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 22, in honor of Pride month, we were happy to have Jesus Guillen join us.
Jesus is Your Singing Advocate and founder of the HIV Long Term Survivors international network. A 37-year HIV long term survivor, Jesus is part of the first generation growing older with HIV, living with chronic pain, but still a very creative individual. The focus of his work during the last years has been on aging, chronic pain, HIV, mental health, coping skills, and cultural awareness, always with the strong background of his personal journey as an immigrant and being a member of the LGBTQI family. He is also an international speaker and a bilingual/bicultural Latino activist.
Watch the performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
“Sally Torgeson explains the help a myeloma coach can help newly diagnosed patients with [including] the vast array of information, emotional, and financial demands of this type of blood cancer.”
She was diagnosed in 2018, and is a Myeloma Coach with the Myeloma Crowd.
The beginnings of a new diagnosis can be troubling, confusing, heartbreaking – the list goes on. A new diagnosis like this is a lot to take in, to say the least. Multiple Myeloma patients can feel isolated, especially as this disease is considered rare. Suddenly you have a bajillion tons of information thrown at you from your doctor’s visits.
“All Myeloma Coaches are patients or care partners who assist newly diagnosed patients with multiple myeloma or their caregivers.”
Read Sally Torgeson’s article here to learn a little bit more about what a myeloma coach is and how a myeloma coach can help you navigate all of your new life’s aspects.
Special Note: Our long awaited recording from Jake’s memorial service is finally here. An incredible tribute for a beautiful life. Jake is dearly missed here at AnCan, and always will be. We could never thank him enough for all he gave to us. Thank you to John Teisberg and The Reluctant Brotherhood for the recording. We love you, Jake.
This project is so easy, AND fun. Plus you don’t need much.
What you will need:
Paper (any kind will work)
Markers (again, any kind at all) – Or just something to draw with. Crayons, colored pencils, or just a black sharpie!
…and that’s it! (we promise)
Watch this here:
Funding for this project was provided by the HealtheVoices Impact Fund at the Community Foundation of New Jersey, which was funded by a contribution from Janssen Pharmaceuticals, Inc.
Would you like your art featured in the AnCan Art Gallery? please email me at alexa (at) ancan.org!
To SIGN UP for any of our AnCan Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 20, 2022
Register for our upcoming webinar on June 29 on Genetics & Genomics at https://bit.ly/3QiNvxS
If you’re a Vet, AnCan will be launching a new Vets Group to help navigate medical care. First meeting Thu, June 23, at 8.00 pm Eastern in https://www.gotomeet.me/AnswerCancer. Free and drop-in as always!
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: We bookend this Group Session recalling our dear buddy and LEGEND advocate, Jerry Deans, who died last week (rd)
Topics Discussed
Consider rechallenging germline BRCA with a PARP-I; Next Generation Sequencing options; RT v HT for BCR … when you’ve been radiated 3x already; Peter K’s a rare bird, says Dr. Antonarakis – time for pembro!; Provenge follows Pluvicto; get the FAMILY germline BRCA tested; rd updates us on therapeutic radionuclides; Gary P expreses gratitude on behalf of single men; BCR points to recent SSPORT protocol; Dr. E switches HT protocol for this gent – to make Burning Man an easier trip!
Chat Log (OMG – were you Gent’s quiet this week or what??)
AnCan – rick (to Everyone): 5:10 PM: jturner@flinceresearch.com
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 14, 2022
Register for our upcoming webinar on June 29 on Genetics & Genomics at https://bit.ly/3QiNvxS
If you’re a Vet, AnCan will be launching a new Vets Group to help navigate medical care. First meeting Thu, June 23, at 8.00 pm Eastern in https://www.gotomeet.me/AnswerCancer. Free and drop-in as always!
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: Long term survival with metastatic PCa is this week’s recurring theme (rd)
Topics Discussed
Newbie joins us with Lynch Syndrome; anti-PD1 immuno side effects, MSI – and the swab test for sensitivity; darolutamide monotherapy; brain fog from HT; lung nodules ID’d as PCa; stable, long-trm survivor; supporting non-particpants; care partners extend survival; when’s the right time for Pluvicto?; BIG Pluvicto success
Chat Log
AnCan – rick (to Everyone): 3:09 PM: Peter – I spoke with Alexa today about saving the chat. Evidently it depends on how you join. She will provide an explanation and directions in all our future emails.
George Rovder Arlington VA (to Everyone): 3:41 PM: Thank you Jeff Marchi. I appreciate it and will check it out. George
Len Sierra (to Everyone): 3:49 PM: https://miradx.com/imudx-testing/ The Keytruda test: IMUDX swab test ImuDx Testing Populations Patients with any type of cancer who are being considered for anti-PD1 or anti-PDL1 therapy are eligible for testing. This test predicts the risk of developing immune related adverse events in response to anti-PD1 or anti-PDL1 treatment.
Herb Geller (to Everyone): 3:50 PM: Cardiac toxicity from checkpoing therapy can range from asymptomatic troponin-I elevations to conduction abnormalities of the heart and even fulminant myocarditis. Although rare, myocarditis is a potentially fatal adverse effect of ICI therapy.
George Rovder Arlington VA (to Everyone): 3:54 PM: Thank you all, friends, for the wisdom and kindness. I have to leave early this evening. I will watch the video to see and hear the rest of the discussion. George
Julian Morales – Houston (to Everyone): 3:58 PM: Have to leave, have a conflicting meeting at 6pm.
