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!
Our guest for September was one of our very own – Hannah Garrison!
Hannah, who lives with multiple sclerosis (MS), took a blank canvas and created a piece of visual art throughout the show as she is interviewed by Rick Davis, with questions from the audience.
San Antonio, Texas-based artist Hannah received her Bachelor of Fine Arts from the University of Texas at San Antonio in 2014. Undiagnosed symptoms of MS started creeping into her life, resulting in a few tumultuous years. Her symptoms accelerated in severity in the spring of 2017; that summer she received her diagnosis. An identity crisis ensued, and she found that using the arts as meditation and therapy helped her to not only heal but also to become a better caregiver.
Being honest about her diagnosis to complete strangers was not only effective medicine for her but for them as well. She now teaches visual arts to those who are chronically ill—to those living with cancer, MS, and more. Inside hospitals, she creates large window paintings for patients at their bedside and has witnessed the life-changing effects of art combined with an empathetic ear. She teaches AnCan’s virtual arts classes and has been virtually teaching the arts through various other organizations since 2020, during the height of the pandemic.
Watch here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 3, 2022
Dr. John jumps in with two feet for his debut … and floats beautifully!
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Best comes late – beware of SELF-MEDICATING; and is a clinical trial preferable to Standard of Care? (rd)
Topics Discussed
John Birch dies – tribute next week; urinary block leads to posible denovo Mx Dx; bladder and bowel control during RT; Jevtana produces bloating; tamoxifen to address gynacomastia; dropping LHRH in daro monotherapy to address fatigue; Pluvicto preferred to CAR-T trial; switching QBs confuses decision; beware of self medicating; similarly, different man – Dr. A endorses self medication decision; should a PSMA be obtained at 0.38; clinical trial offered in lieu of SoC
Chat Log
Pat Martin (to Everyone): 5:06 PM: Thanks much. I’ll have my second infusion next Friday, so I’ll be looking out for it. Thanks
Joe Gallo (to Organizer(s) Only): 5:38 PM: PSMA is much more detailed than CT and Bone scans Although very desirable Brachy (boost) w IMRTmany RadOnc dont have experience Sometimes it is good to vent
Frank Fabish – Columbus OH (to Everyone): 6:01 PM: Got to leave early. Thanks guys. see you next week.
Joe Gallo (to Everyone): 6:30 PM: Just checked. treatment to prevent gynecomastia 3 sessions radiation 12 Gy total
Mark Finn (to Everyone): 6:34 PM: got to go. Thanks for conversation.
Julian Morales – Houston (to Everyone): 6:46 PM: I see Dr E and she will engage you fully as well as monitor your condition as well as your blood work. I did go to other places but glad I found Dr. E!!!
Bob G. Philadelphia (to Everyone): 7:00 PM: Enzalutamide has 6 – 8 day half life; maybe moving right from Enza to Darolutamide, still have effects of Enza to contend with.
Harry (to Everyone): 7:00 PM: gotta go everyone. thanks for the feedback
Julian Morales – Houston (to Everyone): 7:01 PM: Need to leave. Thanks guys for another great session. see you next week. Buenos noches!
Alan Moskowitz – NJ (to Everyone): 7:01 PM: bye all
Jerry Pelfrey (to Everyone): 7:03 PM: have to leave computer is dying.
Mike Yancey-Oklahoma (to Everyone): 7:04 PM: Gotta run; early appointment tomorrow
Len Sierra (to Organizer(s) Only): 7:12 PM: Definitely.
Thomas Jacobsen – CO (to Everyone): 7:18 PM: Gotta go. Thanks to everyone for your feedback and patience with the conversation.
Bob G. Philadelphia (to Everyone): 7:26 PM: Time to go. Thanks & see you all next week. Be well.
George Rovder, Arlington Virginia (to Everyone): 7:30 PM: Thank you all. Good night.
Our hearts are with Florida and Puerto Rico as two hurricanes hit the same general area in less than two weeks. Puerto Rico is still reeling from the devastation caused by Cat 5 Hurricane Maria only a few years ago. Fiona, a Cat 4 hurricane, only left the area less than a week ago.
As Hurricane Ian continues its rampage in Florida, AnCan would like to send our heartfelt sympathies to anyone and everyone affected by both of these storms.
Millions of people are in need of immediate assistance – whether that’s in the form of water. food, rescue efforts, medical supplies, and so much more.
Whether or not you have family members and friends impacted by one or both hurricanes, we want to provide a list of some organizations you can donate to. Please consider helping in any way you can.
Hurricane Ian makes its way to the Carolinas next; We’ll update this list as needed.
