Active Surveillance Prostate Cancer

Active Surveillance Prostate Cancer

Active Surveillance Prostate Cancer Virtual Support Group

Active Surveillance (AS) for low-risk prostate cancer presents its own challenges that are very different from other treatment protocols. This virtual group is for men and caregivers on or considering AS to treat their condition. New participants are given priority to discuss their situation.  Click here for detailed information.

1st, 2nd & 3rd Wednesdays & 4th Thursdays of each month at 8 pm EST/EDT (US)

Moderators: Ken Mason, Howard Wolinsky, Alexa Jett, Hugh Idstein.

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 20, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 20, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 20, 2023

AnCan is grateful to the following sponsors for making this recording posssible: 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/

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: Let’s talk financial assistance … and a little mutation edcuation!! rd

Topics Discussed

PSA recurrence from mystery source; appointment made with a real GU med onc; what’s this TP53 index – allele frequency??; GU med oncs at MSKCC; chemo drives down PSA but no change in scans; buy a hard hat Dr. Kwon – Oliver Sartor’s inbound!; keep your hair with chemo; monitoring disease post salvage RT; finding financial assistance; when it comes to PSMA scans, mCRPC not the same as mHSPC; PSA up post chemo while abi challenges liver function; MPCP doesn’t provide patient feedback; PSA creeps up on IHT.

Chat Log

  • David Muslinsent · 6:25 PM
    I did say that because he had a met in his girdle
  • Herb Courtney sent · 6:25 PM
    Re the Axumin scan, I had a negative one at a PSA of ~6
  • sent · 6:30 PM
    it took my brother well over a year before his post-radiation PSA started to drop
  • AnCan – ricksent · 6:42 PM
    Bless you Norm!!!
  • George Rovder, Arlington VA sent · 6:54 PM
    Thank you all. I have to go. George
  • Frank Fabish Columbus OH sent · 7:11 PM
    Thanks guys for sharing. gotta go.
  • Herb Courtney sent · 7:16 PM
    Thanks guys. Gotta go to dinner.
  • John A sent · 7:24 PM
    Headache is getting to me so I have to go, but I want to thank everyone who wrote or called me with support since my head injury. If I wrote gibberish or wrote twice to someone sorry, I discovered I sent several emails in a blackout! If I forgot a message try again. I am slowly improving.
  • gary peters sent · 7:31 PM
    I believe Rick may be referring to the Formula 509 trial
  • Don Eisner sent · 7:40 PM
    Have to leave now
  • Phil Snyder (Houston) sent · 7:52 PM
    Have to leave.
  • Jim – Tucson sent · 8:05 PM
    Got to leave, thanks.
  • Richard Tolbert sent · 8:07 PM
    Thanks Jim. One of my former reps works for Pfizer who markets XTANDI with Astellas is working with his leadership to see if they will provide assistance. In 2022 I had a grant from The Assistance Fund that covered both ORGOVYX. I was denied 2023 funding due to lack of funding.
  • Pat Martin sent · 8:17 PM
    Gonna head out. See you all next week
  • Stan Friedman sent · 8:26 PM
    Sorry, I’m fading and need to leave. Thanks for the input on possible MSK docs. Will keep you up to date.
  • Bob G sent · 8:31 PM
    Thanks all. Gotta get up early for program where I’m matched with a cancer researcher. Going to his lab tomorrow morning.
AnCan Art Friends – February 21, 2023 – Butterflies

AnCan Art Friends – February 21, 2023 – Butterflies

Come float away with us, as we create colorful butterflies in this art class! Watercolor pencils can be found at Dollar Tree, Michaels, Hobby Lobby, any craft supply store. You can also use regular watercolor paints, crayons, and colored pencils. Don’t feel like you need to go out and purchase an entirely new set of supplies!

 

What you’ll need 

  • Paper – watercolor paper if you are using watercolor pencils or paints
  • Art medium of your choice –  watercolor pencils, watercolor paints, crayons, or colored pencils (if using watercolor pencils or paint)
  • Brushes – any you have
  • Water + napkins

 

Watch here:

 

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 14, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 14, 2023

AnCan is grateful to the following sponsors for making this recording posssible: 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/

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: Prostatectomy and recurrence…in a Gleason 3+3. (bn)

Topics Discussed

Rug pulled out on his Xtandi and Orgovyx financial support; two great docs to choose from in Houston; options if you’re de novo, living on Maui, and have Kaiser insurance; 2016 prostatectomy for a Gleason 6 — and now PSA is climbing; nighttime leg cramps as radiation treatments end — try Theraworx, Caleb Treeze, pickle juice; EmbrWave still hot topic; Gleason 10 a decade ago and he’s still going strong; hyperbaric chamber report — ear issues and blood pressure but cystitis is improved; still battling fatigue 9 months post-ADT, though testosterone is back and he’s active; Antanorakis OKs a 6-month ADT shot; mailman won’t stop bringing pills; bladder bleeds during clinical trial but he’s sticking it out; for neuropathy, Voltaren and/or bumpy sandals; half-gallon-a-day drinker of corn silk tea for cystitis; radiation therapy might be OK with colitis.

