517488

Jake Hannam (to Everyone): 4:43 PM: https://prostatecancerinfolink.net/2020/10/27/sbrt-vs-ebrt-in-treatment-of-painful-spine-metastases/

Herb Geller (to Everyone): 5:01 PM: Sorry. Gotta eat dinner. See you Monday.

James Barnes (to Everyone): 5:03 PM: Good night guys! Great meeting!

Jim Ward (to Everyone): 5:04 PM: Good night, gents. Thanks for the input re intermittent ADT! The cancer center where I’m receiving Lupron in Tallahassee, FL only had a 1-month Lupron shot availble for my last shot. So, it looks like I’m going with monthly shots for now.

John I (to Everyone): 5:11 PM: Gotta run–wishing everyone a great week!

James Doyle (to Everyone): 5:12 PM: Thanks for your input and be safe. :-(])

AnCan & Patient Power partner for Prostate Cancer Webinar Series

AnCan & Patient Power partner for Prostate Cancer Webinar Series

AnCan & Patient Power partner for Prostate Cancer Webinar Series

                                    AnCAn logo with tag line

Answering your Prostate Cancer Questions

To watch these seminars, folow these links:

“Prostate Cancer and Making Sense of nmCRPC Options” – Rick & Len speak with Drs. Eleni Efstathiou and Tom Beer

“PSA Test & Imaging for Prostate Cancer Patients”Len & Peter Speak with Drs. Scott Tagawa and David VanderWeele

“How to Manage Side Effects & Reduce Suffering”Peter and Rick speak with Dr. Atush Choudhury –

Three of AnCan’s senior and most knowlegeable prostate cancer moderators, Len Sierra, Peter Kafka and Rick Davis, team up to host and interview five expert and renown genitourinary medical oncologists in three separate webinars during October and November. Len, Peter & Rick along with Jake Hannam moderate AnCan’s 4 times per month High Risk/Recurrent/Advanced Prostate Cancer video chat virtual support group.

Our hosts will be interviewing:

Eleni Efstathiou MD, PhD
Associate Professor, Department of Genitourinary
Medical Oncology, Division of Cancer Medicine,
The University of Texas MD Anderson Cancer Center

Tomasz Beer MD, FACP
Deputy Director, OHSU Knight Cancer Institute

Scott T. Tagawa MD, MS, FACP
Professor of Medicine and Urology, Weill Cornell
Medicine; Physician, NewYork-Presbyterian -Weill Cornell Medical Center

David VanderWeele MD, PhD
Assistant Professor of Medicine, Northwestern
University Feinberg School of Medicine; Medical
Oncologist, Lurie Cancer Center at Northwestern Memorial Hospital

Atish D. Choudhury MD, PhD
Co-Director of the Prostate Cancer Center,
Dana-Farber Cancer Center

For dates, topics and live registration links to each webinar, click Patient Power AnCan CRPC Series

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Oct 28, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Oct 19, 2020

Editor’s Pick: This week’s group is dominated by U-60 men diagnosed denovo metastatic – we speak to FIVE (5)!!!!! USPSTF HEAR THAT!!! A good discussion on abi side effects … AND A HYPERACTIVE CHAT LOG!!

Topics Discussed

Misdiagnosed 1st time leads to denovo Mx Dx for U-60 man 2nd time; post-RP spread managed for 10 yrs w/o HT; 25+ yrs living with G9 advanced PCa!; Keytruda trial for MSI stable man post-olaparib; Rusty’s 1st Football game post-HT!; abiraterone side effects; blood pressure issues from 2nd lin anti-androgens; glucocosticorteroid + enz trial; enz + LHRH for another U-60 denovo Mx man; yet another U-60 denovo Mx man starts RT; enz preferred with heart disease; cancer or sarcoidosis?

Chat Log

scott (to Everyone): 5:03 PM: Sylvester how are you doing?