Good360 Provides critical need items, such as water, blankets, tarps, and much more, for both short term and long term recovery needs
Team Rubicon Unites the skills and experiences of US Veterans with first responders and other hands-on professionals. Their mission includes relief before AND after a disaster
Convoy of Hope Assists residents with immediate needs for food and water. You can even volunteer to build critically important kits that will be given to those in disaster zones
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 27, 2022
Our Sept. 28 Solo Arts Heal will feature AnCan arts instructor Hannah Garrison — she’ll paint on a canvas while she’s being interviewed on how she’s used her art to heal herself and heal others — should be a great show. The recording will be available afterward on our Solo Arts Heal page.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Under-60 newcomer looks for views on triplet therapy after bad advice from urologist sees PSA jump from 2 to 15 to 33 to 111. (bn)
Topics discussed
Passing of AnCan participant Steve Saft; 53-year-old newcomer with small prostate tumor but widespread mets asks about triplet therapy; good news marks 3rd year of treatment; first Keytruda infusion goes smoothly; after years on darolutamide the pills are now “like lead sinkers”; feeling good on Orgovix and flying to meet Dr. E; check for up-to-date radiation technology before treatment; how much radiation for gynocomastia?; heavy rectal bleeding a year after therapy; 6th Pluvicto complete, rechallenge later?; PSMA avidity unclear — try Axumin?
Chat Log
AnCan – rick (to Organizer(s) Only): 6:03 PM: Len – John Madden is the guy we missed last week. I expect you realized.
Len Sierra (to Organizer(s) Only): 6:04 PM: yep
Joe Gallo (to Organizer(s) Only): 6:07 PM: I have to leave at 7 for a 50 Vets meeting
George Rovder, Arlington VA (to Everyone): 6:13 PM: https://obits.levinefuneral.com/stephen-r-saft-saft
Jim Ward (to Everyone): 6:15 PM: Could someone please spell Steve’s last name?
Joe Gallo (to Organizer(s) Only): 6:39 PM: Except for 2 days before PSA
AnCan – rick (to Everyone): 6:42 PM: https://www.houstonmethodist.org/doctor/eleni-efstathiou/?inm=vfad Dr. Eleni Efsathiou
Dennis Correia (to Everyone): 6:49 PM: A Dexa scan for bone density should also be considered.
Joe Gallo (to Organizer(s) Only): 6:56 PM: Off to the Vets.
John Madden (Hou) (to Everyone): 7:01 PM: Kwon (chemo 1st followed by 2nd gen) https://youtu.be/IEToOBuca1Q?t=652
TonyFig – NYS (to Everyone): 7:04 PM: There was some discussion about nutrient interaction with drugs. Here is a data base link as a tool to search potential interactions. I check it prior to using any vitamins/minerals/supplements against any prescribed drugs http://naturaldatabaseconsumer.therapeuticresearch.com/nd/Search.aspx?cs=KAISER~CEPDA&s=NDC&rli=1&ufpl=1
Ravi (to Everyone): 7:04 PM: so is there an interaction between keytruda and darulatamide
TonyFig – NYS (to Everyone): 7:18 PM: Under what general guidelines would triple therapy be suggested.
Peter Kafka – MN (to Everyone): 7:20 PM: No interaction btwn Daroludamide and Keytruda that I am aware of. I am being treated at the moment at the Univ. of MN and they are pretty thorogh
Herbert Geller (to Everyone): 7:22 PM: The ARASENS and PEACE-1 trials supported the use of triple therapy in newly diagnosed hormone-sensitive disease:
Smith MR, Hussain M, Saad F, Fizazi K, Sternberg CN, Crawford ED, Kopyltsov E, Park CH, Alekseev B, Montesa-Pino Á, Ye D, Parnis F, Cruz F, Tammela TLJ, Suzuki H, Utriainen T, Fu C, Uemura M, Méndez-Vidal MJ, Maughan BL, Joensuu H, Thiele S, Li R, Kuss I, Tombal B; ARASENS Trial Investigators. Darolutamide and Survival in Metastatic, Hormone-Sensitive Prostate Cancer. N Engl J Med. 2022 Mar 24;386(12):1132-1142. doi: 10.1056/NEJMoa2119115. Epub 2022 Feb 17. PMID: 35179323.
