Hi-Risk/Recurrent/Advanced PCa Video Chat, May 16, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 16, 2022

by | May 20, 2022 | Cancer Caregivers, mCRPC, nmCRPC, Prostate Cancer, Recorded Groups

Hi-Risk/Recurrent/Advanced PCa Video Chat, May 16, 2022

Two upcoming events to mention first ….. Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer with Drs. Stacy Loeb (NYU) and Justin Gregg, Tue, May 31 @ 8.00 pm Eastern. Register at https://register.gotowebinar.com/register/4324977789022538512

It Ain’t Your Grandpa’s BPH with Dr. Steve Kaplan (Mt. Sinai, NYC) Wed, June 1 at 8.00 pm No registration required – just join live https://www.gotomeet.me/AnswerCancer     We’ll be talking all issues around frequency, urgency, nocturia and more. Send your questions to joeg@ancan.org

AND – if you’re a Vet, watch this space. AnCan will be launching a new Vets Group to help navigate medical care. It is not exlclusively prostate cancer, so tell Vet friends. 4th Thursday starting June. If you want to sign up please write Group Leader Joe Gallo joeg@ancan.org.

All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/

Editor’s Pick: Lotsa folks and topics – but save the best til last when a Care Partner gives her perspective(rd)

Topics Discussed

Denovo Mx G5+5 calls for triple line attack; handling a recent hi-risk Dx; PSA rise leads to consult with Dr. E; blood clots in bladder down to RT cystitis?; Mod’s lung nodules need Bx; starting IHT after 4 yrs; abi should not prevent Provenge; letting PSA rise for PSMA scan; do low dose steroids impact muscle strength?; darolutamide approved by Bayer; Ac225+Lu177 started; PSA eventually turns down post spot RT; post Brachy +IMRT maybe a PSMA?; enlarged gland post SBRT??; Care partner offers her perspective

Chat Log

Peter Kafka – Maui (to Organizer(s) Only): 5:23 PM: I spoke to Blue Earth a month ago or so and they did not offer Axumin on the Islands at that time. The Ga68 “kit” just came to Honolulu but it is not yet up to speed in terms of reading results according to my oncologist.

AnCan – rick (to Organizer(s) Only): 5:27 PM: Peter – that can’t be correct. There is software immediately available to read the Pylarify scan now.

Peter Kafka – Maui (to Organizer(s) Only): 5:29 PM: That is what my local oncologist told me last week when I met with him. Also my local Rad onc said it is only the Ga68 scan and that is very recent.

Ravi (to Everyone): 5:33 PM: how come no one is talking of radiation

Stephen Saft (to Everyone): 5:34 PM: Isn’t the most urgent thing for Bruce to do is to see a GU oncologist

Jeff Marchi, San Francisco (to Everyone): 5:35 PM: PROMISE is Open to All Prostate Cancer Patients Patients in any stage of treatment or survivorship are invited to join PROMISE.

AnCan – rick (to Everyone): 5:35 PM: Ravi – He’s denovo metastatic …… and he is being seen by a urologist. Radiation should follow ….

eric (to Everyone): 5:35 PM: It was alot of info for bruce make sure he can review this call

Jeff Marchi, San Francisco (to Everyone): 5:36 PM: that quote is from the promise site  https://prostatecancerpromise.org for free dna test for prostate cancer to find dna problems

Henry (to Everyone): 5:43 PM: have to run; thanks everyone

AnCan – rick (to Herb Geller): 5:43 PM: mostly BRCA 2 actually Herb

Ori (Private): 6:03 PM: What is the name of the drug that you mentioned which is used to treat people with the BRCA gene

AnCan – rick (to Ori): 6:06 PM: the drug class is PARP-I; there are several drugs – olaparib, rucaparib, niraparib,talozaparib and more.

Stephen Saft (to Everyone): 6:08 PM: I have a friend who has several had UTI as well as 2 clots. I think he was diagnosed in 2018.

Ori (Private): 6:10 PM: Got it. Thank you.

Len Sierra (to Everyone): 6:11 PM: This UCLA Health monograph about Botox for overactive bladder mentions blood in urine as a side effect. https://www.uclahealth.org/womens-pelvic-health/botox#:~:text=Side%20effects%3A

John Ivory (to Everyone): 6:12 PM: I had blood in my urine 1.5 – 2 years after 40 rounds of radiation, but it only lasted for a day or two. Cystoscopy showed nothing. Haven’t had it again. No pain in urination for me.

AnCan – rick (to Everyone): 6:14 PM: Must have happened to me at lest 5 or 6 times post RT – some at least 5 + yrs out. No pain

AnCan – rick (to Everyone): 6:17 PM: Wed June 1, 8.00 pm Eastern Dr. Steve Kaplan, AnCan Barniskis Room. We’ll be talking BPH, urgency, frequency. Bring your questions.