David Muslin (to Everyone): 5:21 PM: Nicklas Robert Pfanzelter, M.D. (89 ratings) NorthShore Medical Group 847.503.1000 Conditions Adrenal Cancer, Basal Cell Cancer (BCC), Bladder Cancer, Genitourinary Cancer, Kidney Cancer, Lung Cancer, Melanoma, Merkel Cell Cancer, Prostate Cancer, Testicular Cancer, Transitional Cell Carcinoma, Urinary Tract Cancer Procedures Chemotherapy

John I (to Everyone): 5:26 PM: genitourinary

Len Sierra (to Everyone): 5:26 PM: GU = Genitourinary Oncologist

John I (to Everyone): 5:26 PM: (GU) medical oncologist (GU Med Onc)

Joel Blanchette (to Everyone): 5:27 PM: He is close to Alicia Morgans, GU Medical Oncologist

Mark Perloe (to Everyone): 5:27 PM: Alicia is great.

AnCan – rick (to Everyone): 5:28 PM: We are getting there gents …..

John I (to Everyone): 5:28 PM: She’s my doc. very good doc, good at answering questions, taking her time

Mark Perloe (to Everyone): 5:28 PM: I’d also consider OncocyteDX liquid biopsy as up to 50% of the mutations are limited to the tumor and are not inherited.

Jerry Pelfrey (to Everyone): 5:28 PM: do not forget Proton pencil beam as a choice

Ken A (Private): 5:29 PM: advise please on under 60 group

Len Sierra (to Everyone): 5:29 PM: Lynch Syndrome

Mark Perloe (to Everyone): 5:30 PM: SBRT with ViewRay, a device which marries MRI and Linear Accelerator can get treatment for five times. Visit ViewRay.com

Ken Doyle (to Everyone): 5:31 PM: Ken Doyle Info. Age 75, mPC after prostate removal in 2010

Herb Geller (to Everyone): 5:34 PM: BRCA1 or BRCA2

Jake Hannam (to Everyone): 5:34 PM: BRCA mutation

John I (to Everyone): 5:36 PM: I also had a good experience with Russell Szmulewitz at UChicago too–had to change because of insurance network changes

Carl Forman (to Everyone): 5:41 PM: In case I don’t have a chance to speak tonite, I wanted to throw out to the group if anyone has had experience with Keytruda, which has been dicussed by my Oncologist as a clinical trial treatment option for me.

AnCan – rick (to Everyone): 5:41 PM: Big subject Carl – should be discussed.

Ken A (to Everyone): 5:42 PM: Carl – Paul has advise me that it was in my future…

John I (to Everyone): 5:45 PM: active surveillance

Jake Hannam (to Everyone): 5:45 PM: active surveillance

Jake Hannam (to Everyone): 5:47 PM: Axumin

Jake Hannam (to Everyone): 5:49 PM: PSMA

scott (to Everyone): 5:52 PM: gentlemen: I have to go at 6 pm to make dinner….see you on another call

Ken A (to Everyone): 5:53 PM: hey Scott lets try that lunch once again.

Peter Kafka (to Organizer(s) Only): 6:00 PM: Wow! A 30 year journey as a GL-9 with BRCA +, A poster man! I hope I get half that kind of run.

Ken A (to Everyone): 6:02 PM: Dang I agree 100 percent…..

Peter Kafka (to Organizer(s) Only): 6:34 PM: Just letting you all know that I spent 2 hours on the phone with my buddy Mr. Sharma in Delhi, India the other day. This was my 2nd round with Del Service from India. I think we got my sound problems resolved this time. I now have a 1-year service contract and Sharma recommended that I check in at least every 2 months if not every month for a “tune up”.

AnCan – rick (to Everyone): 6:40 PM: Theraworks

John I (to Everyone): 6:42 PM: spelled theraworx

AnCan – rick (to Everyone): 6:42 PM: tx John

Jeffrey Bates (Private): 6:43 PM: Thanks John

Jeffrey Bates (Private): 6:54 PM: who is the balding man with glasses an grey/black goatee. he is sitting on couch with blue blanket behind him and a window

AnCan – rick (to Jeffrey Bates): 7:02 PM: John Ivory also young like you; in Chicago.

John I (to Everyone): 7:02 PM: Yes–you saw it?

AnCan – rick (to John I): 7:03 PM: Please connect with Jeff B

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Oct 28, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Oct 13, 2020

Editor’s Pick:  Brain fog is a familiar subject to many who follow our group … today we pick it apart!