Herbert Geller (to Everyone): 7:23 PM: Fizazi K, Foulon S, Carles J, Roubaud G, McDermott R, Fléchon A, Tombal B, Supiot S, Berthold D, Ronchin P, Kacso G, Gravis G, Calabro F, Berdah JF, Hasbini A, Silva M, Thiery-Vuillemin A, Latorzeff I, Mourey L, Laguerre B, Abadie-Lacourtoisie S, Martin E, El Kouri C, Escande A, Rosello A, Magne N, Schlurmann F, Priou F, Chand-Fouche ME, Freixa SV, Jamaluddin M, Rieger I, Bossi A; PEACE-1 investigators. Abiraterone plus prednisone added to androgen deprivation therapy and docetaxel in de novo metastatic castration-sensitive prostate cancer (PEACE-1): a multicentre, open-label, randomised, phase 3 study with a 2 × 2 factorial design. Lancet. 2022 Apr 30;399(10336):1695-1707. doi: 10.1016/S0140-6736(22)00367-1. Epub 2022 Apr 8. PMID: 35405085.
Ravi (to Everyone): 7:32 PM: There was a researcher who actually spoke to this group about using estrogen
AnCan – rick (to Everyone): 7:33 PM: Webinar w. Wassersug https://ancan.org/estrogen-based-hormone-therapy-treating-prostate-cancer/
Herbert Geller (to Everyone): 7:34 PM: Tamoxifen — Tamoxifen can be taken along with the hormonal anti-prostate cancer treatment (androgen deprivation or antiandrogen monotherapy). Tamoxifen must be taken every day for the duration of antiandrogen treatment. In one study, only 8 percent of men who took an antiandrogen plus tamoxifen developed gynecomastia (compared with 68 percent of men who took the antiandrogen alone) [2].
Herbert Geller (to Everyone): 7:35 PM: Gynecomastia that has already developed can be treated with higher radiation doses and may improve pain. However, when given after breasts have already developed, radiation is not very effective at reducing breast size.
Alan Babcock (to Everyone): 7:50 PM: I must go. See y’all next week.
AnCan – rick (to Organizer(s) Only): 7:53 PM: You have until 5.15 Len
Len Sierra (to Organizer(s) Only): 7:54 PM: Oh, ok, I thought we had to quit by 5pm
Frank Fabish – Columbus OH (to Everyone): 7:55 PM: Got to go guys. Great conversations. RIP Steven.
AnCan – rick (to Organizer(s) Only): 7:55 PM: The next group starts at 5.30 pm
AnCan – rick (to Organizer(s) Only): 8:01 PM: Same lab??
Peter Kafka – MN (to Everyone): 8:02 PM: psma scan?
AnCan – rick (to Everyone): 8:03 PM: D. Jack does not show on PSMA …. we don’t know if he’s avid
Norm Pollock (to Everyone): 8:07 PM: can you spell that scan
John Madden (Hou) (to Everyone): 8:07 PM: Mei saw this article, super early, isn’t even peer-reviewed yet, but this guy claims to be working on a test materially more accurate than psma, ..looks promising but probably pretty far off: https://www.eurekalert.org/news-releases/947867
Len Sierra (to Everyone): 8:08 PM: Norm, I think you want the spelling of Axumin.
Norm Pollock (to Everyone): 8:08 PM: thanks
Herbert Geller (to Organizer(s) Only): 8:09 PM: Sorry guys, gotta eat. See you next week.
Herbert Geller (to Everyone): 8:10 PM: See you next week.
David Muslin (to Everyone): 8:10 PM: Got to go men. See you next Monday
Jeff Wood (to Everyone): 8:12 PM: Got to go, goodnight
Julian Morales – Houston (to Everyone): 8:13 PM: see you guys next week!
AnCan – rick (to Everyone): 8:14 PM: https://ramparthealth.com
Peter Kafka – MN (to Everyone): 8:15 PM: Good night. Good meeting Len.
Jack (to Everyone): 8:19 PM: Www.clinicaltrials.gov/ct2/show/NCT04713371
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 19, 2022
Are you a Vet ? – Join AnCan’s new Vet’s group to help best navigate your healthcare. It’s not about your disease – it’s about getting the best care, bennies and allowances. So please invite other Vets and Care Partners – no matter gender, condtion, or where they get care. Read more at https://ancan.org/veterans/ . Next meeting Thu, Sep 22 , free, drop-in – https://www.gotomeet.me/AnswerCancer
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Mental health is much on AnCan’s mind right now. It’s highlighted this week by the anxiety suffered by an older gent. (rd)
Topics Discussed
Possible recurrence needs more skilled provider; denovo Mx w. no primary inervention requires a GU med onc; early report post testicualr surgery; short report on NY conference; PIK3CA; MSI-H makes gent a candidate for Keytruda; Gen. Joel needs a new QB; mice and purple tomatoes; treating gynacomastia but how much RT??; slow, creeping PSA gives rise to anxiety in older gent; is spinal pain cancer, asks long term, younger Mx gent?; Pluvicto only holds so what’s next – Jevtana?