Joe Gallo (to Organizer(s) Only): 6:18 PM: It’s a drop-in First Wednesday meeting at 8 p.m. EST on Wednesday, June 1. Go here for directions to the Barniskis Room to attend the free program, featuring BPH guru, Dr. Steven Kaplan: https://ancan.org/groups/joining-instructions/ Mark it on your calendar.

John Antonucci – CT (to Everyone): 6:25 PM: 3 cm is correct

Peter Kafka – Maui (to Organizer(s) Only): 6:27 PM: My buddy Mark who was on our call 3 weeks ago or so had a lung mass show up on his CT scan.  Biopsy showed “lung” cancer on top of his recently diagnosed GL-9 PCa.  So he is riding the rails right now.  Trying to push him off the Islands but he may stay here.  Low spirits!

Ben Nathanson (to Everyone): 6:31 PM: Thanks, Frank and Alan — and Rick

Alan Moskowitz (to Everyone): 6:32 PM: Rick and others, did any of you have clots that caused a total urinary blockage, or was it just “minor’ bleeding?

AnCan – rick (to Everyone): 6:34 PM: Minor bleeeding for me

John Antonucci – CT (to Everyone): 6:35 PM: Alan, my brother had the same painful bloody blockage and clots.  This was before his prostate CA diagnosis. Had 2 awful ER visits.  No final explanatiion! No recurrence since–4 years.   No history of radiation, though that might be the most likely for you.

Alan Moskowitz (to Everyone): 6:35 PM: Thanks John and Rick.

John Antonucci – CT (to Everyone): 6:39 PM: From my interaction checker—-prednisone decreases the effect of Provenge.  not an absolute contraindication.

AnCan – rick (to Everyone): 6:43 PM: https://doctors.umiamihealth.org/provider/Marijo+Bilusic/1900896?unified=Genitourinary%20Medical%20Oncology&sort=networks%2Crelevance&from=search-list

Alan Moskowitz (to Everyone): 6:49 PM: I have to leave, thanks everyone.

regina hoover (to Everyone): 7:00 PM: I have an early appointment so good night. gentlemen.

Sylvester Mann (to Everyone): 7:00 PM: Excellent session.  I have to leave.  Keep safe.  See you soon.

Ken (to Everyone): 7:00 PM: Sorry guys I have dinner with friends at 7:15,  got to go.  thanks Ken

Steven Nordstrom (to Everyone): 7:01 PM: Thanks, guys.  Gotta run.

Len Sierra (to Organizer(s) Only): 7:06 PM: Must go, Gents.  G’night!  Good job, Herb.

Peter Monaco (to Organizer(s) Only): 7:17 PM: Gonna run gents!

John Birch (to Everyone): 7:19 PM: Thanks everyone.  Have a good evening.

Frank Fabish – Ohio (to Everyone): 7:20 PM: Good night all. Thanks for listening. Prayers for all.

Herb Geller (to Everyone): 7:22 PM: Just found this: Adding Provenge to Xtandi, Zytiga Reduces Risk of Death by 45% in mCRPC Patients, Data Shows

Stephen Saft (to Everyone): 7:30 PM: Good Night all!

Julian Morales-Houston (to Everyone): 7:32 PM: Need to leave – Another great engaing and informative conversation! Thanks!

Gary Peters (to Everyone): 7:41 PM: I have to sign off.  Take care everyone.

David Muslin (to Everyone): 7:44 PM: Got to roll.  Great work as always

Joe Gallo (to Organizer(s) Only): 7:47 PM: MANopause

Solo Arts Heal with Elizabeth Jameson

Solo Arts Heal with Elizabeth Jameson

by | May 19, 2022 | Recent News, Solo Arts Heal

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) collaborate every 4th Wednesday of the month for Solo Arts Heal!

On April 27th, we had the pleasure of hosting Solo Arts Heal with special guest, Elizabeth Jameson!

Elizabeth Jameson is an artist, writer, and health advocate.  Since her diagnosis of multiple sclerosis, she has used medical technology to create art as a way of taking ownership of her disease. She transformed her unsettling, clinical black-and-white brain scans into work that invites others to be curious and contemplate
the beauty of the brain, and encourages conversations about what it means to live in an imperfect body. Her use of strong, vibrant colors is a way to celebrate and honor the journey of what she has had to confront—the disease of her brain—and to challenge others to question what it means to be imperfect, which is part of the universal human experience.

As her disease has progressed, her practice has evolved. She now concentrates on writing and publishing essays about illness and disability. In 2021, she created MS Confidential, a monthly web series that provides a safe space for raw and informal discussions about the chaos of daily life for people living with multiple sclerosis.

Watch the performance here:

 

To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.

AnCan’s ‘IDLE’ Howard Wolinsky hits the news!!

AnCan’s ‘IDLE’ Howard Wolinsky hits the news!!

by | Apr 21, 2022 | Prostate Cancer, Recent News, Uncategorized

AnCan’s ‘IDLE’ Howard Wolinsky hits the news!!

