Hi-Risk/Recurrent/Advanced PCa Video Chat Recording, Sep 20, 2021
3 survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a
….. if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Changing your doc comes up multiple times this week – make sure you find one with whom you connect! One other takeaway – don’t test if it don’t make a difference! (rd)
Topics Discussed
Embr’s Wave – now and agin later; Testosterone returns quickl for man in 70’s; treating metastatic disease in N. Florida; Pylarify reimbursed by Medicare; Bipolar Androgen Therapy; ‘ABC’ man dives into cabazitaxel; chemo side effects; Amazon Smile pitch; more WAVE; any relationship between abi and highh clacium?; PSA fluctuatuing on abi; what’s next? – cabazitaxel or Radium 223; peripheroal neuropathy and Vit B6; switch docs to find a good fit with YOU!
Chat Log
Joe Gallo (to Everyone): 5:48 PM: Eleni Efstathiou, Houston Methodist; Paul Corn MD Anderson
Joe Gallo (to Organizer(s) Only): 6:09 PM: She could also do a preview interview via telemed Dr. E website says she will accept video visits
Rusty (to Everyone): 6:14 PM: Off to Fly Fish thanks to Reel Recovery. A dream trip to northern ME all comp. via Reel Recovery. Check it out. I believe this trip would cost $2,400 if paying your own way. 3 days and 2 nights, everything included, even a personal guide and instructor. All for guys living with cancer.
Len Sierra (to Everyone): 6:16 PM: I’ve heard of Reel Recovery, Rusty, and I’ve been wanting to do it, too. Sounds like a great program!
Herb Geller (to Everyone): 6:16 PM: Sounds great,
AnCan – rick (to Everyone): 6:21 PM: ABC Club …. Anything But Chemo
Maria Cintia (to Everyone): 6:26 PM: thanks for let me know, I call tomorrow
3 survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=a…
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomat…
Editor’s Pick: Loads of cutting edge this week – cytokine storms from pembro or just an infection??? Two men fare diferently with Lu177 PSMA. And heed the warning – don’t pussyfoot when PCa first recurs – it may return.(rd)
Topics Discussed
Caregiver discusses 50+ husband’s metastatic disease; slow moving recurrence requires RT a SECOND time; exercise via a PT???; cytokine storm or just an infection – be sure before more pembro; two experiences from different Lu177 trials; is Pylarify Medciare approved?; agonist ADT resumed after 12-mo holiday with no buffer; low testosterone/metastasis are formula to get Covid booster
Chat Log
Bruce Bocian : 3:21 PM: Berger is our friends Urologist
Jake Hannam : 3:30 PM: Provenge since PSA is low right now?
Stephen Saft (to Everyone): 3:54 PM: Didn’t someone say they have been tolerating 20 Docetaxel treatments because of physical exercise
Len Sierra (to Everyone): 3:55 PM: That would be Iron Man Ken Anderson
Herb Geller (to Everyone): 3:56 PM: Exercise Preserves Physical Function in Prostate Cancer Patients with Bone Metastases. Galvão DA, Taaffe DR, Spry N, Cormie P, Joseph D, Chambers SK, Chee R, Peddle-McIntyre CJ, Hart NH, Baumann FT, Denham J, Baker M, Newton RU. Med Sci Sports Exerc. 2018 Mar;50(3):393-399. doi: 10.1249/MSS.0000000000001454.
Richard G. (to Everyone): 3:58 PM: Is the value of exercise more for the cardio (running)or for the strength (weights)? Probably both but does one win out over the other? rg
Len Sierra (to Everyone): 3:59 PM: Both are very important/
Richard G. (to Everyone): 3:59 PM: Was John’s recurrence after 10 years after RP caught by having PSA test every 3 months for the 10 years? rg
Maria Anderzunas (to Everyone): 4:00 PM: I wonder that same thing as Richard G with the exercise, cardio or streghth , which is best, both would be optimal I’m sure.
John Vandenberg (to Everyone): 4:02 PM: yes, PSA test every 6 months for 10 years before recurrence; must leave – shared computer – thanks very much I’ll be calling in – John
Richard G. (to Everyone): 4:04 PM: tks Richard G. (to Everyone): 4:19 PM: what is the trial name? what is the term sidocan storm?
