Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, July 5, 2021
Apologies for starting the recording late this week – but we made up for it by going almost 1 hour overtime! That’s what happens when the Calendar causes us to miss a week.
Editor’s Choice: Maybe we can control hot flashes after all …… and dexmethasone may ease chemo lows (rd)
Topics Discussed – order may be a little off this week …. sorry!
Uro fails to follow up w. denovo Mx Dx; neighbor provides care & guidance where not really wanted; managing advanced PCa since 2009 with IHT; the Embr gizmo brings succes; starting Ac225+pembro+enz trial; Pylarify now available; genetic testing; orchiectomy v LHRH; Orgovyx; Stability continues for man who started with 3000 PSA; 20th chemo coming up!; Dex may ease chemo low; Medical MJ for appetite and more; huge fatigue – but maybe overdoing it?; negotiating a drug holiday; PSA low end for a Pylalrify result; darolutamide could work; switching docs at The James; chemo brings results with just 6 sessions
Chat Log
John Ivory (to Everyone): 5:29 PM: My father & uncle had prostate cancer; my mother had breast cancer, but my germline was negative
John Ivory (to Everyone): 5:33 PM: abiraterone (sometimes known by brand name Zytiga
Dennis Correia (to Everyone): 5:39 PM: Dr. Parminder Singh at Mayo Hospital in Phoenix.
scott (to Everyone): 6:20 PM: Sorry for the repeat, how do you spell the specific oncologist from earlier?
Ancan – rick (to Everyone): 6:24 PM: Genitourinary medical oncologist
David Muslin (to Everyone): 6:24 PM: I give pat alot of credit for helping however, you can’t help someone who does not want to help themselves.
George (to Everyone): 6:34 PM: I signed up but was rejected because I don’t have hot flashes (yet).
John Ivory (to Everyone): 6:39 PM: For those on abiraterone, a reminder that the instructions say no grapefruit
Jeff Marchi (to Everyone): 6:40 PM: same with viagra!
John Ivory (to Everyone): 6:46 PM: SO good to hear, Ken!
David Muslin (to Everyone): 6:47 PM: You are an inspiration Ken
Peter Kafka (to Everyone): 6:48 PM: Ken, you are amazing! Good going
Bruce Bocian (to Everyone): 6:52 PM: Anyone try the Prolaris genetic test kit?
Len Sierra (to Everyone): 6:54 PM: Prolaris is useless for guys who are high risk/recurrent/advanced, i.e., this group.
Bruce Bocian (to Everyone): 6:54 PM: Ok thanks, Im thinking for my sons
Jimmy Greenfield (to Everyone): 6:54 PM: When I was taking dexamethasone I was cleaning the house constantly. My wife was sad when I was done -wanted me to get a scrip just for that
George (to Everyone): 6:55 PM: Woodburn Nuclear Medicine in Annandale Virginia for Pylarify PSMA-PET scan.
Jefferson (to Everyone): 6:55 PM: wwhere is fairfax ?
George (to Everyone): 6:56 PM: Fairfax 10 mi from Washington DC
Joel Blanchette (to Everyone): 6:57 PM: PSMA scan at Woodburn Nuclear Medicine & Metro Region PET Center
Pat Martin (to Everyone): 7:00 PM: Some tumors can make the T they need. As was explained by my MO
John Ivory (to Everyone): 7:12 PM: My question isn’t prostate related (is for My Mom), so I’ll just post it here. I’ll also go to caregivers tomorrow. Does anyone have any experience using medical marijuana as an appetite stimulant? Mom is down to 78 pounds from 100+ Looking for any way to stimulate her appetite
Jefferson (to Everyone): 7:16 PM: thank you ALL my oncologist has order blood genetic testing and was approved full help with the cost. I BELIEVE you have given me something to think about.
Len Sierra (to Everyone): 7:16 PM: The only cannabis drug approved by FDA for appetite stimulation is called Marinol (dronabinol). Marinol: https://www.accessdata.fda.gov/drugsatfda_docs/label/2005/018651s021lbl.pdf
John Ivory (to Everyone): 7:17 PM: Thanks Len–will look into that too
Pat Martin (to Everyone): 7:23 PM: Comprehensive Metabolic Panel
Pat Martin (to Everyone): 7:31 PM: see all next Tues.
