Hi-Risk/Recurrent/Advanced PCa Video Chat, July 3, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
AnCan’s Prostate Cancer Forum is back https://ancan.org/forums. If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: This meeting was packed with lots of good stuff – from diabetes management on HT to the equivalency of gentle vs strenuous exercise (rd)
Topics discussed
Hormone treatment and diabetes management (see Chat); next ‘foamy gland’ treatment discussion; do I need a bone strengthener – pros & cons; does TP53 increase risk for other cancers?*; can ADT result in physical anxiety?; advanced prostate cancer management at Walter Reade Military Hospital; are scans a valid protocol to close out hormone therapy treatment?; is gentle vs strenuous exercise equivalent? * My lack of concern over TP53 is based on somatic mutations only! Germline TP53 carries risk for other cancers. (rd)
Chat Log
Ben Nathanson sent · 5:16 PM I think Jeff Marchi is right about the new video…we finally appear to have more than 25 cameras on!
Jim Marshall, Alexandria, VA sent · 5:18 PM It appears I can get up to 30 screens of people. jim Sylvester sent · 5:19 PM Sylvester has nothing tonight. I can hear this session. Thanks.
sent · 5:21 PM I can only get 8 active cameras. People go blank including me, and the 8 rotate between many people. If I pick everyone all but 8 cameras are blank, but I see 28 boxes If more than 28 here, it is now possible to slide over and see another screen of 28. That’s new
Larry Fish sent · 5:31 PM newer diabetes medications: I am on Mounjaro very effective AIC down from 8.1 to 7.1 in just 2 months; other more popular medication is Ozempic (sp?)
Steve Schuler sent · 5:53 PM Bye, have a safe 4th folks!
David Muslin sent · 6:14 PM What was that the name of the drug that Len just mentioned?
AnCan – rick sent · 6:15 PM Zometa
John A sent · 6:25 PM sorry pl defer to Dr Jack. Yes to PT and relaxation techniques. Yes to therapy for underlying fear. Can’t eliminate the cause–ADT and PCa.
David Muslin sent · 6:35 PM For what it’s worth, my Rad Onc at Northwestern stayed in touch with me for 12 months after my SBRT treatment
sent · 6:40 PM My Rad Onc is ordering a PSMA Pet scan. My Med Onc is ordering my meds.
AnCan – rick sent · 6:42 PM You need a GU med onc, Jay!
John A sent · 6:49 PM I tried that on my doc, and he was one of the authors of ARCHES. He declined to order any scans until my PSA got at least to .2.
Neil Sundstrom sent · 6:51 PM can you put that scan name in the chat?
george rovder arlington va sent · 6:52 PM https://peterattiamd.com/rajpaulattariwala/ Rajpaul Attariwala, M.D., Ph.D.: Cancer screening with full-body MRI scans and a seminar on the field of radiology
sent · 6:59 PM Diffusion weighted MRI. Dr. Raipaul Attariwala in Vancouver at AIM medical imaging
Frank Fabish Columbus OH sent · 7:01 PM Have a great 4th. See you next week.
Stan Friedman sent · 7:05 PM Len, are you on a beta blocker? I was experiencing real shortness of breadth a month ago and went to my internist. I had been taking propranolol for years to calm an essential tremor I had. He took my off the beta blocker and my short windedness disappeared and my fatigue lessened as well. Of course, my tremor is back, but I can deal with that.
Neil Sundstrom sent · 7:06 PM Gotta go. Happy 4th everyone.
David Muslin sent · 7:10 PM I have to roll gents. Have a safe 4th. Enjoy your families and be in the moment.
Cliff Collins sent · 7:11 PM I really must get some rest. I have a big bike ride in the morning. Please enjoy the 4th with family and friends.
Dennis Correia sent · 7:11 PM great discussion on exercise.
Parp-Inhibitors have long been on AnCan’s radar since our dear departed Boardie, Dr. Bill Burhans, found himself with olaparib in his lab in 2015 and convinced his tumor board to prescribe it along with abiraterone for his BRCA2 mutation.
Question is …
What’s a PARP-Inhibitor, and what does it do?
Who benefits from a PARP?
Do PARP-I’s work for everybody?
How can a PARP-I be used for prostate cancer?
