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.
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 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.
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!
Non-Medical switching ….. know what we’re talking about?
In the patient advocacy world, Non-Medical Switching has been a major topic this year.
Non-Medical switching happens when the insurance provider forces a switch to an alternate medication, usually less expensive, to the one your health care provider prescribed. In certain HMO’s, it may actually be your HCP who switches or prescribes a less than optimal drug. AnCan sees this frequently with Kaiser Permanente.
The switched medication frequently may not work as well. For some conditions that can be devastating … for example with mood stabilizers prescribed for mental health care. A recent survey by the Alliance for Mental Heath Care Access (AMHCA) showed that 40% of patients taking medication to maintain stable mental health did worse when switched. Consequnces can be tragic.
In March, I was in Washinton DC to lobby for the American Urology Association. Switching was one of our talking points with Federal legislators. AnCan also partners with the Alliance for Patient Access (AfPA), a parent organization to AMHCA. With Mental Health Awareness Month coming up, they have just published an attention-grabbing report addressing medcial switching. Read it at https://instituteforpatientaccess.org/non-medical-switching-pushes-patients-to-the-brink/
AnCan continues to advocate on behalf of all our patients. We take Mental Health programming very seriously and now offer 5 related programs:
In the patient advocacy world, Non-Medical Switching has been a major topic this year.