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

Webinar: Prostate Cancer Connections – Genetics, Genomics and Prostate Cancer

Webinar: Prostate Cancer Connections – Genetics, Genomics and Prostate Cancer

AnCan was deeply honored to co-present the webinar “Prostate Cancer Connections: Genetics, Genomics and Prostate Cancer” with US Too International.

For the second of our three Prostate Cancer Connections webinars, we offer a discussion on genetics, genomics and prostate cancer. About this exciting emerging topic, panelist Katie Stoll states, “Genetic testing technology is changing rapidly and there are a growing number of genetic testing options available. We’re here to help you sort through the wealth of information in this new age of genetics. Our goal is to provide objective expertise and latest developments.”

Recorded on Thursday, October 15, 2020, you’ll enjoy hearing from distinguished panelists Heather H. Cheng, MD, PhD  (Director, Prostate Cancer Genetics Clinic, Seattle Cancer Care Alliance),  Katie Stoll, MS, LGC (Executive Director, Genetic Support Foundation), James Barrett DeLong  (Patient Perspective, University of Washington School of Social Work, Lecturer Emeritus), Janet Shimabukuro (Patient Perspective).

Watch this outstanding webinar here:

 

For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Nov 2, 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. :-(])

Webinar: The TALK – Multiple Sclerosis

Webinar: The TALK – Multiple Sclerosis

On our third edition of The TALK, a series of webinars addressing how parents and kids of every age speak to each other about their health conditions, we had an amazing night with marvelous members of the Multiple Sclerosis community.

On Wednesday, September 30, we were honored to have Dr. Aaron Boster (Board-Certified Neurologist specializing in Multiple Sclerosis and related CNS inflammatory disorders, founder of The Boster Center for Multiple Sclerosis, and popular MS Vlogger.) gives a passionate perspective on MS and community. Brenda Miller (MS certified nurse and MS patient) moderated conversations with Dr. Boster and our excellent panelists featuring: Karrie Anderson (diagnosed in 2010), her husband, Cris, and their 13-year-old son, Kellen. Wanda Terrell (diagnosed in mid-1990s) and her 27-year-old daughter, Tazia. Justin Weiss (diagnosed in 2008), his 17-year-old daughter, Megan. And Channing Barker (diagnosed in 2006 when she was 16) with her mother, Patti.

You’ll hear about different challenges these families have experienced (and overcame), talking about your diagnosis, and how MS impacts everyone. We sincerely thank our medical experts, panelists, and co-sponsors A Couple Takes on MS; Jennifer and Dan Digmann.

Watch this amazing webinar, here:

 

For information on our peer-led video chat MULTIPLE SCLEROSIS VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

Webinar: Active Surveillance & Beyond – with Dr. Brian Helfand

Webinar: Active Surveillance & Beyond – with Dr. Brian Helfand

Dr. Brian Helfand, (Head of Urology at NorthShore University HealthSystem) gave the second webinar in the four-part series called “Active Surveillance & Beyond” on September 29, 2020. His topic was genomics, genetics, and decision-making in active surveillance. He explains the pros and cons of the leading tests in the field and who may be a candidate for such testing. We want to thank Dr. Helfand for taking the time to answer several of our attendees’ questions at the end of his excellent presentation.

Also making an appearance, our AS Virtual Support Group moderators and community members, Joe Gallo, Elliot Kerman, Howard Wolinsky. Including special guests: Jim Schraidt (Chairman of Us TOO), and Beau Stubblefield-Tave (Executive Director at Us TOO).

Watch this fascinating and informative webinar here:

 

To view the slides from this webinar, click here.

Register for future webinars in our AS Series:

For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

Webinar: The Past, Present and Future of Active Surveillance – with Dr. Peter Carroll

Webinar: The Past, Present and Future of Active Surveillance – with Dr. Peter Carroll

Our “Active Surveillance & Beyond” webinar series here at AnCan has been wildly popular. With top medical experts in AS giving incredible presentations and answering your questions, it’s a hit for a reason. We had the pleasure of having Dr. Peter Carroll (Department of Urology, UCSF), who is considered a pioneer in AS, start us off with a blast!

Hear his thoughts on biopsies, who best qualifies for AS, and how he uses AS in his own practice. We want to thank Dr. Carroll for answering so many of our attendees’ questions. You’ll also see our own AS Virtual Support Group moderators and community members, Joe Gallo, Mark Lichty, Elliot Kerman, Howard Wolinsky, and special guest: Jim Schraidt, Chairman of USTOO.

To watch this outstanding webinar, click here: https://www.youtube.com/watch?v=B7v8KaU2UQ0

To view the slides from this webinar, click here.