AnCan brings you two experts to discuss. Dr. Pamela Munster of the UCSF BRCA Research Institute with her unique peer perspective, and Dr. Neal Shore who just released the TALAPRO-2 Study using a PARP with Xtandi.
Watch here:
Special thanks to Bayer, Pfizer, Myovant Sciences, Foundation Medicine, Myriad Genetics, Janssen – Johnson & Johnson, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 27, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
WEBINAR this week … PARP-Inhibitors and their role treating Prostate Cancer. Who saw the FDA approval for Talapro + Xtandi this week? Hear one of the investigators talk about this combo on Thu June 29. Register at https://tinyurl.com/ancanparpwebinar
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:Where next when standard treatments are behind you? (bn)
Topics discussed
Chance a risky trial hundreds of miles away?; think ahead before firing the last bullet; mixed reviews of Cancer Commons; “too old for a PSA test” and now metastatic; what’s “Pluvicto” in Canadian?; one man, two dueling prostate cancers; making it through Pluvicto; check for PSMA avidity before a pricey treatment; will Pluvicto last?; facing chemo after six lucky years on ADT; after success with triplet therapy, time for drug holiday?; new man starting Keytruda; bad cancer + low PSA?; shrinking the unshrinkable prostate; turned away at OHSU and seeking something comparable; magnesium for neutropenia; BAT is no home run; what counts as exercise?
Chat Log
Mark Finn · 7:06 PM
Rick – finishing up packing for camping trip. Will have to depart soon.
David Muslin · 7:07 PM
Have fun Mark Finn
Ben Nathanson · 7:19 PM
Pluvicto – generic “lutetium Lu 177 vipivotide tetraxetan” – formerly “Lu-177 PSMA-617”
Frank Fabish Columbus OH · 7:32 PM
Got to go guys. Thanks again for good info. see you next Monday.
David Muslin · 7:48 PM
Got to roll men. See y’all next week.
AnCan – rick · 7:49 PM
646-749-3129 222 583 973
Steve Schuler · 7:49 PM
I think my laptop needs a reboot
Steve Schuler · 7:50 PM
My question was really simple actually: any suggestions in the northwest for good med oncologists for second opinions?
Bob G · 7:50 PM
Gotta go. Fatigue kicking in.
Steve Schuler · 7:51 PM
Yes, I’ve tried both the ear buds and now the laptop microphone, and neither is working for the microphone
Steve Schuler · 7:53 PM
Washington, Oregon, or I am also looking now at CA (San Francisco). I am willing to travel some. I am in Seattle
AnCan – rick · 7:53 PM
I’ll ask ….
Julian – Houston · 7:54 PM
Go to go – see you next week!
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 19, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
WEBINAR next week … PARP-Inhibitors and their role treating Prostate Cancer. Who saw the FDA approval for Talapro + Xtandi this week? Hear one of the investigators talk about this combo on Thu June 29. Register at https://tinyurl.com/ancanparpwebinar
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/
Switching to darolutamide; is ARV7 still relevant?; cabazitaxel (Jevtana) vs docetaxel (Taxotere); mega fatigue may warrant a drug holiday; starting Pluvicto on top of chemo; Ambrx ARX517 trial; troublesome hot flashes are a flashpoint; picking the right GU med onc; starting immunotherapy while tapering on steroids; pectin supplements
Chat Log
Len Sierra sent · 5:28 PM Darolutamide inhibited the transcriptional activity of AR mutants identified in the plasma of CRPC patients progressing on traditional therapies. In particular, darolutamide significantly inhibited the transcriptional activity of the F877L, H875Y/T878A, F877L/T878A, and the previously unreported T878G AR mutants, that transform enzalutamide into a partial agonist.
John A sent · 5:33 PM Liu et al. Selective degradation of AR-V7 to overcome castration resistance of prostate cancer. Cell Death Dis. 2021
AnCan – rick sent · 5:38 PM Oliver Sartor now at Mayo
AnCan – rick sent · 5:49 PM Depo-Provera
George Southiere sent · 5:56 PM ACTH(adrenocorticotrphic) stimulation test = patient given ACTH and adrenal gland function is assessed- usually done by Endocrinologist
John A sent · 5:57 PM thanks
George Pat Martin sent · 6:00 PM I’m worn out. Gonna log off . be back next week
AnCan – rick sent · 6:04 PM Venlafaxine
Len Sierra sent · 6:05 PM https://embrlabs.com/products/embr-wave-2
AnCan – rick sent · 6:07 PM Embr watch.. d/c
Ancan50 sent · 6:07 PM Depo provera
George Southiere sent · 6:08 PM Gabapentin has helped me due to my severe neuropathy and has helped the hot flashes for me
sent · 6:09 PM I take 600mg gabapentin 3 times a day now. It never helped with my hot flashes.