Len Sierra (to Organizer(s) Only): 7:32 PM: Gotta drop off, guys. Have a good week.
Bruce Bocian (to Everyone): 7:39 PM: Good night!
John Ivory (to Everyone): 7:49 PM: I’m on abiraterone w/o mets
Jeff Marchi (to Everyone): 7:51 PM: problem getting insurance to pay without metastasis
Herb Geller (to Organizer(s) Only): 7:53 PM: I gotta go soon. Bedtime!
Ancan – rick (to Everyone): 7:59 PM: Amir Mortazavi
Herb Geller (to Everyone): 7:59 PM: Gotta go. See you all Tuesday.
John Ivory (to Everyone): 8:00 PM: @Jeff wow, I got lucky then–maybe bc I failed surgery & radiation… Both ACA plan & now Medicaid have paid (I’m too young for Medicare)
George (to Everyone): 8:01 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/amir-mortazavi
A real friend is one who walks in when the rest of the world walks out. – Walter Winchell
I really love this quote. Having cancer, serious, chronic, or rare illness is so isolating. Even if you have ample support from family and friends, nobody knows your situation like a peer does. It’s beyond comforting to join my thyroid cancer virtual support group and instead of explaining a symptom / side effect, I can just share what is going on, with reassuring nods, and validating comments.
At AnCan, support is personal. Our support group moderators are incredible people who sign up to help fellow peers just like them. They are here to celebrate the good days, mourn the bad days, and even fellowship during the blah days in-between. It’s not surprising that our people even gain deep, meaningful friendships.
Rick and I received this breathtaking photograph of our MS support group moderators Dan and Jennifer Digmann and Kim Stroeh meeting up together in Iowa. This makes our hearts so happy, and is really what AnCan is all about. Never being alone, in whatever you are facing. Our MS group is such a great example of community.
Thanks, Dan, Jennifer, and Kim for the smile today.
Here’s to friendships, and support wherever you are!
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.
At AnCan, we love any reason to celebrate, and this is a GREAT reason!
Our Active Surveillance Prostate Cancer Moderator Howard Wolinsky and his wife Judi celebrated their 50th wedding anniversary on June 29th. Surely this picture of them on their wedding day will make your heart melt!
All of us want to give a huge THANK YOU to Howard for all he does for AnCan and the AS community. We are so grateful for Howard providing thoughtful discussion topics, insightful speakers, and bringing important subjects to the AS community to the forefront.
Judi is also beloved in the community, as the way Howard highly speaks of her would make anyone a fan as well.
Happy Anniversary, Judi and Howard! Here’s to 50 years of being great together, and may there be many, many more.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On June 23rd, we had the pleasure of having Stephanie Weisman!
Stephanie is Artistic Director and Founder of The Marsh, and has been personally touched by her own and loved ones’ cancer experiences.
June’s Solo Arts Heal was the grand premiere of “Stephanie’s Tidbits on Living While Maybe Dying“. This solo performance short is focused on Cancer Victim/Survivor PTSD (post-traumatic stress disorder). It explores what recovery means when the outlook is unpredictable, And how one copes, both at survival and creative levels, with the stress of cancer, its treatment and moving beyond.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
On June 30th, we hosted a fascinating and informative webinar titled “Advocating for Rare Diseases“.
We had Katelyn Laws (Rare Disease Legislative Advocates Program Coordinator) give a great outline of what advocacy is, what types of advocacy there are, and how to do it. AnCan’s Sarcoidosis virtual support group moderator Cathleen Terrano moderated and sparked fascinating conversation with our panelists Ritchie Johnson (Renal Medullary Carcinoma), Charles Mickles (Young Onset Parkinson’s Disease), and Trina Massey Davis (Sarcoidosis).
I had the pleasure of jumping in for the Q&A segment, which was a wonderful (and real!) discussion many topics, such as discouragement when advocating, how to write out your story, and more.
Watch this phenomenal presentation here:
Special thanks to Myovant Sciences – Pfizer, and Foundation Medicine for sponsoring this webinar.