Going back many years, there has been debate around what is and what is not considered to be cancer. As an old-timer in the field of cancer advocacy I recall this debate ignited by UCSF breast cancer surgeon extaordinaire Dr. Lara Esserman when she spoke about IDLE in a Lancet article. IDLE stands for Indolent Lesion of Epithelial Origin.  Early blogger Mike Scott latched onto this since the concept was supported by her UCSF prostate cancer colleagues, Drs. Peter Carroll and Matthew Cooperberg. Mike’s “new” Prostate Cancer Infolink article,New Terminology, IDLE threats, and human behavior (about cancer) from May 5, 2014 is defintiely worth a read!

Fast forward 8 years, and we are back in the midst of the same debate as to whether some suspect lesions should or should not be considered cancer. And who is that at the heart of this …. none othre than our own Advisory Board member, Howard Wolinsky stirring up the pot yet again along with urologist buddy, Dr. Scott Eggener from University of Chicago. Howard and Dr. Scott got to talking and rekindled this debate as to whether calling a suspicious lesion cancer too early can result in more harm than good. Howard, for example, had a life insurance policy application rejected in 2010 becasue of his prostate cancer diagnosis that has only produced one diagnosed Gleason 3+3 lesion in multiple screenings and biopsies over almost 13 years!. Dr. Eggener was motivated to write an journal article; he leads leads an illustrious group of authors that includes Matt Cooperberg … and of course Howard representing the patient voice in a controversial piece that appears in ASCO’s Journal of Clinical Oncology this month titled Low Grade Prostate Cancer: Time to Stop Calling It Cancer Low Grade PCa – not cancer HW JCO 0422 .

While Dr. Cooperberg maintains his opinion, Peter Carroll may no longer wholly endorse that view. He and another of our Advisory Board members, Dr. Jonathan Epstein, are preparing rebuttals. Another well respected medical professional went as far as to say privately,”Unfortunately I really struggle with this. Why do we need to infantilize patients. We don’t call metastatic cancer the ‘monster'” There are definitley two sides to the coin ….. from the anxiety the ‘C-word’ provokes and repurcussions that Howard found out can be financial; to failing to properly acknowledge the gravity and treatment of precancerous lesions medically and otherwise.

Read the Chicago Sun Times report here; and Howard Wolinsky’s own take posted on his blog here. To see Howard and Scott Eggener speak about this yourself, listen to them on Chicago NBC news ….  then you decide!!

Breaking News: AnCan Partners with the Modern Medicaid Alliance

Breaking News: AnCan Partners with the Modern Medicaid Alliance

by | Apr 19, 2022 | Advocacy, Recent News

AnCan is proud to announce that we recently joined the Modern Medicaid Alliance, a partnership
between Americans who value Medicaid and leading advocacy organizations. We look forward to
working with the Alliance to educate policymakers and the public about the benefits and value of
Medicaid.

As part of our partnership with the Modern Medicaid Alliance, we will be highlighting the diverse
populations that depend on Medicaid for their health and financial security. Medicaid covers about
1 in 5 Americans, including millions of children, older adults, people with disabilities, and 2million

veterans. Medicaid provides an essential safety net for when Americans need it, providing high-
quality, cost-effective care to more than 73 million people nationwide.

We join the Modern Medicaid Alliance at a critical time. While policymakers debate changes to
Medicaid, the program is enjoying widespread support from Americans. In fact, recent polling
found that 86% of Americans want a strong, sustainable Medicaid program – and fewer than 20%
of Americans support cutting Medicaid funding.

AnCan is particularly interested in furthering Medicaid expansion in all States in order to
promote health equity. Indeed, providing mental health services to veterans and to all those
enduring chronic conditions is an urgent need.

 

See the full release by clicking here.

Special Presentation: Prostate Cancer and Treatment Regret

Special Presentation: Prostate Cancer and Treatment Regret

by | Apr 18, 2022 | Prostate Cancer, Webinars

In April, we had Dr. Christopher Wallis (Assistant Professor of Urology, Department of Surgery, University of Toronto and Urologic Oncologist) give a talk to our AS group titled “Prostate Cancer and Treatment Regret”, a common phenomenon patients experience after making their choices for treating their prostate cancers.

Dr. Wallis found in his research that about 13% of patients with localized disease overall have second thoughts about their choices. This includes patients on active surveillance. The surgical group had the most reset followed by radiation and AS.

“Every choice has risks and benefits. The goal isn’t just to cure the disease but to live a better quality of life” Wallis said.

He said that in counseling patients, one of his challenges is that there is not “a perfect correlation between symptoms and disease.” In other words, some patients are OK with losing their sexual potency—a major concern—while others are devastated. Some have similar reactions to incontinence. “Patient-centered care improves outcomes,” he observed. Walis said long-term, “financial toxicity” from treatment also is a largely unexplored topic.

Watch this presentation here:

 

Slides will be posted when available.

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.