Len Sierra sent · 6:37 PM modified citrus pectin (MCP) increases the prostate-specific antigen doubling time in men with prostate cancer: a phase II pilot study
Len Sierra sent · 6:39 PM 1. Modified citrus pectin (MCP) increases the prostate-specific antigen doubling time in men with prostate cancer: a phase II pilot study
Len Sierra sent · 6:40 PM https://pubmed.ncbi.nlm.nih.gov/14663471/
Salvador sent · 6:43 PM Thank You for your feedback.
Chip & Jane sent · 6:48 PM G’nite All.. thanks for the fine discussion.
George Rovder, Arlington VA sent · 6:52 PM Thank you all. Good Night.
Salvador sent · 6:53 PM Thank You everyone, I learned a lot tonight
Terrill SF sent · 6:53 PM Thank you all. Good Night.
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 13, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant & Telix
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
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: Prostatectomy after 70. Also: Pluvicto wiped out 99% of his cancer — time for a jig! (bn)
Topics Discussed
Metformin’s faded glory in PCa treatment; grateful for heads-up on Xgeva with radium-223; statins and PCa — still anybody’s guess; darolutamide monotherapy might cut fatigue; curious about new hot-flash drug for women; experience with Onco360 pharmacy; when will white blood cells rebound from radiation; bike seats and PCa; seeing metastasis in lymph nodes that radiation skipped; dry mouth and depression overshadow wild Pluvicto success; too old for prostatectomy?; Keytruda and more Keytruda.
Chat Log
Steve in MI · 6:09 PM
Suttons Bay is nice; my wife has a few properties she manages up there. We get to Interlochen at least 2 or 3 times during the summer for concerts. Styx is the next one.
Steve in MI · 6:13 PM
There is a few up around here in the summer: Charlevoix, Fish Town, Elk Rapids. Ours is in August I think.
Julian – Houston · 6:18 PM
stopped taking because it made my bones ache!
Gary P · 6:20 PM
While not actually diabetic, I was put on Metformin after my blood sugar levels went up significantly on Abiraterone.
Julian – Houston · 6:24 PM
Same here, Gary. Took for awhile and my A1C came down.
AnCan – rick · 7:33 PM
“Patients received Pluvicto 7.4 GBq (200 mCi) every 6 weeks for up to a total of 6 doses plus BSoC or BSoC alone.”
BSoC = best standard of care
Tom Maloney · 7:34 PM
The recommended Pluvicto dose is 7.4 GBq (200 mCi) intravenously every 6 weeks for up to 6 doses, or until disease progression or unacceptable toxicity.
Tom Maloney · 7:34 PM
up to 6 doses, not requiring 6 doses.
AnCan – rick · 7:34 PM
The trials all gave 6 doses
Len Sierra · 7:36 PM
Tom, the dry mouth usually resolves by itself soon after your treatment is complete.
AnCan – rick · 7:38 PM
We do not know anyone who did less than 5 doses by choice. Doesn’t mean there aren’t any. However your doc is recommending you finish up.
AnCan – rick · 7:39 PM
We’ve seen less than 6 doses but only where blood counts or other markers have been compromised.
AnCan – rick · 7:45 PM
Xgeva = denosumab
Steve in MI · 7:52 PM
Keep coming back Spencer.
? · 7:52 PM
Thank you to everyone for excellent advise.
Joe (Dubois WY) · 7:59 PM
keytruda
Julian – Houston · 7:59 PM
Keytruda
Julian – Houston · 8:00 PM
Thanks guys. Another great session.
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant & Telix
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
Apologies to all who attended live last night! GoTo issued a massive update over the weekend and did not advise their customers. Some folks couldn’t even open their rooms – in our case we lost video. Citrix support was less than honest, causing even more grief. As you saw we had to shut down the room and restart after they reset our settings. It put me in a very grumpy mood … :-(( – apologies if I offended anyone!