On June 29th, we hosted an exceptionally relevant webinar titled “Is Active Surveillance Safe for Black Men?”. Dr. Willie Underwood (Board Certified Urologist, Executive Director of Buffalo Center for Health Equity, and American Medical Association Board of Trustees member) and Anthony Henry (First Vice President of The Walnut Foundation) joined us for this important conversation.
Dr. Brandon Mahal was scheduled to join us, however he is actively volunteering at the Miami collapse area. Thank you Dr. Mahal for helping, and we hope to see you soon!
We want to sincerely thank Dr. Underwood and Anthony for answering questions, and providing their perspectives.
Watch this fascinating presentation here:
Special thanks to Myovant Sciences – Pfizer, Foundation Medicine, and Advanced Accelerator Applications for sponsoring this webinar.
Ritchie Johnson is in the dictionary for “turning pain into purpose“. She founded the Chris “CJ” Johnson Foundation in honor of her son Chris, with the goal of ending Renal Medullary Carcinoma. We are so humbled to have her as lead moderator for the RMC virtual support group.
It’s no surprise that Ritchie is very popular in the Kidney Cancer community, and is only getting more popular! She was invited to be on Good Morning America’s GMA3 to share her story and how she is actively helping the RMC community.
We’re also pleased to have Ritchie as a panelist for our upcoming webinar “Advocating for Rare Diseases” on June 30th. She’ll discuss her own advocacy journey, and you’ll hear from other amazing members of the Rare Disease community as well. (click image for pdf)
For information on our peer-led video chat RENAL MEDULLARY CARCINOMA 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.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal! It just so happens to be the 4th Wednesday today, so be sure to check out a can’t miss SAH with The Marsh founder, Stephanie Weisman TONIGHT at 7:30 PT!
On May 26th, we had the pleasure of having Jimmy Greenfield!
Jimmy is a professional guitarist, singer and teacher from Washington, D.C. He has performed in many combinations as a soloist and bandleader in many different genres of music.
Jimmy performed jazz standards that are close to his heart. His mother exposed him to jazz daily from his earliest years. His fondest memories of her live on through these songs.
Watch this incredible performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Support – Men & Caregivers Recording, June 21, 2021
ASCO 2021 REVIEW
Prior to the start of today’s Support Group meeting, Herb Geller and Len Sierra highlight the most significant advanced prostate cancer papers from this year’s ASCO Conference. If you choose to skip directly to the ‘regular’ session, please go to 56:40 .
REGULAR SUPPORT GROUP MEETING
Editor’s Pick:Herb’s & Len’s review of ASCO is definitely worth a listen. But at the other , very basic extreme, Peter raised an important topic – how to remember to take your daily meds! (rd)
Topics Discussed
Consider a drug holiday after 7 yrs ADT; early Dx of BRCA in advanced PCa; what’s left after trying everything SOC?; nocturia; remembering to take your pills; consideration when starting ADT; insurance complicates radiating primary for Mx man
Chat Log
Mark Perloe (to Everyone): 4:31 PM: How long was ADT+abiraterone in the Peace 1 study
AnCan – rick (to Everyone): 4:36 PM: SOC in PEACE includes docetaxel. I read the purple slide differently
AnCan – rick (to Everyone): 4:45 PM: Sip-T = Provenge
Ted Healy – Portland, OR. (to Everyone): 4:55 PM: is this the interferon that has been used in the past for cancer and Hepc patients?
Ken (to Everyone): 4:56 PM: Herb your doing great….
Ted Healy – Portland, OR. (to Everyone): 4:57 PM: gotta go. Thank you so much!
Jake Hannam (to Everyone): 5:00 PM: Thank you Len and Herb!
Len Sierra (to Everyone): 5:01 PM: our pleasure and privilege!
Ken (to Everyone): 5:01 PM: many thanks….
AnCan – rick (to Everyone): 5:23 PM: herb@ancan.org and len@ancan.org
Mark Perloe (to Everyone): 5:46 PM: But I think he needs ADT and abiraterone first. If he has a few isolated lesions, I wonder if SBRT might be appropriate if a low dose of tumor. I went to UCLA.
