Webinar: Managing Your Medical Team

Webinar: Managing Your Medical Team

On August 31st, we had the utmost pleasure having an all-star line up of wonderful health care members of all different specialties to come together and discuss being part of a team, including how patients and care partners can work together!

 

With the wonderful Dr. BJ Miller (Palliative Care specialist, Co-founder Mettle Health, and AnCan Advisory Board Member) who you may know from his multi-million viewed TED Talk and Netflix documentary End Gamemoderated the conversation.

 

On our panel we had Ladybird Morgan, RN, MSW (Mettle Health, executive director and co-founder Humane Prison Hospice Project), Dr. Aaron Boster (Neurologist, MS expert, The Boster Center for Multiple Sclerosis), Dr. Pamela Munster (Oncologist, UCSF Helen Diller Family Comprehensive Cancer Center), and Karen Schanche, LCSW (psychotherapist).

 

You’ll hear open and honest dialogue, and great answers to questions from our audience.

 

Watch this amazing webinar here:

 

Special thanks to Myovant Sciences – Pfizer and Foundation Medicine for sponsoring this webinar.

 

 

For information on our peer-led video chat 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.

Solo Arts Heal with Shelby Hofer

Solo Arts Heal with Shelby Hofer

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 August 25th, we had Shelby Hofer!

 

Shelby is an award-winning actress, writer and director, and the Co-director of Atlanta-based PushPush Arts (formerly PushPush Film & Theater) where she develops distinctive opportunities for artists to take risks, explore new ideas and collaborate. In addition to her noted stage and film work at PushPush, she has appeared on many stages locally, nationally, and internationally. In Atlanta, her many stage performances include seven productions at Horizon Theater, including the critically acclaimed solo comedy, Bad Dates by Theresa Rebeck. Her work also includes film, commercials, multimedia, teaching, writing, directing and stand up comedy. Her 2009-2011 performances of the solo show 101 Humiliating Stories garnered numerous awards including one of the Top 50 Shows of the Decade and a Best Actress award from Creative Loafing Atlanta in 2010.

 

She shared scenes from her one-woman show, High Risk, Baby! a comedy about the child within the mother, and Shelby’s personal voyage from infertility to motherhood, told from the perspective of both her 8-year-old and adult self. During the 75-minute autobiofictional ride, Lenora is on a mission, but her not-so-inner child is bursting with irreverent questions about DNA, ADD, quantum physics, boners &  babies — where they come from, how they get here, and mostly, how she can get one. With hilarious and maddening advice from her sex-ed teacher, Elvis, Mr. Rogers, the mysterious Dr. Mark, and a bunch of ill-mannered “dolls,” Lenora and her Honey board a train for a wild adventure that leads to some unexpected destinations.

 

Watch here:

 

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

Wanna make an AnCan Rude Names Fundraiser???

Wanna make an AnCan Rude Names Fundraiser???

Wanna make an AnCan Rude Names Fundraiser???

Here’s our latest proposal for AnCan supporters to raise a few bucks on our behalf ……. follow Brit Paul Taylor’s lead and raise money for us with a US Version Rude Names fundraiser . And to heck with a moped … we have a few bigger bikes in this Group.

Watch Taylor’s UK Tour in this short BBC video https://www.bbc.com/news/uk-england-oxfordshire-58375401 and see a few of the places he visited below!

Maybe you just have to be a Brit to appreciate this toilet humor …. but if not, AnCan is all ears!

Paul Taylor with his moped next to the stone sign at Shitterton

Four place name signs with a moped parked in front

A Dozen Eggs – reblogged from ASCO’s JCO

A Dozen Eggs – reblogged from ASCO’s JCO

A very interesting but challenging and thought provoking article came to AnCan’s attention last week published by ASCO’s Journal of Clincial Oncology.  The AnCan prostate cancer moderators thought carefully about whether we should reblog it Ultimately we decided it was worthwile for all our prostate cancer community, and maybe others too.

Please let us know your thoughts via info@ancan.org – we will add them to this page. Your editor has already taken the liberty of including some moderator responses:

Just one editorial comment on A Dozen Eggs , especially with men in mind using estrogen patches. AnCan is not aware of any clinical evidence that increased levels of estrogen promote prostate cancer progression. 

https://ascopubs.org/doi/full/10.1200/JCO.21.00804

Reactions

…. it is an excellent and thought provoking article.  If presented in the right context and sensitivity it could be quite instructive and inspirational.  

