Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 16, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 16, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 16, 2023

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/

Join our other free and drop in groups: Men (Only) Speaking Freely …1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/ Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern https://ancan.org/veterans/

Editor’s pick: Pain … is it cancer or something else? And Prof. Herb explains proteomics (rd)

Topics Discussed

Welcome to Myriad; new man hospitalized for heart issues; capaversitib antiangiogetic trial; SBRT side effects; non PSMA sensitive lesions demand chemo; proteomics; pain – is it cancer or something else?; new PCa #s are a scandal in waiting; Brawley the bully; remembering Cal VanZee GRHS; RT proctitis/colitis causes fatigue and urgency; white counts don’t return post chemo; possible recurrence signals return to Center of Excellence GU HCPs … for TWO of our Gents!

Chat Log

Pat Martin sent · 6:31 PM capivasertib….NCT05348577

Bob G sent · 6:38 PM Doing OK – a little achy but that’s from trying Pickleball today. Visiting friends in Outer Banks. Nice to get away for a while. How are you doing?

Pat Martin sent · 6:38 PM I haven’t seen Jeff Marchi from San Francisco for a while…is he doing OK?

AnCan – rick sent · 6:39 PM Jeff is on today if you want to message him

Pat Martin sent · 6:39 PM Just checking on him.

Pat Martin sent · 6:45 PM From the hand out, “works by inhibiting the proliferation of tumor cells.”

Frank F · 6:59 PM Got to go guys. Thanks for the sharing.

John A sent · 7:00 PM goodnight Frank

Jim Marshall, Alexandria, VA sent · 7:18 PM My sister is 71 and just diagnosed with Breast Cancer.

Wang Gao Shan – Panama sent · 7:19 PM My Mom was 73 years old when she was diagnosed with Breast Cancer.

Julian – Houston sent · 7:22 PM have to go for tonight – damn good conversations!!!

Pat Martin sent · 7:30 PM I use dicyclomine

Norm Pollock sent · 7:35 PM biogenesis intestinal support complex and doctor’s best pepzingi

Pat Martin sent · 7:38 PM What kind of chemo were you on?

AnCan – rick sent · 7:39 PM I believe it was only docetaxel

AnCan – rick sent · 7:41 PM Here’s a good convo on bone marrow Bx https://www.youtube.com/watch?v=2sArKYH1T7I

Bob G sent · 7:52 PM Got to go. Thanks everyone.

Geoff sent · 7:57 PM After Albert Chang was passed off to Anthony Wong at UCSF Radiation Oncology.

Sofia Sotelo sent · 8:00 PM I’ve got to jump. Thank you, have a great night

Mike Yancey – Oklahoma sent · 8:07 PM Gotta run. Great topics and discussions

Pat Martin sent · 8:09 PM Thanks much for listening and coaching

Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 16, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 2, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 2, 2023

 

Happy New Year to all … may it be healthy!

Please consider a donation based on the support you’ve gotten from these recordings in 2022. Read our letter at https://us14.admin.mailchimp.com/camp…

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/

Join our other free and drop in groups: Men (Only) Speaking Freely …1st & 3rd Thursdays @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer       Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer

Editor’s Pick: Is AnCan onto yet another largely unreported side effect – Pluvicto & myopathy (muscle wasting)? And 20% of mHSPC men show progression w/o PSA rise (ARCHES trial)!!  (rd)

Topics Discussed

Brainstorming hot flashes – from acupuncture to Megace; pain management; Pluvicto and myopathy; Pluvicto availability poses tx dilemma; more pain management re. Pluvicto; logistics of a Pluvicto session; urine stream and advanced PCa; upcoming Sholz webinar; better evidence from testicular PCa Mx could offer next tx guidance; sleep apnea; Payer attitude to repeat PSMA scans; what sequencing, PSMA and pathology offer; 20% of men on LHRH don’t show PSA rise with radiographic progression (see Len’s Chat post below); next step – BAT

Chat Log

Jim B · 8:17 PM Hi Bob, I am feeling pretty good all around. Finally I am in FL and getting settled in. On my first day here I was able to get a lot more exercise than up in the cold weather. How’s your WBC coming along?

Jimmy Greenfield · 8:26 PM BedJet3 Demo: https://youtu.be/t6i1j3tw8mQ

Peter Kafka – MAUI · 8:48 PM Organic dried prunes on a daily basis has helped me keep things moving. But strong drugs can be tough.