Chat Log
Jeff Marchi, San Francisco (Private): 5:07 PM: my brother gene has been given Casodex 2 days before his first Lupron shot. isn’t 14 days the standard?
AnCan – rick (to Jeff Marchi, San Francisco): 5:10 PM: 10-15 days
Jeff Marchi, San Francisco (Private): 5:11 PM: thanks
Herbert Geller (to Everyone): 5:20 PM: Genitourinary Medical Oncologist They deal with prostate, bladder, etc.
Joe Gallo (to Organizer(s) Only): 5:21 PM: Should have had an MRI for a targeted rather than a standard BX.
Len Sierra (to Organizer(s) Only): 5:22 PM: True, Joe.
Pat Martin (to Everyone): 5:25 PM: Genetic testing?
Len Sierra (to Organizer(s) Only): 5:26 PM: This is unbelievable. At the UT website for GU oncology this is what they say: Our team treats the following conditions: (Hint – No mention of Prostate Cancer) Bladder Kidney Penis Testis Ureter Urethra
Herbert Geller (to Organizer(s) Only): 5:26 PM: Great!
George Rovder, Arlington VA (to Everyone): 6:36 PM: https://www.inova.org/doctors/jeanny-b-aragon-ching-md
Mike Yancey (to Organizer(s) Only): 6:44 PM: Early morning doc appointment, so gotta run. Thanks for another great call and discussion AnCan – rick (to George Rovder, Arlington VA): 6:45 PM: If I had to see a doc at Innova, it would be her. George Rovder, Arlington VA (to Everyone): 6:46 PM: Thanks Rick. Good if it’s a go with Dr. E. If not she’s local and more experienced than Joshua Allen. AnCan – rick (to George Rovder, Arlington VA): 6:46 PM: It’s always tough to switch docs within a practice. George Rovder, Arlington VA (Private): 6:47 PM: Of course. Richard Cramond – Oakton, VA (to Everyone): 7:06 PM: I have to go David Muslin (to Everyone): 7:16 PM: What about Dr. O? Julian Morales – Houston (to Everyone): 7:16 PM: Need to drop off. These discussions are only getting better!!! Ben Nathanson (to Organizer(s) Only): 7:18 PM: Sorry, must go — see you all next week Joe Gallo (to Everyone): 7:21 PM: David. 3 sessions 12Gy Mark Thompson (to Everyone): 7:38 PM: Thank you all. George Rovder, Arlington VA (to Everyone): 7:39 PM: Happy New Year. George Rovder, Arlington VA (to Everyone): 7:39 PM: Thanks to all.
Summer of Art – September 15th Class – Oil Pastels
On September 15th, Hannah Garrison (Artist, MS activist, and moderator for our MS virtual support group) brought her magic back to AnCan. We made different types of Owls with oil pastels, and in keeping true to the education part in our tagline (Advocacy Support Education), we learned a lot about Owls. You can click here to learn some of the facts we went over! We encourage you to name your owl, and make it as colorful as you’d like!
What you will need:
Oil Pastels
Paper
Pastel Blender
Paper Towel/Napkin
Watch the class 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, Sep 13, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: No Provenge with autoimmune disease — but how about vitiligo? Dr. Larry Fong himself weighs in. (bn)
Topics Discussed
Hyperbaric chamber for radiation cystitis; docs inadequately warn gay man of prostatectomy side effects; years after prostatectomy, incontinence reappears; Provenge OK with vitiligo?; fourth and worst-yet chemo; dehydration to avoid leakage backfires at radiation simulation; avoiding leakage at work; expanded access to end for Pluvicto — no more free drug; which Medicare plan?; paused Keytruda treatments back on track; dehydration makes liquid biopsy fail; message from Dr. Larry Fong: no known Provenge problem with vitiligo
Len Sierra (to Everyone): 6:32 PM: Climacturia after definitive treatment of prostate cancerResults: Overall 412 surveys were returned and available for analysis, and of these respondents 75.2% were sexually active or experiencing orgasms. Climacturia was reported by 22.6% of these respondents, and by 28.3%, 5.2% and 28.6% of those treated with surgery, radiation, or both, respectively (p <0.001).
Bob McHugh (to Everyone): 6:37 PM: Had a Pylarify scan in May at 0.5.Showed three very small lesions which we treated with five rounds of Tomotherapy.