It is really a great piece.

I think it’s fine, although I’m a little concerned about the oncologist telling Evelyn that estrogen might make her prostate cancer worse.  I’m not aware of evidence supporting that concern 

Quite interesting and not something I even thought about. I’d say the majority of our “customers” are squarely in the heterosexual male category but I wouldn’t doubt that many of them may know someone similar to Evelyn.  I have a work association with a transgender woman that I’ve known for 15+ years, well before the transition.  I know from past conversations that she has not had reassignment surgery.  It might be something she faces in the future.  Now you have me wondering if they take the prostate out for reassignment surgery.

I have attended workshops discussing transgender issues in the medical world. The system mistreats and misunderstands transgender patients. Medical staffs humiliate them and ask for their birth names and to show their driver’s licenses.

If these patients undergo transformative surgery, they retain their prostates. So ironically, as much as they wish to change their identities, they need to undergo digital rectal exams and PSAs as part of routine care. 
Change is coming slowly to accept these people in medicine and in the larger society.
Hi-Risk/Recurrent/Advanced PCa Video Support Recording, Aug 24, 2021

Hi-Risk/Recurrent/Advanced PCa Video Support Recording, Aug 24, 2021

Hi-Risk/Rec/Adv PCa Video Support Recording, Aug 24, 2021

 

To sign up for a Reminder to join in person, please visit https://ancan.org/contact-us/

For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=... if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.

Looking for a Pylarify PSMA scan – check this website: https://www.pylarify.com/ordering-and-reimbursement

No meeting next week in the 5th week of the month, but we have two webinars:

Managing Your Medical Team – 8.00 pm Eastern, Tuesday, 8/31 Register at https://bit.ly/3jGNN1V

A Layman’s Guide to Medical Research Language , Wednesday, 9/1 at 8.00 pm Eastern at https://www.gotomeet.me/AnswerCancer ; no pre-registration required.

 

Editor’s Pick: Drug holiday suddenly becomes an option ….. yes or no?? (rd)

Topics Discussed

Low PSA, hi Gleason man goes through many treatments; who to see now Dr. Alicia Morgans has moved on; considering Intermittent Hormone Therapy; recurrence rears it’s head – Dr. M has moved on; “I’m mCRPC” – what does that open up?; Provenge; carcinoembryonic marker …. for PCa?? ; handling neuropathy; one of our regualars faces shoulder surgery

Chat Log

Dell (to Organizer(s) Only): 3:09 PM: Off Eligard since Dec 2020, PSA less than 0.1 and with a rising testosterone. Last week the TS was 369 and this was the first increase in PSA to 0.5. Just looking to know who is the new recommendation for Chicagoland (Northwestern) with Dr Morgans gone.

Joe Gallo (to Everyone): 3:12 PM: A drop-in presentation sponsored by the AS group. Open to all on a drop in basis at Barniskis. First Wednesday program scheduled for 8-9:30 p.m Eastern on September 1, 2021 is titled “A Layperson’s Guide to Reading Medical Research” Aurora Esquela Kerscher, PhD, is an associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center, Eastern Virginia Medical School in Norfolk, Virginia.

Larry Fish (to Everyone): 3:15 PM: where those spots all on Prostate – or had it already spread. So why radical prost…

Joe Gallo (to Everyone): 3:16 PM: Also a webinar Webinar: Managing Your Medical Team on Tuesday August 31st at 8:00-9:30 pm ET. Register now: https://bit.ly/3jGNN1V Larry Fish (to Everyone): 3:20 PM: chemo?

Herb Geller (to Everyone): 3:20 PM: Genetics?

Paul Freda (to Everyone): 3:20 PM: What was the name of that Firmagon oral substitute ? Anyone ?

Herb Geller (to Everyone): 3:20 PM: Orgovyx

John Antonucci (to Everyone): 3:21 PM: AKA relugolix

Joe Gallo (to Everyone): 3:21 PM: Daily pill

Stan Friedman (to Everyone): 3:21 PM: genetic testing?

Larry Fish (to Everyone): 3:23 PM: So what is he doing now – exaCTLY? what trials? chemos? ADL? exercise?

AnCan – rick (to Organizer(s) Only): 3:27 PM: Kelly may be good BUT how come no chemo???

Larry Fish (to Everyone): 3:28 PM: wow – pretty knowledgeable! how is his Quality of life now?