Chat Log

Peter Kafka-Maui HI · 6:24 PM Dr. Eleni Estathiou at Houston Methodist or Dr. Paul Corn at MD Anderson

Julian – Houston · 6:27 PM Elani Efstathiou Houston Methodist Oncology (713) 441-9948 eefstathiou@houstonmethodist.org

Rick · 6:30 PM Hi Gents – am following from. SFO waiting for the Air

Ravi · 6:33 PM how does it cool you? surprising

Rick · 6:35 PM It acts on a nerve in your wrist

Rick · 6:36 PM Heh Gents – following from SFO

Peter Kafka-Maui HI · 6:49 PM I have told him about Andrea Harztark

Richard Tolbert · 6:50 PM Jim, that would be great.

Bob McHugh · 7:05 PM Should I be surprised that docs would do RP at a Gleason 6?

Jim Marshall, Alexandria, VA · 7:07 PM Genitourinary Medical Oncologist

Pat Martin · 7:07 PM In the pathology report, were the margins negative for cancer?

David Muslin · 7:09 PM Marijo Bilusic, MD, PhD

David Muslin · 7:09 PM 1475 Northwest 12th Avenue, Suite 3039, Miami, FL 33136

Rick · 7:09 PM Was likely a bogus 3+3!!

David Muslin · 7:10 PM https://sylvester-doctors.umiamihealth.org/provider/Marijo+Bilusic/1900896?alias_term=Prostate%20Oncologist&display=Genitourinary%20Medical%20Oncology&in_what=Genitourinary%20Medical%20Oncology&specialty_synonym=Genitourinary%20Medical%20Oncology.*&sort=relevance&tt=4401c3f3-0fc4-4894-9a72-7572d46dc973&ut=1bd2dbe5-f4a6-4630-bd27-7160c331d934&timestamp=2023-02-15T00%3A08%3A39.164Z&from=search-list

Rick · 7:14 PM No gents …. maybe micro Mx.. Pelvic girdle RT stilstan

Rick · 7:16 PM Still Standard

Rick · 7:17 PM High volume 3+3 can warrant surgery

Peter Kafka-Maui HI · 7:19 PM Theraworx

Harry Spila · 7:20 PM therworx is great stuff

Harry Spila · 7:20 PM it’s like a foam

George Wesoloski · 7:22 PM Epson salt (Magnesium sulfate) and soak in the bathtub

Ravi · 7:23 PM I have to leave now. All I wanted to report on was regarding what I am doing for my severe radiation cystitis. I am undergoing hyperbaric oxygen therapy 2 hours every day at 2.5 atm pressure of 100% oxygen. Had 10 treatments so far, about 1.5 more months to go.

Richard Tolbert · 7:26 PM For Leg and Foot Cramps: Proven Old Amish Formula.Caleb Treeze Organic Farms. 818.247.9600. Some health food stores carry , also try amazon.

Rick · 7:34 PM Stay away from 6 month shots

Rick · 7:35 PM Just check T in last 2mo N t hs

Pat Martin · 7:39 PM Capivasertib

Jim B · 7:49 PM Pat, What was the name of the arthritic cream that you use to relieve neuropathy?

George Wesoloski · 7:49 PM I could do an update.

David Muslin · 7:50 PM Prostotectemy praa · stuh · tek · tuh · mee

Pat Martin · 7:52 PM Volteran…diclofenac sodium topical gel 1% I’ve talked with a pharmacist that has concocted up to 5%

Jim B · 7:54 PM Thanks Pat! I’ll be giving that a try for the same neuropathy issues that I’m experiencing from chemo.

Frank Fabish Columbus OH · 7:55 PM got to go guys see you next week

Pat Martin · 7:56 PM I usually get the generic, usually right beside name brand, 10% discount

Kirt Schaper · 7:58 PM gotta go, good night gents

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 20, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023

Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 6, 2023

AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix

Dr. Mark Scholz revisited his indictment of prostate cancer overtreatment in our recent webinar, “Invasion of the Prostate Snatchers – 13 Years later!” The recording is still in post-production with PCRI and will be posted asap. Please follow YouTube – AnCan or sign up to our blog https://ancan.org/blog/ to receive notice when posted.

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: If you shortchange your treatment, you may live to regret it … plus more anxiety issues (rd)

Topics Discussed

Remote UCLA facility may provide 2nd rate care; gent resistant to do what it takes; don’t worry about post-Pluvicto until you’ve completed it; win-win trial but anxious; AnCan’s PPI message carreid back to Myovant in person; stay off ladders!; pulmonary/carotid lymph node to be biopsied; prerquisites for Pluvicto; starting Orgovyx; low level recurrence – when to intervene?; do Variants of Unknown Significance become significant?

Chat Log