AnCan – rick · 9:13 PM Vets Group … https://ancan.org/veterans/

Paul Freda Lake Worth FL · 9:17 PM Where do we sign up for the Jan 30 Webinar ? Link ?

AnCan – rick · 9:20 PM Scholz webinar Scholz webinar https://attendee.gotowebinar.com/register/3476369222172706645

Bob G · 9:26 PM Testicular mets case study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209256/#:~:text=Most%20secondary%20testicular%20metastases%20originate,for%20advanced%20disease%20%5B3%5D.

Phil Snyder (Houston) · 9:42 PM Have to leave Gentlemen, thanks for listening in on the interesting exchange.

Joel Blanchette Reston, VA · 9:44 PM I researched about 6 months ago and the Inspire cost $40,000

gary peters · 9:46 PM Yikes. No wonder they are trying to market the heck out of it. I would try a lot of masks before spending that.

Paul Freda Lake Worth FL · 9:49 PM https://www.easybreathe.com/Breathing-Machines/CPAPs-c832/

Joe Gallo · 9:49 PM Scholz webinar https://attendee.gotowebinar.com/register/3476369222172706645

gary peters · 9:56 PM LOL. I did not know that cost. Happy New Year

George Rovder, Arlington VA · 10:03 PM Inspire costs $1,400 with Medicare, according to Inspire website https://inspiresleep.com/ cost-and-eligibility

AnCan – rick · 10:06 PM @JeffW .. from Telix – “Medicare typically reimburses one scan for suspected metastases prior to definitive treatment, and scans after definitive treatment (biochemical recurrence) are not limited to a number, but all must meet medical necessity.   Commercial payors typically have similar policies, but there are so many different plans that the answer can vary. Almost all commercial payors require prior authorizations so the patient should know if the scan will be reimbursed before arriving for the test.”  Hope this helps.

Len Sierra · 10:08 PM Armstrong recommends imaging every 3 months in mHSPC. From the ASCO 2022 Annual Meeting: See yellow highlights below. https://dailynews.ascopubs.org/do/10.1200/ADN.22.200934/full/?cid=DM10522&bid=171588107    ARCHES Analysis Underscores Importance of Regular Imaging to Detect Progression in Patients With mHSPC Receiving Potent AR Inhibitors May 26, 2022   Dr. Andrew J. Armstrong Key Points: • Post hoc analysis of the ARCHES trial identified frequent discordance between radiographic progression and prostate-specific antigen (PSA) progression among patients with metastatic hormone-sensitive prostate cancer (mHSPC) receiving enzalutamide. • The results suggest that regular radiographic imaging, rather than serial PSA testing, is the preferred method for monitoring disease progression in patients with mHSPC receiving a potent androgen receptor inhibitor.

Cancer Can Be a Glass Half Full!

Cancer Can Be a Glass Half Full!

Cancer Can Be a Glass Half Full!

Some of our Blog readers, have attended AnCan’s Speaking Freely virtual group. That’s our men-only meeting that talks about everything and anything EXCEPT treatment. It’s open to all men living with a chronic condition and provides a great opportunity twice a month to get things off your chest and to air issues where another perspective may help. Like all our meetings, it’s free and drop in on the 1st and 3rd Thursday of each month starting at 8.00 pm Eastern in our AnCan Barniskis Room.

Celebration of Alan Babcocks 17 years of service!, Penn State Harrisburg,  Morrison Gallery, Library Room 101, Middletown, December 9 2022 |  AllEvents.inDecember’s second meeting of the month hosted a newbie to Speaking Freely but not to our AnCan Groups. Alan Babcock has been attending our prostate cancer groups for a while; he was finally able to vacate his schedule to make a Speaking Freely group. Alan recently retired from a hugely meaningful and rewarding career where he supervised Disability Services for students at Penn State – Go Nittany Lions!! Over the years, his team enabled thousands of disabled students to graduate .