John Antonucci (to Everyone): 4:20 PM: cytokine
Len Sierra (to Everyone): 4:20 PM: cytokine storm
Richard G. (to Everyone): 4:20 PM: tks
Herb Geller (to Everyone): 4:21 PM: Cytokine storm is a result of a massive reaction of the immune system to an insult. Cytokines are hormones released from immune cells that signal to other immune cells, but also affect other cells.
John Antonucci (to Everyone): 4:22 PM: I don’t think it can account for the destrution of the platelets???
Peter Kafka (to Everyone): 4:28 PM: The Keytruda test: IMUDX swab test The resuts came from Soomi Fabian-Aguilar. Indicated I was “Low Risk” for Keytruda. Ordered by Dr. Mark Scholz of Prostate Oncology Specialists. ImuDX Testing – MiraDxhttps://miradx.com › imudx-testing This test predicts the risk of developing immune related adverse events in response to anti-PD1 or anti-PDL1 treatment. Already performing ImuDx Testing? ImuDx …
Stephen Saft (to Everyone): 4:32 PM: is there a possibility that Lu 617 will be approved soon?
Len Sierra (to Everyone): 4:33 PM: John Antonucci: Hematological Side Effects of Immune Checkpoint Inhibitors: The Example of Immune-Related Thrombocytopenia https://www.frontiersin.org/articles/10.3389/fphar.2019.00454/full
Herb Geller (to Everyone): 4:33 PM: All the information we have says that early next year.
Alan Moskowitz (to Everyone): 4:33 PM: Do we know when Medicare will cover Pylarify? (DCF-Pyl – Psma scan)
Len Sierra (to Everyone): 4:35 PM: Alan, I don’t think that is known.
John Antonucci (to Everyone): 4:35 PM: thanks Len got the article
Alan Moskowitz (to Everyone): 4:36 PM: Len – I had heard that possibly it could be covered now, in a private radiology setting vs in a hospital. But have not been able to confirm.
Len Sierra (to Everyone): 4:37 PM: Hmm, that’s seems odd, Alan. You’d think it would be the opposite.
Alan Moskowitz (to Everyone): 4:38 PM: Len – something about ‘pass through’ status is required for hospitals to bill it. I had talked to a rep from the company that makes it, Lantheus, and there was some vague comments that the company was possibly reimbursing radiology centers for the difference in cost for pylarify vs generic tracer. Again – not so clear.
Richard G. (to Everyone): 4:44 PM: Why not a psma pet scan for Alan M?What is the other name for PSMA petscan? “pilarafy”?
Len Sierra (to Everyone): 4:50 PM: 18F-DCFPyL
Alan Moskowitz (to Everyone): 4:53 PM: Richard G – I have also searched for clinical trials for psma scan – but having been in 2 of these already , i have not found any that is relevant.
ALFRED LATIMER (Private): 4:55 PM: I need to leave. See you next time. Thanks again for all your and groups help
AnCan – rick (to ALFRED LATIMER): 4:55 PM: pleasure – stay in touch
3 new survey opportunities have come our way for you …… and AnCan receives a donation for each approved respondent:
…… if you are taking or have taken and stopped relugolix (Orgovyx), you can earn upto $200 for 80 min of your time, mostly a one-on-one interview. Or, upto $350 if you interview together with your caregiver. Please reach out to us via info@ancan.org and we’ll connect you.
……. if you experience a cough or shortness of breath and are in any type of active treatment, including for urinary issues, there is an opportunity to earn $100 for 60 minutes of time from your home computer. The cough or shortness of breath does not have to be related to your diagnosis or treatment. If interested, please go to https://gigs.savvy.coop/stcancer/?r=ancan
…… if you have experienced mouth swelling and sores (stomatitis) as a result of past or current treatment, there is another opportunity to earn $100 for 60 minutes of time from your home computer. If interested, please go to https://gigs.savvy.coop/cancer-stomatitis/?r=ancan
Editor’s Pick: We discuss ‘compassionate use’ of Lu177 this week … and much more! (rd)
Topics Discussed
Complications around follow up after R2 Lu177 trial fails; Compassionate Use; Tx options after 12mo. drug holiday; Orgovyx Ambassador; rashes from both Lupron and Orgovyx; pushback on getting testosterone tests; post-RP hernia; Embr experience; peripheral neuropathy issues; doctor willing to push darolutamide; long term chemotherapy use; processing information on reports from pathologists and radiologists; BiTE AMG 509 experience; cytokine storm report
Chat Log
Jake Hannam (to Everyone): 7:39 PM: cyclophospamide with steroid
Jake Hannam (to Everyone): 8:11 PM: my oncologist recommended Viamin B6 for PIN
Jake Hannam (to Everyone): 8:46 PM: AMG 509 is a bispecific antibody that binds to two different proteins; one found on the surface of cancer cells and one on the surface of T cells in the immune system. Researchers think that AMG 509 may strengthen the immune system’s ability to fight cancer cells. It is given intravenously (by vein).