John Ivory (to Everyone): 6:08 PM: Is this she? Research doesn’t look like a GUMO https://www.urmc.rochester.edu/people/22423597-adrienne-victor
Joe Murgia (to Everyone): 6:12 PM: I just looked up Dr Peter Van Veldhuizen at U of R and he is chairman of GU Oncology
Len Sierra (to Everyone): 6:18 PM: https://pubmed.ncbi.nlm.nih.gov/30236961/ Evaluation of Response to Enzalutamide Consecutively After Abiraterone Acetate/Prednisone Failure in Patients With Metastatic Castration-resistant Prostate Cancer
Jake Hannam (to Everyone): 6:20 PM: darolutamide or Nubeqa
Russ (to Everyone): 6:22 PM: Gotta run guys. Have a great night.
AnCan – rick (to Everyone): 6:27 PM: Myrbetriq
Joe Gallo (to Everyone): 6:28 PM: tamsulosin = FLOMAX
AnCan – rick (to Everyone): 6:29 PM: pumpkin seed oil
John Ivory (to Everyone): 6:29 PM: Quick PSA (public service address): Wednesday evening, turn off Netflix/HBO/basic cable and turn on our next Solo Arts Heal episode! “Living While Maybe Dying,” Performance about health anxiety with discussion. 10:30 PM ET/7:30 PT (also recorded for later viewing). https://ancan.org/solo-arts-heal/
Pat Martin (to Everyone): 6:32 PM: Zytiga 2x a day?
Joe Murgia (to Everyone): 6:32 PM: I use the upside down bottle too!
Blee in Virginia (to Everyone): 6:34 PM: They make those things for 2, 4,6 times per day Pat Martin (to Everyone): 6:34 PM: I use two weekly pill storages. One has a.m./p.m. I use a separate one for my Abi. one of the benefits of getting up through the night.
John Ivory (to Everyone): 6:37 PM: Also, if you didn’t attend Solo Arts Heal with our own Jimmy Greenfield last month, you owe it to yourself to have a look/listen after this call! https://www.youtube.com/watch?v=vp1xBkc3am8&t=1s
George (to Everyone): 6:38 PM: Pill organizer several times per day https://flents.com/products/maxi-pharmadose-pill-planner?variant=35230637686940¤cy=USD&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gclid=CjwKCAjw8cCGBhB6EiwAgORey8B_S4j34lw0AuB9MJ8lRi5CC_GpMJp_grpNMb6RJnZd2XleXVXMVBoCq4IQAvD_BwE
John Ivory (to Everyone): 6:42 PM: Relu GO lix. Yes, Or GO vix is correct. Always emphasis on the GO. Not sure why my mic isn’t working tonight
Mark Perloe (to Everyone): 6:47 PM: Rick, I light up like a searchlight at 0.3
Jake Hannam (to Organizer(s) Only): 6:48 PM: Antonarakis told Joel he expects PSMA scans to be available in July at Hopkins, anyway
AnCan – rick (to Everyone): 6:48 PM: But am I doing better in pronunciation Mr .I?
Herb Geller (to Organizer(s) Only): 6:50 PM: I think it will be more generally available very soon.
Marty Rotter (to Everyone): 6:52 PM: I stayed on 1 month Lupron for recurrence before having salvage radiation. Started with 30 days to see how it would effect me and stayed on it monthly for 5 more months.
Joe Gallo (to Organizer(s) Only): 6:52 PM: The Pyl may be more readily available since it has longer half life vs. G68 which is only hours – needing a generator or cyclotron.
Pat Martin (to Everyone): 6:52 PM: Get another PSA test to determine doubling time.
On June 2nd, Dr. Michael Schweizer (Assistant Professor, Division of Medical Oncology University of Washington School of Medicine) spoke at our Active Surveillance Virtual Support Group with a presentation titled “Meds: A potential new path to keep men on AS?”
As a medical oncologist of the Fred Hutch Cancer Center in Seattle, he usually sees no patients on active surveillance for low- to favorable intermediate-risk prostate cancer. But this changed when he conducted a study of how apalutamide, a drug used in men with more advanced cancer, on men on AS.
Dr. Schweizer said: “My goal is to help reduce the morbidity and mortality associated with diseases like prostate cancer through developing novel drug therapies.” He plans to study the impact of other meds on men on AS to offer a new way of managing AS.
We want to thank Dr. Schweizer for answering questions!
Watch here:
To view the slides from this presentation, click 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.