Pat Martin (to Everyone): 4:05 PM: Any doubling time

AnCan – rick (to Everyone): 4:07 PM: Pylarify 18F DcfPyl PSMA test. Made by Lantheus …. https://pylarify.com

Pat Martin (to Everyone): 4:12 PM: I’m sorry for my ignorance…in the Northwest we have a Tri-Cities but no Quad-Cities. What are they?

Herb Geller (to Everyone): 4:13 PM: I just looked it up. It is a group of cities on the Illinois-Iowa borde

Pat Martin (to Everyone): 4:14 PM: Thanks

Les Schjelderup (to Everyone): 4:15 PM: That is where I live also.

Pat Martin (to Everyone): 4:19 PM: My experience…25 months of ADT Lupron and Abiraterone. Had a vacation of several months. PSADT was 1.5 months and had an Axuminn scan to pinpoint the problems. Then went back to ADT, Eligard and Abi. Way fewer side effects and better energy.

John Ivory (to Everyone): 4:19 PM: Thanks Pat

Jake Hannam (to Organizer(s) Only): 4:35 PM: oral chemo? cyclophosphamide? not a taxane – mght work for him with lower PSA than mine

Jim Ward (to Everyone): 4:42 PM: Can someone spell the name of the report that was referenced, beginning with a “k”?

John Antonucci (to Everyone): 4:43 PM: caris

Jim Ward (to Everyone): 4:43 PM: Got it – thanks!

AnCan – rick (to Everyone): 4:43 PM: Caris ……. it’s a competitor to FMI

Paul Freda (to Everyone): 4:47 PM: How to spell lutecian ? Anyone ?

Len Sierra (to Everyone): 4:47 PM: Lutetium

Herb Geller (to Everyone): 5:04 PM: I gotta go soon

Stephen Saft (to Everyone): 5:07 PM: I am 6’5″ and 225lbs and ask about this all the time. It is mostly ignored by the Drs i have spoken to. Doesn’t make sense to me.

Jerry Deans on Walking in the Wilderness

Jerry Deans on Walking in the Wilderness

We are so grateful to have Jerry Deans on our Advisory board here at AnCan. His book Lost But Not Forgotten: How Wilderness Experiences Can Transform Your Life, is just of the few days he and his wife Patsi turn pain into purpose.

Jerry was recently on the REimagine podcast, which you can listen to by clicking here.

Then, Patsi joined Jerry on another of REimagine episodes, which you can listen to by clicking here.

You’ll hear about faith, grief, and how families go through trials and tribulations.

We highly recommend listening to both, and know you will find them inspiring and uplifting!

Hi-Risk/Recurrent/Advanced PCa Video Support Recording, Aug 24, 2021

Hi-Risk/Recurrent/Advanced PCa Video Support Recording, Aug 16, 2021

Hi-Risk/Recurrent/Advanced PCa Video Support Recording, Aug 16, 2021

To sign up for a Reminder to join in person, please visit https://ancan.org/contact-us/

For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=… if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.

Looking for a Pylarify PSMA scan – check this website: https://www.pylarify.com/ordering-and-reimbursement

Editor’s Pick: Prednisone may just be a side drug to abiraterone acetate but hear what happens when your medical team fails to mention weaning off it when you stop abi – it’s BAD!! And we run cross two cases where an RO might just be thinking more about billings than patient welfare.(rd)

Topics Discussed

older gent never advised to wean off pred & lost 60# – next?; treating the primary (prostate gland); Lu177 PSMA trials; participant reports on Ac225+pembro+ enz trial; CTC explanation; Botox for bladder spasms; Pylarify used to check ‘discordant’ lesions; Antonarakis on the move; cyclophos’ stops being effective; finding Pylarify (see above); PSA moving up; ibuprofen vs tamsulosin (Flomax) for post RT frequency/urgency; RO’s, deep pockets & integrty – caveat emptor!

Chat Log

Jake (to Everyone): 5:13 PM: Welcome all!

Ted Healy- Portland, OR. (to Everyone): 5:25 PM: Have to go folks. Thank you!

Pat Martin (to Everyone): 5:25 PM: Somatic testing?

carl forman (Private): 5:32 PM: FYI. I have a film crew coming to my home this Wednesday for the video project on men living with advanced prostate cancer, that you had referred me to. Thanks.

Stan Friedman (to Everyone): 6:07 PM: Dr. Borys Mychalczak. He is the chief, radiation oncology at MSK Westchester & MSK Bergen

Rick Davis (to Organizer(s) Only): 6:23 PM: Prof Bill had this Tx!

