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 19, 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 19, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Sept 7, 2020

 

Editor’s Pick:  Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!

Topics Discussed

Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?

Chat Log

Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control

Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.

Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?

Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.

Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.

Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT

Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern

Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?

Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend

John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that

AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/

Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?

Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?

Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.

Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?

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

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 17, 2020

 

Editor’s Pick: Even amongst the best GU med oncs, some work with you and some do not. Hear how one makes it tough to access darolutamide (Nubeqa) while another does not.

Topic Discussed

Handling transition after intial treatment on RT + ADT; recurrence after RP 7 yrs ago; locating a PSMA scan; partial ADT holiday; using lighter exercise to fight fatigue; enzalutamide crippling – access darolutamide; staus of NHI PSMA trial; don’t fall for questionable trials; what next after PARP?; incontinence no more; SBRT salvage radiation; hernia experiences

Chat Log

Ron Bucher (to Everyone): 5:18 PM: I attended advanced groups before I became an advanced patient, and I’m glad I did.

Herbert Geller (to Everyone): 5:56 PM: https://www.uclahealth.org/urology/iuo/an-experimental-imaging-scan

Herbert Geller (to Everyone): 5:59 PM: Nat Rev Urol . 2016 Apr;13(4):226-35. doi: 10.1038/nrurol.2016.26. Epub 2016 Feb 23. Current use of PSMA-PET in prostate cancer management Tobias Maurer 1, Matthias Eiber 2, Markus Schwaiger 2, Jürgen E Gschwend 1 Affiliations expand PMID: 26902337 DOI: 10.1038/nrurol.2016.26

Len Sierra (to Everyone): 6:00 PM: PSMA as therapy: https://www.prostatecancer.news/

Jeremy (to Everyone): 6:16 PM: Master Ming Tong Gu https://www.youtube.com/watch?v=Oj0ewBvr6zM&list=PLnQPg9ef3v52NHuQ1WIO8yjN-2yqpqIcs&index=13&t=4s

Len Sierra (to Everyone): 6:18 PM: You have to go to: smile.amazon.com

Russell Smith (to Everyone): 6:24 PM: Just signed up on Smile.amazon.com

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – May 18, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – May 18, 2020

Editor’s Pick – Low PSA with high volume metastasis (rd) + successful treatment for ‘young’ man with de novo metastatic disease

Topics Discussed

de novo Mx with low PSA; clinical trial conflicts; biopsy sample from primary vs. Mx tumor; relevance of bone density tests; young de novo Mx man finds successful treatment; debulking the primary; when the end may not be the end!; bone biopsies; testing for PSMA avidity; PSMA scan availability in Covid times; testosterone swings; shipping delays for abiraterone; specialty pharmacies; what is the ‘doughnut’ hole?; abscopal/immuno effect from RT

Chat Log

scott (to Everyone): 5:05 PM: is this link the same link for all meetings?

Ken Anderson (to Everyone): 5:06 PM: scott yes this is the same meeting room

scott (to Everyone): 5:07 PM: 100 degrees isn’t fun…

Dell Jensen (to Everyone): 5:38 PM: Both Lupron and Docataxel

Dell Jensen (to Everyone): 5:43 PM: Rick is correct, treating the primary is critical

scott (to Everyone): 5:48 PM: is docetaxyl an infusion or a pill?

Dell Jensen (to Everyone): 5:48 PM: infusion

Ken Anderson (to Everyone): 5:49 PM: infusion once every three weeks

scott (to Everyone): 5:49 PM: do you do docetaxyl if the Zytiga I am on isn’t working?”

Ken Anderson (to Everyone): 5:49 PM: you can for sure do both at the same time…

scott (to Everyone): 5:51 PM: does the docetaxil have hard side effects?

Dell Jensen (to Everyone): 5:51 PM: osteoporosis is a result of ADT treatment

Dell Jensen (to Everyone): 5:51 PM: I definitely concur

Dell Jensen (to Everyone): 5:52 PM: my side effects were minimal, infections were my problems.

Ken Anderson (to Everyone): 5:52 PM: all chemo has side effects.. doce has some for sure and all are post on the web.

scott (to Everyone): 5:53 PM: thanks ken

Peter Kafka (to Everyone): 5:54 PM: I had a specialized genetic test from MIRA labs that gave me a risk assessment for developing a grade 2 or greater adverse reaction to PD1/PDL1 agent therapy.

Russ Smith (to Everyone): 6:28 PM: Good night all. It’s been a long day.

scott (to Everyone): 6:31 PM: is david muslin head of answer cancer foundation?

Len (to Everyone): 6:35 PM: No, Rick is head of AnCan

scott (to Everyone): 6:36 PM: I sent a donation to ancan fdn in honor of rick and have heard nothing

Len (to Everyone): 6:36 PM: It will be acknowledged soon, if in fact they received it properly.

scott (to Everyone): 6:37 PM: thanks…just want to make sure rick is honored by donation

scott (to Everyone): 6:39 PM: is speaking freely 8 pm az time?

Rich Jackson (to Everyone): 6:43 PM: Speaking Freely starts at 8pm EST.

scott (to Everyone): 6:43 PM: thanks

Rich Jackson (to Everyone): 6:43 PM: Same connection as this call.

scott (to Everyone): 6:53 PM: who is the gentleman now speaking?

Dell Jensen (to Everyone): 6:53 PM: Correia

Dell Jensen (to Everyone): 6:55 PM: Are there other compounding pharmacy?

Dell Jensen (to Everyone): 6:57 PM: I have local one that is in Rock Island, IL