Editor’s Pick: I could go for the very end with ice cream and Capt Joe’s tips on koi – BUT how about somatic testing?! It’s so important, many docs don’t test, and when they do, forget to repeat!
Topics Discussed
Dx at a young 80, denovo Nx; time to switch from the VA?; Gents wants to add abi but doc reluctant; chemo fails – nothing sticks… what next but somatic testing!; multiple treatment modes at one time;…and another without answers who needs testing and a GU med onc; retention issues from RT damage – back to rad onc; our foamy gland guy holds steady; switching to Metformin for diabetes … and cutting out the ice cream!; all you ever wanted to know about keeping koi!
Chat Log
rd sent · 5:31 PM DELMARVA gents… organize a lunch!!!
rd sent · 5:48 PM somatic testing
Julian – Houston sent · 6:31 PM good evening everyone – see you next week! Thanks!!!
And when we say free, we mean that in addition to the lesson being free, the supplies will also be free, too!! We are SO happy that we are able to offer this class – especially because it will benefit a community of individuals that is much more in need of mental health benefits than they might realize.
Last day to register is June 19th. We want to make sure everyone receives their supplies on time!
Your instructor, Hannah Garrison, currently works with the VA hospital system in San Antonio, TX, as a creative arts instructor for their psychiatric units. She has been there to witness the incredible mental health benefits of a creative arts practice in the individuals she works with. We’re here to provide space for a community of like-minded individuals. Starting a new hobby can be intimidating, so that’s why we are so happy to be able to provide your supplies completely free.
PLEASE send this class registration to any and all Veterans you know, that may be interested.
We’ll be using watercolors and watercolor pencils! You’ll be receiving everything needed to complete this project in our class time – minus any napkins and water, of course.
Are you a Veteran in need of some virtual support? Whether you have chronic illness, cancer, mental health concerns, etc; we welcome you with open arms. We’re a virtual support group filled with other peers who have a lot of advice and support to offer.
Next meeting is June 22nd at 8pm ET / 5pm PT. Drop in HERE. No need to register.
Looking to make some art a little sooner? We have our next general art class on June 8th at 8pm ET! It’s free, and it’s BYOAS (Bring Your Own Art Supplies). We’re making an acrylic painting on canvas!
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 23, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
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: Handcuffed by HMO, making the best of it. (bn)
Topics Discussed
Memory issues, but HMO won’t allow him darolutamide — try monotherapy abi?; tumors block TURP surgery, hoping ADT will ease surgeon’s job; AnCan pushes for better Orgovyx pricing; acupuncture and hot flashes; abi first, then enzalutamide — not the reverse; doing well on daro doublet after chemo; Orgovyx probably won’t thin the fog; mulling DEXA scan report; daro monotherapy addresses heart issue; filling the need for exercise with an e-bike; how much vitamin D?; grateful after switching to a GU oncologist; keep alert to side effects in Xgeva and Prolia; AnCan’s prostate cancer forum is back (https://ancan.org/forums); Embr Wave outdoors; landing an appointment with Oliver Sartor.
Chat Log
Harry Spila · 7:58 PM gotta go, take care everyone
AnCan – rick · 7:59 PM Happy riding!
Harry Spila · 8:00 PM 🚴
Mike Yancey – Oklahoma · 8:06 PM Gotta run
julian – houston · 8:06 PM great conversation, as always. Enjoy your Memorial Weekend!
Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
Hello friends! We have yet another recording for art class! This time we have May’s art project: Twilight In The Pines! Last week we got to use acrylic paint for this serene piney scene at the twilight hour. We had a great time, and we even celebrated longtime participant, Karen Broder’s birthday!
If you’d like to give it a try for yourself, check out the video below:
Check out supplies here:
Canvas 9x12in OR your size preference
Acrylic paints: Two types of Blues (I’ll show you how to make more blues if you don’t have another)/ Orange / Pink (I used a dark pink; can use red if needed) / Yellow / White / Black
Brushes: Flat 3/4in or similar / Fan brush small size OR Round brush if you don’t have a fan brush
Water
Napkins
Option: something to cover up anything you don’t want paint splatters to get on
Know someone who wants more information about our art classes? Send them over to our Art Class FAQ HERE
You can also check out past class there, too!
Our next class will be held a little bit earlier than usual: Thursday June 8th at 8pm ET