Joel Blanchette, Reston, VA (to Everyone): 6:42 PM: (From Dr. Antonarakis) I have left Johns Hopkins, and I am not able to provide any professional advice at the moment (sorry). Please make an appointment to see Dr Sam Denmeade, so that you remain connected with a medical oncologist at Johns Hopkins. I have no idea how anything will work at the University of Minnesota, nor what needs to be done to transfer records. It may be a while before I am able to see patients there, because I am not fully credentialled in the state of MN and I don’t know how long that will take. Thanks for your patience, and please connect with Dr Denmeade in the meantime.

Rick Davis (to Everyone): 6:46 PM: Sorry Gents – just got knocked off. We are having a big monsoon.

Mark Perloe – Atlanta (to Everyone): 7:00 PM: Good evening. Have to run.

Alan Moskowitz (to Everyone): 7:02 PM: Time to leave . Goodnight all.

Bob Smith (to Everyone): 7:07 PM: My onclolgist has ordered a CT and bone scan in October. As of 3 months ago, a bone scan showed 5 suspected bone mets and one almost certain bone met. If the next ct/bone scan series shows lots of mets, would a PSMA ga 68 likely give me any additional actionable information? Or, should I go for the PSMA ga 68 test instead of the ct/bone scan series. I am a VET so I could fly from HI to West LA for another PSMA ga 68.

Herb Geller (to Everyone): 7:09 PM: I would think that a PSMA PET scan would be in order. It will give more information

Len Sierra (to Everyone): 7:09 PM: I agree with Herb on the PSMA PET.

Joe Gallo (to Everyone): 7:11 PM: Bob. VA at WLA PSMA PET is using Pyl and is available at no cost to Vets. It is significantly more detailed than a Bone or CT scan. I can give you contact info if you want.

Bob Smith (to Everyone): 7:12 PM: Thanks everyone. Joe, I have the contact info. Julian Morales (to Everyone): 7:21 PM: Thanks for the great discussion! See you next week.

Hi-Risk/Recurrent/Advanced PCa Video Support Recording, Aug 24, 2021

Hi-Risk/Recurrent/Advanced PCa Video Support Recording, Aug 10, 2021

Hi-Risk/Recurrent/Advanced PCa Video Support Recording, July27, 2021

To sign up for a Reminder to join in person, please visit https://ancan.org/contact-us/

For the Embr hot flash control gizmo, visit https://myrcc.redcapcloud.com/?#join=… if you signed up and have not heard back from Embr, make sure you signed your Informed Consent. Check your email OR call Embr.

Editor’s Pick: 11,201 could be an alltimer’s AnCan record opening PSA – and now it’s undetectible!! (rd)

Topics Discussed

PSA of 11,000+ drops to undetectible!; Keytruda sensitivity test for a BRCA2 guy entering trial; abi or PARP for another BRCA2 man; AnCan stalwarts uses BAT until Lu177 PSMA available; Lu177 PSMA Manaed Care Access trials; lipid panel discussion and new drug that cuts LDL; Embr hot flash gizmo in action; IMRT or SBRT when treating the gland alone for Mx men; side effects during treatment from gland IMRT start to hit; can a man with recurrent PCa consider a drug holiday?; serious rash from Orgovyx is news to Myovant

Chat Log

Jim Ward (to Everyone): 3:04 PM: You’re cat is way too uptight, Jimmie.

Jimmy Greenfield (to Everyone): 3:06 PM: Stressed!

John Ivory (to Everyone): 3:13 PM: David, not only did you win the cancer lottery you also qualify for our Under 60 advanced group. The next meeting will be on Thursday at 7 pm CDT https://ancan.org/event/under-60-advanced-prostate-cancer-2/2021-08-12/

Joe Gallo (to Organizer(s) Only): 3:30 PM: Would a PSMA PET be helpful – more sensitive for mets

Jake (to Everyone): 3:32 PM: peterk@ancan.org

Carlos Huerta (to Everyone): 3:42 PM: It is being done UCLA. Dr Weidhause is collecting the data.

Carlos Huerta (to Everyone): 3:47 PM: I believe it is called MiraDx. Your Onc can call her and have the mouth swab sent out. Joanne Weihaas MD. They are checking for a KRAS-variant. Regarding the Keytruda sensitivity test/study?