In the course of the SF group conversation, we spoke about how cancer has impacted our lives – positively and negatively. When Alan mentioned he’d be keeping track of all the gifts received from his prostate cancer experience, we immediately asked for a copy – and here it is.Thanks for sharing your vulnerabilities, Alan and for allowing others to learn and benefit!  (Editor: We’ve chosen to put Prostate in parenthesis, because for the large part, we think this applies to most all cancers!! )

Gifts of (Prostate) Cancer 

1. I experienced a flood of love and good wishes from family, friends, and colleagues.

2. I returned to therapy, and I deepened my self-understanding.

3. I had the opportunity to confront my mortality, which taught me to think about decisions I make day-to-day.

4. I saw my wife do battle with the medical establishment on my behalf and win.

5. My love for my wife deepened as we confronted a life crisis.

6. I watch myself travel from despair to acceptance. Once again, demonstrating my resilience to myself.

7. I was given the opportunity to learn how to love my wife in new ways.

8. For about the hundreth time, I saw my wife was a tower of strength, and I learned once again that she would always be there for me.

9. I felt my wife’s unconditional love as she held me while I cried for all of my losses.

10. I experienced what it was like to have somebody pray for me.

11. I took control of my well-being by firing my first urologist and finding better care elsewhere, which was empowering.

12. I talked to other men who had prostatectomies about highly personal subjects.

13. I started to learn how to engage in Mindfulness rather than just talking about it.

14. I experienced a high school friend showing how much he cared by not only investigating where I received treatment, but also the physician who was going to perform the prostatectomy.

15. My brother-in-law showed how much he cared by arranging a consultation with a physician at the Dana-Farber Cancer Center.

16. A professor, who I did not know well, gave me her telephone number, and told me to call any time day or night.

17. I learned what was helpful and what was unhelpful when someone was facing a life crisis.

18. I joined a support group, in which I learn much about prostate cancer and in which I receive support.

19. I am learning to accept my limitations.

20. I have helped other men, which has been rewarding

Jay Sandler Shares His Pancreatic Cancer Story

Jay Sandler Shares His Pancreatic Cancer Story
jay sandler
Now here’s an uplifting pancreatic cancer story for you.
Jay Sandler of Canopy Cancer Collective celebrates almost a decade as a pancreatic cancer survivor. He later went on to be our moderator for our support group. 
Read his story at the Hirshberg Foundation about what must have felt like a never-ending treatment journey.
Pancreatic Cancer Awareness Month is over, but there’s still plenty of reason to celebrate stories and celebrate survivors. If you or a loved one happens to also be diagnosed with pancreatic cancer, drop into one of our group meetings. We meet on the 4th Thursday of each month at 8 pm ET / 7 pm CT / 6 pm MT / 5 pm PT in the AnCan Schmier Room. 
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 16, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 7, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 7, 2022

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/

Join our other free and drop in groups:

Editor’s Pick: Whether the word’s concordant or congruent, if your PSMA and CT scans don’t match up, talk carefully with your Provider if you’re a good candidate for Pluvicto! (rd)

Topics Discussed

Make sure your PSMA and Full CT scans are concordant .. or is it congruent??; new lesions appear in Pluvicto follow-up scans; is BAT an option to follow Pluvicto?; when best to start Tx on recurrence; starrting IHT; liver cyst shows up on an Axumin scan; tear duct issues from chemo; Pluvicto availability; does ADT control DHT – dihyydrotesterone?

Chat Log

Jim Marshall, Melbourne, FL to Everyone 06:28 PM Concordance – Agreement or consistency

Robert G (Colorado) to Everyone 06:30 PM I think this is an overview of Bipolar Androgen Therapy that was mentioned earlier. I don’t know if there is anything more recent: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/

Bob G to Everyone 06:33 PM Here’s something newer https://www.urotoday.com/video-lectures/asco-gu-2022/video/2563-the-state-of-bipolar-androgen-therapy-in-prostate-cancer-emmanuel-antonarakis.html

Bob G to Everyone 06:42 PM Took about 11 days before I felt back to normal. Easier how? So, I’m done (for now) with chemo. I retry abiraterone at 1/2 dose in another 10 days & will see. Scans in early Dec & then see Dr.

Me to Everyone 07:01 PM https://onlinelibrary.wiley.com/doi/abs/10.1002/pros.24452

Jim Marshall, Melbourne, FL to Everyone 07:19 PM For you Florida guys, you can track and predict storms, hurricanes, etc with the Ventusky weather model out of the Czech Republic at. www.ventusky.com you Gulf states can use it too along with East & West Coast. It predicts weather all over the world.

Ben Nathanson to Organizer(s) only 07:31 PM mary-ellen taplin?

george rovder arlington virginia to Everyone 07:50 PM Thank you all. Good Night.