Bob McHugh (to Everyone): 6:40 PM: Very candidly, I haven’t had a erection since my surgery in 2015. My girlfriend said, “Bob, I don’t care if you ever have an erection again.” Changed my life!
John Antonucci–CT (to Everyone): 6:40 PM: Nothing better than a supportive partner, huh?
Julian Morales – Houston (to Everyone): 6:41 PM: you got that right Dr John
Julian Morales – Houston (to Everyone): 6:51 PM: The file will start with ChatLog Ancan Barniskis Room followed with the date of the meeting. It is an RTF file.
Bob McHugh (to Everyone): 7:16 PM: My surgeon gave me a lidocane cream. HJelpful.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Sep 5, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month 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: Great input this week from Advisory Board Member, Richard Wassersug PhD. And right at he end – maybe a touch of African Waterways – ‘De Nile’! (rd)
Topics Discussed
Stick or twist on RT for longtime recurrent older Gent; a similar Peer Survivor comments; man with cribriform intraductal faces immediate recurrence; starting Prolia; leg pains from ADT; Theraworx; looking at IHT; steady as she goes; MSI-H man asks about Immunex test; abi added to treatment but maybe daro would work; is Clinical Trial failing or succeeding?; aggressive disease recurs on Pylarify 3yrs after Tx ends – but man asks if it’s a false positive.
Chat Log
Richard Wassersug (to Everyone): 5:18 PM: Or there were only 6 cores taken
JEFFERSON DURYEE (to Everyone): 7:00 PM: OP GU PROSTATE STUDY IGUP20133 ETRUMADENT ZIMBERELIMAB DOCETAXEL PETER JAY VAN VELDHUIZEN,MD MY CURRENT CLINICAL TRIAL TEN MONTHS THEY ADDED 3 MORE MONTHS YR OLD ORCHIECTOMY A YR A GO PSA HAS RISEN TO 7.006 TESTERONE LESS THAN 5*
Frank Fabish – Columbus OH (to Everyone): 7:04 PM: Got to go guys. Thanks for listening.
Thomas Jacobsen – CO (to Everyone): 7:05 PM: Thanks everyone. Gotta go.
Julian Morales – Houston (to Everyone): 7:07 PM: Have to drop. Another great discussion. Glad I could contribute! See you next week!
Richard Wassersug (to Everyone): 7:23 PM: Sorry all. I have to go.
Bob G. Philadelphia (to Everyone): 7:25 PM: Time for me to go. Thanks.
Ben Nathanson (to Everyone): 7:27 PM: Good night, George – good to see you again
George Rovder Arlington VA (to Everyone): 7:27 PM: Good night friends. Stay well.
JEFFERSON DURYEE (Private): 7:31 PM: TY AND GOOD NIGHT
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!
Our guest for August was William Wonders III.
William grew up in Brooklyn, NY. He attended Nyack College from 1998-2001. William secretly began writing and shooting video during this time. It all came to a head in 2009 when William decided to enroll at New York Film Academy in Manhattan, NY. He did this after starting an afterschool program to teach film and video to at risk youth. William has directed a number of short films.
His short film, “Fear Itself”, premiered in Florida, California, Mexico, Atlanta and New Jersey film festivals. William owns his own production company, so he can write and produce films, inspiring everyone that sees them. William’s latest project “Fixing Grandma” has been picked up by Amazon Prime. William is currently working on documentary about the current state of health of Black Men in America.
William presented an original piece about the paradigm shift he went through to produce content that addresses the disparities in the health of the black community.
Watch here:
Special thanks to John Ivory for filling in for Rick Davis. We appreciate you!
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
On August 31st, we had an incredible webinar tilted Mental Health and Multiple Sclerosis. Featuring Dr. Lauren Strober (Senior research scientist in the Center for Neuropsychology & Neuroscience Research at Kessler Foundation and assistant professor of Physical Medicine & Rehabilitation at Rutgers University New Jersey Medical School), Carly Podzikowski, and Kim Stroeh for tips and tricks on how to “feel” through the emotions that come and go with the crazy ride that is Multiple Sclerosis.
You might even feel like you’re always getting a “new normal”. Sometimes it can feel like a wild roller coaster ride if you’re not prepared. Let us offer a little guidance on how to go with the flow and how to change course when you need to. We’ll be talking about emotions and grief throughout different stages of an MS diagnosis – whether you were just diagnosed last week or last decade (and beyond!).
Learning how to deal with all aspects of this illness is a challenge, but we’ll walk you through some adaptive strategies.