Rick Davis (to Everyone): 4:16 PM: Jerry’s podcasts https://podcasts.apple.com/us/podcast/episode-71-in-wilderness-conversation-on-grief-jerry/id1505597825?i=1000530499186 (Jerry starts around 7’30”) https://podcasts.apple.com/us/podcast/reimagine/id1505597825?i=1000531167643 (Jerry & Patsi starts around 9’15”)

Len Sierra (to Everyone): 4:20 PM: Findings of a Phase III imaging study, unveiled at the American Heart Association’s annual conference, show that adding Repatha (evolocumab) to statin therapy resulted in statistically significant regression of atherosclerosis in patients with coronary artery disease (CAD), indicating the drug might offer a key advantage over statin therapy.

David Plunkett, KCMO (to Everyone): 4:21 PM: Is this it? https://www.repatha.com/

Herb Geller (to Everyone): 4:22 PM: Yes, that’s it. A new mechanism of reducing LDL.

Herb Geller (to Everyone): 4:25 PM: That would be the under 60 group, perhaps.

Jake (to Everyone): 4:26 PM: United States +1 (646) 749-3129 Canada +1 (647) 497-9373 Australia +61 2 9091 7603 Access Code: 222-583-973

Rick Davis (to Everyone): 4:44 PM: Dennis – here’s a good link for you to review. https://arizonaoncology.com/cancer-treatments/radiation-therapy/radiation-treatments/

Len Sierra (to Everyone): 4:45 PM: Published online 2016 May 6. doi: 10.3389/fonc.2016.00114 PMCID: PMC4858516 PMID: 27200300 Intensity-Modulated Radiation Therapy with Stereotactic Body Radiation Therapy Boost for Unfavorable Prostate Cancer: The Georgetown University Experience

Julian Morales (to Everyone): 4:45 PM: Volumetric-modulated Arc Therapy (VMAT)

Pat Martin (to Everyone): 4:49 PM: See you all next Monday

John Ivory (to Everyone): 4:57 PM: One other way to ask the question–instead of asking if you’re getting sbrt, why not say, “I talked to someone who got sbrt and it only took 5 sessions. Can you tell me why it will take me so many more?”

Len Sierra (to Everyone): 4:58 PM: Good suggestion, John!

Herb Geller (to Organizer(s) Only): 5:07 PM: I gotta go, sorry. I’m in the hot seat next week.

Jake (to Everyone): 5:07 PM: Night,

Herb kang (to Everyone): 5:07 PM: take courage to try

Herb Geller (to Everyone): 5:08 PM: I gotta go. See you next week.

Julian Morales (to Everyone): 5:10 PM: Gotta go too – see you next week. thanks!

Bruce Bocian (to Everyone): 5:11 PM: Ill be seeing Smulewitz this month! I see Vandeerweele tomorrow

Len Sierra (to Everyone): 5:13 PM: Dropping off, guys. See you next week!

Don Price Boulder colorado (to Everyone): 5:16 PM: see all next time…dinner time here.

Jake (to Everyone): 5:23 PM: Thanks Peter!

Gary Peters (to Everyone): 5:24 PM: Dropping off guys. Have a good week

Solo Arts Heal with Michael Bihovsky

Solo Arts Heal with Michael Bihovsky

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 July 28th, we had the pleasure of having Michael Bihovsky!

Michael shared his award-winning film and musical theater works, ranging from Les Mis parodies to full musicals about neuroplasticity to his brand new music video, Paperweight, which documents the COVID-19 pandemic experience through the lens of disability. Through this wide range of creations, Michael demonstrated how he has created music and art whose poignancy (and comedy) shines through not merely despite his struggles with the connective tissue disorder Ehlers-Danlos Syndrome, but because of those struggles.

Watch this incredible performance here:

 

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

Special Presentation: The Future of Liquid Biopsies in Active Surveillance

Special Presentation: The Future of Liquid Biopsies in Active Surveillance

On Aug 4th, Dr. Martin Tenniswood (Chief Scientific Officer – miR Scientific) spoke at our Active Surveillance Virtual Support Group with a special presentation titled “The Future of Liquid Biopsies in Active Surveillance

Dr. Tenniswood is the co-founder of miR Scientific, which is developing a new liquid biopsy known as Sentinel. He has been searching for the “Holy Grail,” a liquid biopsy for prostate cancer, throughout his 40-year career. He spoke about his search and research in this arena.

We want to thank Dr. Tenniswood for answering questions!

 

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.