Topics Duscussed

Clinical trial ins & outs; lymphedema, edema and acupuncture; PSMA scan availability; germline mutations; colonoscopies and anaesthetic; mangaing progression with spot SBRT; combating brain fog; port installation; SBRT radiation to the gland; PSA nadir; abi, enz and hypertension..

Chat Log

John I (to Everyone): 3:35 PM: Haha, thanks–it’s the sweatshirt for the cold Chicago winter 🙂

John I (to Everyone): 3:37 PM: It’s FANTASTIC right now. Sitting outside because there will be few days (or hours?) left that are warm

John I (to Everyone): 3:38 PM: Nice fall colors too–will probably peak in the next week

Len Sierra (to Everyone): 3:38 PM: I have the sweatshirt, too. Very warm and soft. Nice job, Peter and Jeffrey, his son.

Lou (to Everyone): 3:55 PM: going to conference on ui and ed @7

Peter Kafka (to Everyone): 4:03 PM: I have two sweatshirts in my closet and have to wait until February before the weather is cold enough to wear them here on Maui.

Rusty (to Everyone): 4:39 PM: Complete Fall in NH, peak colors this weekend. Snow in the mountains later this week. Our 8 weeks of summer were nice though.

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Oct 28, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Oct 5, 2020

Editor’s Choice: ‘Young’ man with little kids faces liver mets; &, good discussion of current clinical trials.

Topics Discussed

55-yr old man sees cancer metastasize to liver; getting a port; chemo fatigue; switching oncs to a GU specialist; ipilimumab+nivolumab; scans if not PSMA avid; edema explained by lymphedema; current trials discussed for mCRPC; staying the course 2nd time around with docetaxel; consider SBRT before IMRT; abi or enz first; 2nd timne around for PSMA, but where?; use the same lab for your tests; Viewray @ UCLA used for salvage RT; fatigue from RT+HT – exercise!

Chat Log

Carl Forman (to Everyone): 5:09 PM: Shana Tova to our Jewish participants.

Herb Geller (to Everyone): 5:10 PM: Thanks, Carl. L’Shana Tovah to all as well

David Muslin (to Everyone): 5:11 PM: L’Shana Tova guys

AnCan Barniskis Room (to Everyone): 5:22 PM: L’shana tova to all … may you all be well inscribed

Len Sierra (to Everyone): 5:34 PM: Talking to children about a parent’s terminal illness. http://tiny.cc/mssysz

John I (to Everyone): 5:34 PM: Fraz, I remember seeing a story like this a long time ago. A guy recorded answers to all the questions his 6 & 8 year olds would have after he was gone. https://abcn.ws/36DOFj4

John I (to Everyone): 5:34 PM: Definitely

John I (to Everyone): 5:35 PM: I’m not as qualified as you, but happy to help when it gets tough for you

John I (to Everyone): 5:46 PM: The Under 60 group is this Thursday (in 3 days) 7 pm – 8:30 pm EDT

Mark Perloe (to Everyone): 6:28 PM: might Alan be eligible for a 177 Lu clinical trial?

alan moskowitz (to Everyone): 6:44 PM: Mark – I would be reluctant to do that Lu trial – I think one needs to have exhausted other conventional treatments first. In my mind it is too experimental in nature – but it is on my Radar.

Carl Forman (to Everyone): 6:54 PM: Global Knowledge Exchange Webinar: NEXT GENERATION PSMA 6 speakers + Q&A; beta, alpha, auger + more Register here: http://bit.ly/nextgenpsma Proudly hosted by @pros_tic @PCF_Science Oct 7 12PM PT 3PM ET

Mark Perloe (to Everyone): 7:06 PM: consider ViewRay SBRT 5 days with no fiducials or spaceOAR. See ViewRay.com. I finished today.

Mark Perloe (to Everyone): 7:09 PM: Thanks Rick. such good advice.

AnCan Barniskis Room (to Everyone): 7:11 PM: https://ancan.org/shop/

John I (to Everyone): 7:11 PM: https://amzn.to/2I0YI7G That’s for the sweatshirt: https://amzn.to/2I0YI7G

John I (to Everyone): 7:14 PM: Gotta run, guys, Thanks! See the young’uns on Thursday.