John Antonucci (to Everyone): 8:47 PM: thanks Jake
On September 1st, we had Aurora Esquela Kerscher, PhD (Associate professor of microbiology and molecular cell biology and a prostate cancer researcher at Leroy T. Canoles Jr. Cancer Research Center) offered strategies to help laypeople understand medical research articles.
Laypeople may want to read medical journals to find out the latest research in the media, including findings that might impact their care. Dr. Kerscher said it can be hard to track down and expensive to obtain papers. She said Google Scholar at https://scholar.google.com/ and PubMed.gov can lead to pertinent papers. ResearchGate.net can help link people to authors, who might be willing to send interested parties their papers.
In this presentation, Dr. Kerscher gave an anatomy of a research paper, focusing on a new study on how exercise can help prostate as well as cardiac health in men on active surveillance.
She also provided a step-by-step guide on how to quickly read/skim a research paper.
“Ask yourself – WHAT IS THE BIG QUESTION?”
–What problem is being addressed?
–Then ask yourself – Why should I care?
Her final helpful tips were:
• Read slowly, take notes as you read,
• Question assumptions, the importance of the problem.
• Write questions to track what you don’t understand. Write down and translate jargon in Google.
• Sometimes what is not in the paper is more important than what is in it.
• Is there something the authors have overlooked?
• Don’t let ideas or design details pass until you understand them.
• Do not assume the paper is correct, even if published in a prestigious peer-reviewed venue
Watch this extremely information presentation here:
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.
We received this great email from AnCan community member Allen, with tips from a patient’s perspective on to best manage your medical team, as inspired by our webinar “Managing Your Medical Team“.
From Allen himself…
First, I live in Auburn, Alabama, which is a smaller college town with a population of about 68,000 residents, including about 30,000 students. Until recently, we only had 1 urologist for the entire county with 175,000 residents. I was diagnosed with PCa a year ago and started looking outside my community for more options.
I landed at Emory University last November, but was disappointed with the level of service and attention to detail. After they made several mistakes this spring, I fired my team at Emory in July and went with a private practice Urologist in Atlanta and Dr. John Sylvester, a prominent Radiation Oncologist in Sarasota, FL.
I am much happier with the team I have now, but I have found it a little challenging managing a team of doctors in 3 different states and various distances from my home. Following are some things I have learned:
1. Referrals are not as important as they used to be. Many doctors will accept new patients without a referral.
2. Choose the Doctor, not the Institution, to get a doctor you are comfortable with.
3. Insurance – make sure the doctor is in your insurance network and ask your insurer if procedures are covered so you are not blindsided.
4. Telehealth calls – ask if the Doctor can do them, especially across state lines.
5. Keep good notes! I found a notebook system has been a great help in organizing my notes, phone calls, and appointments.
6. HIPAA – If you are comfortable with emailing your records and questions, that is your decision. I would rather get my info into the right hands quickly than to worry about a lot of red tape. Doctors may be more restricted by HIPAA rules.
7. Patient Portals – Use them if you can. It is an excellent and secure way to access your health records.
8. List your questions for the Doctor prior to visits to make sure you cover your concerns. Be concise. (and always hand the doc a copy of your questions at the start of your consult – that way everything gets answered: AnCan)
9. Coordinate your Medical Team – Secure office and FAX numbers and other contact info and have that info available to other members of your team if needed. This can save a lot of time and prevent delays.
10. Insist on getting good Diagnostics Tests.
Thanks, Allen! And as we say here at AnCan…Be your OWN best advocate!
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!
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.
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 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.
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.
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.
…. 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.
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.
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.