Register for future webinars in our AS Series:

For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

Webinar: The TALK – Ovarian Cancer

On our second edition of The TALK, a series of webinars addressing how parents and kids of every age speak to each other about their health conditions, we had the pleasure of having the ovarian cancer community share their perspectives with us.

On Wednesday July 29th, with an excellent discussion moderated by Dr. Pamela Munster (co-leader of the esteemed UCSF Center for BRCA Research), and top medical experts in the field Dr. Jocelyn Chapman (Board certified Gynecologic Oncologist at UCSF), and Beth Peshkin MS, CGC (Professor of Oncology and the Director of Genetic Counseling at Georgetown Lombardi Comprehensive Cancer Center).

We were so thrilled to have our own Ovarian Cancer Virtual Support Group moderator Ilana Feuchter (of NOCC) welcome our guests and attendees. Most important of all, we had wonderful family members of all kinds share vulnerable and honest conversations about their own “talks”. Maria Ciesla and her daughter, Alex Cornwell. Ni Guttenfelder, and her sister Leigha. Elena Solomon, and her daughter Liz Solomon. And the McConnell family, with Craig, Ross, and Corey.

There were many laughs, tears, and heartfelt moments. Including great answers to your questions by our experts. We want to thank our co-sponsors Sharsheret, NOCC (National Ovarian Cancer Coalition), FORCE (Facing Our Risk of Cancer Empowered), and UCSF Helen Diller Family Comprehensive Cancer Center.

Watch this incredible webinar, here:

 

For information on our peer-led video chat OVARIAN CANCER VIRTUAL SUPPORT GROUP, click here.

To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.

 

 

The Paradox of Invention and Innovation

The Paradox of Invention and Innovation

Peter Kafka’s musing this week, looks at how invention and innvation can be a two-dged sword.

Please bear with me on these thoughts, because I don’t know where I am going but I think it important to consider.  Yesterday my son and I went out to change the brake pads on my Toyota.  I am the middle man in a three-generation tradition of shade tree mechanics.  The notion is that “if it was put together by a human then it can be fixed by one”.  I believe that many men carry the DIY gene, and women too.  This notion changed a bit when our creations became super complex and computerized and we had to seek expert help in certain repairs that were beyond the scope of a You Tube video.  But still the tradition carries on.  The DIY gene has not mutated.

When it comes to the break down of the human body, or the interruption of certain natural cycles in the world at large this “Do It Yourself” gene springs into action.  As a result, truly amazing achievements have been made in the field of medicine and science in recent years and there seems at times to be no end in sight.  The notion is that if we “put our minds to it” we can fix anything.  This is currently being played out with great intensity to find a vaccine for Covid-19.

I know my life has benefitted from the many advancements of science and medicine.  I am not complaining.  My life has been extended, like many millions for whatever purpose.  But like many things, it is a two-edged sword.  The extended life expectancy and health of human beings on this planet has been at the expense of many other life forms in the plant and animal kingdoms.  This thought should give anyone great pause.  Perhaps I should leave it there.  Make of this paradox what you will.  

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

The Paradox of Invention and Innovation

Cancer Causing You Problems at Work??? …… we have an answer!

Sometime over the past month, a man attended one of AnCan’s video chat, virtual support groups with a big problem on his mind.  This man had been on hormone therapy – more precisely androgen deprivation therapy, for close to 12 months and he was suffering, physically and mentally from having little or no testosterone in his body. He was fatigued, had “Lupron Brain” – brain fog, and was emotionally on the edge … all the time.  Moreover,  & understandably, he didn’t want to let his employer and workmates know he lived with advanced cancer. Result ….. he unintentionally upset colleagues, couldn’t complete his work tasks and …. received an offiicial employment warning.

This fellow came to us for support, and the best we could do was to suggest he speak to Human Resources under confidentialty; and/or  seek an employment lawyer. What we didn’t know is that there is a non-profit out there to assist … and in their own words, this situation is their bread and butter.

Cancer & Careers is dedicated to tackling cancer-related problems in the workplace. Whether involving healthcare, employment, job seeking, employment law, Covid, or working through treatment – Cancer and Careers will help you resolve any of these issues and more, both one on one and through webinars, handouts, and other educational supplements. Check out their website and don’t hesitate  to reach out to them if you have a question that needs answering.

What’s more, Brian Morvant, a senior program coordinator at Cancer & Careers told us just today in a presentation for our Male Breast Cancer Virtual Support Group that Cancer & Careers still offers a maximum grant of $500 per family experiencing financial challenges … apply now!