Ben Nathanson (to Everyone): 4:00 PM: @Richard – ODENZA: A French prospective, randomized, open-label, multicenter, cross-over phase II trial of preference between darolutamide and enzalutamide in men with asymptomatic or mildly symptomatic metastatic castrate-resistant prostate cancer (CRPC) https://meetings.asco.org/abstracts-presentations/201628
Pat Martin (to Everyone): 4:00 PM: Thanks for the info and the links
George A Southiere Jr (to Everyone): 4:04 PM: very correct that most of us have been on multiple treatments that cause”brain fog”would be very difficult to discern. Be very skeptical of Pharmaceutical studies
John Antonucci (to Everyone): 4:08 PM: I just tried to find any paper on monotherapy androgen blockers and came up with zilch
Thomas Jacobsen – CO (to Everyone): 4:43 PM: Have to leave. Thank you everyone.
Russ Strehlow (to Everyone): 4:46 PM: I have to leave also. Thank you
George A Southiere Jr (to Everyone): 4:50 PM: Great meeting everyone, gotta go. Be well all
Richard Wassersug (to Everyone): 5:00 PM: Thank you all. Have to go.
Herb Geller (to Everyone): 5:00 PM: I gotta go as well. See you all next week.
David Muslin (to Everyone): 5:01 PM: Great meeting as always. See you men next Monday night.
At AnCan, we recognize that many are in crisis right now.
We want you to know that we stand with you, that you are not alone, and there is help.
View the phone numbers below, or visit suicide.org for more resources and hotlines, including other countries, veterans, LGBTQ+, teens, texting, and in multiple languages.
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: Prostate Cancer can occur in the testes!! And plenty of Provenge(rd)
Topics Discussed– long session this week with 2 newbies and 12 folks needing time!
Recurrent PCa does not respond to intermittent cycles; confined recurrence of focally treated high risk PCa; keeping the cancer offguard; Provenge – 2nd time today and not the last; IHT starting; Dr. E prescribes Pluvicto; Trimix experience; darolutamide beter than enz; remembering Hawaian Bob Smith; peritoneal implants (lesions) return; testicualr PCa lesion; UCLA refunds PSMA cost; lo-dose abi with food; pros & cons of self-cathetering; when to move on from chemo; morning fatigue and adjusting darolutamide dose; Provenge tips – again/finally!
Stephen Saft (to Everyone): 6:34 PM: I am going to say goodnight. Thanks
Joe Gallo (to Everyone): 6:43 PM: Vets interested can send me an email or drop in. Joeg@ancan.org
John Birch (to Everyone): 6:58 PM: Need to sign off, appreciate the discusssions tonight.
Frank Fabish – Ohio (to Everyone): 7:04 PM: thanks guys allowing me to give an update. Can’t make it next Tuesday.
Pat Martin (to Everyone): 7:07 PM: I’ll catch you next Tuesday. Good meeting
Mike Yancey (to Everyone): 7:15 PM: Got an early morning, so need to drop before we complete tonite. Lots of good discussion.
Julian Morales – Houston (to Everyone): 7:26 PM: need to drop off – another great meeting, Glad to be able to relate my experience to this community. All the best to everyone!
On June 1st, we had the pleasure of world renowned Dr. Steven Kaplan speaking to our Active Surveillance Prostate Cancer virtual support group, in collaboration with ASPI, titled “It Ain’t Your Grandpa’s BPH – An ‘Urgent’ Issue“.
Dr. Kaplan is Director of the Men’s Wellness Program, Mount Sinai Health System and Professor, Icahn School of Medicine at Mount Sinai. He is an internationally renowned authority and one of the primary thought leaders in the study of benign diseases, the association of metabolic factors with voiding dysfunction, and female urology, with symptoms related to both benign prostate enlargement and bladder function.
Dr. Kaplan is a Diplomat of the American Board of Urology and a Fellow of the American College of Surgeons. He is an internationally recognized authority and one of the primary thought leaders in the study of benign diseases of the prostate, the association of metabolic factors and voiding dysfunction and female urology. He has over 1000 publications including 600 peer reviewed and 570 peer reviewed invited articles, and 90 book chapters and non – peered reviewed articles. His landmark study, published in JAMA in 2006, changed the way medications are used in the treatment of men with symptoms related to both benign prostate enlargement and bladder dysfunction.
You’ll hear about the latest advancements in BPH, how diet and sleep can impact your prostate (and overall) health, and more.
Watch here:
Special thanks to Pfizer and Bayer for sponsoring this presentation
We apologize for the inconvenience, but slides for this presentation are not available.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
On May 31st, we hosted a webinar full of great information for not just prostate cancer patients, but for all! Titled “Optimizing Sleep, Exercise, and Nutrition in Prostate Cancer“, we learned best practices for the foods we eat, to how sleep apnea can impact our whole health.
The program features Dr. Stacy Loeb, professor of Urology and Population Health at the New York University School of Medicine and the Manhattan Veterans Affairs Medical Center, and Dr. Justin Gregg, Assistant Professor of Urology and Health Disparities Research at UT MD Anderson Cancer Center, of UT MD Anderson Cancer Center in Houston. Dr. Gregg discusses his research on diet. Dr. Loeb discusses her research on a plant-based diet, sleep, and exercise.
Watch here:
Editor’s Note: Dr. Stacy Loeb and colleagues at NYU Langone Health are doing a research study about sleep and lifestyle for men with prostate cancer and their partners and/or family members. Participation involves visiting a website designed by the study team with recommendations about sleep, nutrition and exercise, completing online surveys, wearing a wrist watch to measure activity for a total of two weeks, visiting a website, and two telephone calls with the study team. Gift cards will be provided as reimbursement for study completion.
From Conquer Magazine’s Sally Torgeson:
