Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 11, 2026
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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 Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Toss up between the silver lining in HT treatment, and slow T recovery.
Topics Discussed
Originally AS Newbie graduates to T3 maybe T4 treatment; mono daro working but dental issues arise; Alaska doc needs a solid GU QB; pros and cons of tolerating hormone therapy; post-RP PSA still going down; … and post RT/HT PSA declining for our Poet; whole body MRI vs PSMA scans for monitoring; still getting the runaround for GU MO at Sibley – but RO set; follow up PSMA now negative for younger Gent; leg pain and fatigue likely not from HT drugs; MRI on T10 prior to spot RT; heavy brain fog suggests switching ARSI but Pluvicto follows; T recovery slow but after 7 months – don’t panic
Chat
Steve Schuler (Seattle) sent: 3:30 PM
My Rad Onc at Fred Hutch was Jonathan Chen, and I felt like he provided competent care. My oncologist was Evan Yu; he’s been bumped up, and now it is Rajitha Sunkara. I like her.
Jim Ekrut, Ft. Worth TX sent: 3:33 PM
I recommend Biologics by McKesson or Onco360 as specialty pharmacies with access to financial aid. I received a grant from PAN through Biologics that covered all costs for one year of Orgovyx.
Steve L sent: 3:36 PM
UW Northwest is the location for Proton Therapy. They may also do other radiation treatment.
Steve Schuler (Seattle) sent: 3:45 PM
I talked to my oncologist (Rajitha Sunkara). and referenced the PATCH study.
Jim Marshall, Vet Sup Grp. Moderator sent: 3:58 PM
CASODEX = Bicalutamide Jim
Jim Ekrut, Ft. Worth TX sent: 4:12 PM
I finished eighteen months of Orgovyx June 19. It did exactly as intended alongside radiation, with my PSA <.01 and testosterone <10 for a full year. My PSA was measured Friday 8/7 , almost seven weeks post-treatment, still <.01 but testosterone has risen to 48. That said, I experienced every side effect listed on the Orgovyx website and more.
Sorry to leave, but I have another meeting commitment. Thanks for the support. All the best!
Jeffrey G sent: 4:21 PM
How old is he?
AnCan–John A sent: 4:21 PM
64
Dave Lied – Pittsburgh sent: 4:23 PM
Thank you all for the informative discussion tonight. Sorry to leave early.
Jim Marshall, Vet Sup Grp. Moderator sent: 5:12 PM
Was on ADT for 5 years, did not budge for 3+ years. Then and now less than 50, Jim
Steve Schuler (Seattle) sent: 5:15 PM
thank you for the feedback, exactly what I wanted!
Barry Blomquist sent: 5:15 PM
Thanks guys good information – next week.
Steve Schuler (Seattle) sent: 5:16 PM
I had been on Zometa when I had teeth removed, and my oral surgeon gave me Pentoxifylline 400mg + vitamin E 450mg for 60 days, which is apparently a protocol that increases blood flow (perfusion ?) and reduces risk of jaw necrosis
Jim Marshall, Vet Sup Grp. Moderator sent: 5:18 PM
When Abi caused Liver issues, I got dropped from 4 to 3 pills a day and good for the next 5years.
Steve Schuler (Seattle) sent: 5:19 PM
EMBR worked for me moderately well, but I dropped it when I started E2, which was a great help to me
Stay in shape with FIT Together in your own living room!
Mark and Kathy Baldridge are avid birders, and as a result, frequent visitors to “Deep Southern Arizona” from their home in University Place, Washington. You may have seen them in an AnCan Group – we’ve been supporting the Baldridges since 2021.
Recently Mark mentioned an at home exercise program in a group, so we encouraged him to tell us more so all AnCan’rs living with cancer could participate… with or without their care partner.
This October 17th, AnCan will participate in the OHSU-Fred Hutch Prostate Cancer Summit. Dr. Kerri Winters is also speaking, and Dr. E (Eleni Efstathiou), the new Chief of Genitourinary Cancer at OHSU, has already set up a time for us to meet. We’ll be writing about the Summit closer to the date. (rick davis)
Back in high school, I did multiple pushups before I went to bed. Fast-forward 50 years and I was unable to do a single pushup. Over the years, I’d fooled myself into thinking I was in ‘decent shape’ because I took long walks several times a week. The truth was that after being diagnosed with osteoporosis, 24 months of Hormone Therapy and a lack of upper body exercise, my overall strength had significantly declined.
Fortunately, I discovered an online exercise program FIT Together for cancer survivors and their partners. FIT Together is a 501(c)(3) nonprofit organization founded in 2014 under the leadership of Dr. Kerri Winters-Stone and Jessica Sitemba. Dr. Winters-Stone has a PhD in Human Performance and has been conducting research in exercise oncology for 20 years. She has run over 15 clinical trials funded by NIH and cancer non-profits. I have participated in two of Dr. Winters-Stone’s clinical trials run through Oregon Health Sciences University – OHSU.
I’ve attended FIT Together classes for a year and can attest that the instructors are excellent. They demonstrate each exercise and then give tips to ensure each participant correctly performs the exercise. The instructors individualize and tailor movements and exercises to accommodate each person’s needs—no matter what the person’s fitness level. For instance, pushups can be performed in many different ways (e.g. against a wall/desk/chair or on hands and knees/feet).
The classes are held twice per week at various times virtually. I love the convenience of performing these exercises at home and look forward to each class. All you need for the classes are dumbbells, a resistance band, stretch strap and an exercise mat. The cost for this equipment is quite reasonable—less than $75.
There are several classes to choose from: strength training, strength/cardio and an exercise class for couples. Classes are very reasonably priced— around $5 per session for a 12 week/24 session class… even less if two of you join together.
I participate in the strength training class and physically feel much better about myself. It’s been really encouraging to see that I’ve slowly gained upper body strength. While I still can’t do a pushup on my hands and toes, I can perform 12 pushups on my hands and knees—I’m on my way to performing a full pushup.
I highly recommend these classes and hope to see some of you in a class—you won’t be disappointed!
This essay has circulated among medical folks, and I thought we might benefit from it.
The Bridge
by KJ Ramsey
The medication you don’t want to take, the habit you don’t want to start, the conversation you don’t want to have, the test you don’t want to get. It’s a bridge.
You don’t have to love the bridge. You just have to walk across it.
I found this bridge on a hike and stood at the beginning of it for a minute thinking about all the times I’ve used this word in a room with a patient who was afraid of what came next.
A bridge is not the destination. Nobody moves to a bridge. Nobody stays on a bridge. A bridge is the thing between where you are and where you need to be and its only job is to get you across.
You don’t judge a bridge. You don’t stand at the beginning of one and criticize the materials or the design or the length. You don’t look at it and say this isn’t how I would have built it. You just step onto it because the other side has something you want and this is the way across.
You don’t judge how long the bridge is. Some bridges are short and you cross them in a day. A conversation, an appointment, a decision you’ve been avoiding. Some bridges take months. A recovery, a medication, a season of grief, a complete rebuilding of the way you eat or move or think. The length of the bridge is not the point. The crossing is the point.
Sometimes you stop in the middle. You stall. You stand there looking at how far you’ve come and how far you still have to go and neither distance feels manageable. That’s okay. Standing still on a bridge is not the same as going backward. You’re still on it. You’re still between where you were and where you’re going and standing there for a while doesn’t mean you’ve failed. It means you’re catching your breath.
There is no right way to cross a bridge. Some people walk fast with their eyes on the other side. Some people walk slow and look at the water underneath. Some people stop 4 times. Some people almost turn around and then don’t. All of them get across if they keep going and the bridge doesn’t care how long it takes.
The bridge is teaching you something while you’re on it. Not after. While. The medication you didn’t want to take is showing you what your body feels like when it has support. The habit you didn’t want to start is showing you that you’re capable of something you thought you weren’t. The conversation you didn’t want to have is showing you that the weight gets lighter once you share it. The bridge is not just the path to the lesson. The bridge is the lesson.
I’ve watched patients stand at the beginning of a bridge and refuse to step onto it because they couldn’t see the other side. I’ve watched patients step onto it and want to turn back because the middle felt worse than the beginning. I’ve watched patients get to the other side and turn around and look at the bridge and say “that wasn’t as bad as I thought it was going to be” and I’ve heard that sentence a thousand times and it’s true almost every time.
The thing you’re avoiding right now is a bridge. The thing that feels uncomfortable, inconvenient, or scary is a bridge. You don’t have to love it. You don’t have to understand why it was built this way or why it’s this long or why you’re the one who has to cross it.
You just have to take the next step. One step. Not the whole bridge. The next step. The bridge will hold you. It was built for this.
The original version of “The Bridge” by KJ Ramsey, as posted on her official website, kjramsey.com
This reminds me of an invite I wrote to you 3 years ago:
In Between
We work with our oncologists to maximize our survival.
In MSF, we have worked on maximizing the number of hours we enjoy each day by focusing on the present.
Here is my idea to find lots and lots of brand-new minutes to live in each hour:
Remember this picture? What is it a picture of?
When we look out at a scene or see a picture, there is a foreground of objects that we look at. That’s the figure. There is a background, far less important, barely even noticed. That’s the ground.
It’s the same with time. There are the things we do; they are on the calendar and take up all our consciousness. Then there is the useless time in between. Driving from one thing to another. Walking up the stairs. Waiting on hold. Sitting in the waiting room. The pause between forkfuls. The white space on the calendar. Waiting for someone to answer the phone.
Try changing your awareness from the figure to the ground—not just with space but with time. Try becoming as aware of the time in between as the activity we are doing. You don’t know it’s there until you look for it.
I’m hoping that by mining this time in between, we can gain a hundred precious minutes a day.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 3, 2026
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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 Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Let’s determine if Gent really has metastatic disease before progressing with treatment.
Topics Discussed
Newbie sees disease progression and starting Pluvicto; bad pulmonary reaction to Erleada for this Newbie who’s switching to City of Hope; possible recurrence for Newbie – needs a GU MO; DeBono’s remarkable VIR5500 may be in play for Frank; determine if Gent is truly metastatic before proceeding with more treatment; starting salvage RT; nipple pain soon after starting holiday; is Dr. John’s pelvic pain PrCa, AUS or something else?; defer to your GU MO not local general MO; fatigue… when is T. replacement safe post HT; signed up for Reel recovery
PSMA PET Multifocal avidity within the prostate with highest in left PZ (SUVm 3.4). There is focal uptake with low SUVm (3.1) in the right scapula and right manubriu, (SUVm 2.9) and T5 vertebral body (SUVm 2.9)
Larry in AK sent: 7:03 PM
I hope it will be a continuing feature.
Len Sierra sent: 7:04 PM
Avery, those are all very low SUV max values. Do you know what the liver uptake was?
AnCan – rick sent: 7:04 PM
they’re all fairly low SUVs, Avery
AnCan – rick sent: 7:05 PM
we understand why they are dubious about your Mx
Avery sent: 7:07 PM
Where will i find the liver uptake in the PSMA PET?
Peter M sent: 7:10 PM
Good night gents! Great meeting.
Avery sent: 7:12 PM
Liver: Stable appearance of multiple simple fluid attenuating hepatic cysts, the largest of which in right lobe measuring approximately 3.1 x 3.5 cm
“Thomas” Matica sent: 7:12 PM
Good night. Great discussion.
Lee Baylin, Baltimore sent: 7:13 PM
good night
AnCan – rick sent: 7:19 PM
From Larry in AK Sorry for coming in late. Has anyone mentioned the estradiolinitiative newsletter has published its firs volume. Read it on the estradiolinititive.org website by clicking on the menu at the top on “Resources” and find “Newsletter” near the bottom of the menu. https://estradiolinitiative.org
Bob Schwartz, USN, Venice, FL. sent: 7:22 PM
The E Newsletter was FANTASTIC! I highly encourages everyone to read it.
Barry Blomquist sent: 7:24 PM
Have to jump, next week:)
Alfredo in Sacramento sent: 7:25 PM
I have to take a call; good night to everyone 🙏
Bob Schwartz, USN, Venice, FL. sent: 7:26 PM
Good mtg., have to go.
Larry in AK sent: 7:27 PM
Last page of the newsletter has my editorial. A lot less dry than the body of the newsletter.
Keeping cool in the heat of Summer… and tackling hot flashes year round
We hear it time and time again – keeping cool is not easy.
Many people across our communities complain about how much the heat impacts their ability to function at all – whether it’s from outside heat or internal flashes.
I can talk about this one pretty confidently myself, as I’ve been living with MS for 9 years now (wow!). It’s a known heat and cold -intolerant disease that causes temporary symptom flares known as Uhthoff’s Phenomenon. But I’m not the only one. Heat impacts many of us frequently – especially MS’rs and men on hormone therapy.
It’s a consistent and persistent problem for so many of us, so I’d like to dedicate this blog post to the hot, sweaty, brain-fogged, but brilliant AnCan community.
Below you’ll find some recommendations for cooling products and other resources that we hope will ease your summer; not to mention your Quality of Life all year round.
The first part is a list of specific products that are tried and tested by either myself or someone in one of our community groups – with many of them coming from one of our lead moderators, Kim Stroeh. Thank you, Kim! Other suggestions come from AnCan Gents wrestling with hot flashes in the prostate cancer world, like Barry Blomquist and Bob Alvord… thank you!
Second is a list of products that we’ve heard about, but so far we don’t know of anyone who’s tried them; also products that maybe we have tried and tested, but don’t really have a specific link for.
Third is small list of tips and resources. I’m going to keep this part relatively small because it will probably need a completely separate blog post. Since Kim and I both have a chronic illness (MS) that makes us much more susceptible to the heat, a lot of our resources come from organizations that deal with it specifically. I’ve included those orgs that may be helpful no matter what our community may be living with.
Pro Tip:
Did you know that some insurance companies may cover the cost of a cooling product? That’s because it’s considered a DME (durable medical equipment). It may be tedious, but call them up and ask.
We don’t get any financial benefit from these products; these are just some things that our community members have recommended because they actually work for them. Hopefully they work for you too!
I’ll be including a lot of links from Amazon because it’s simply easier to see a wider range of products and brands in one spot. I know Amazon may not be everyone’s favorite shopping platform, so feel free to use these ideas as a springboard to your preferred shopping platform or store.
Have a product to add or a link to a product listed below? Email me at Hannah@ancan.org
1. Tried and True
Specific products that are tried and tested by someone in one of our community groups
I just got one at the start of the summer and I absolutely love it!! I wonder why I didn’t get one sooner. Keeps me cool under the blanket when I move around. When I’m still, it keeps me warm. – Hannah
Recommended by Bob Alvord (High Risk Prostate Cancer). See section 3 below for his favorite way to use this rechargeable neck fan when combined with a wet cooling towel!
“If indoors with extended cooling packs will stay cool for 2-3 hours or longer. Outside, it depends on how hot it is. I think the melting temperature is 72 degrees vs 32 degrees of water. Can become solid again at room temperature if the ambient temperature is cool enough.”
“Don’t waste your money on slim packs, buy the extended packs and by an extra set so you can switch out in between (you can buy in bundle and save money). The one reason I like this cooling vest is that its cooling packs are only on your back so it weighs around 2 lb versus a prior cooling vest that had them both on the front and the back and weighed 8 lb that was very bulky and made me feel like a bulky football player. For me, heavy weight can make my fatigue worse/drain me faster and that is one of the reasons I did not like the heavier one. I wear this when I need it (now if I am outside for any length of time in summer or attempting to do yard work) and have to wear it when I train with my personal trainer twice weekly at the gym. It is not really noticeable visually wearing under a t-shirt unless it is body hugging, it has a relatively low profile.” – Kim
“It looks like they changed the design since I bought it so you are using the smaller individual packs versus 4 larger packs. Remember, smaller compartments will melt faster and not last as long. Cooling vests are nice because you stay dry. Store in freezer/fridge so always ready to go.” -Kim
2. Products to Try
A list of products that we’ve heard about, but so far we don’t know of anyone who’s tried them; also products that maybe we have tried and tested, but don’t really have a specific link for.
Please use the search method or store of your choice. You can copy/paste from here to get more targeted results
Folding Hand Fan – the manual kind
“Carrying a portable foldable hand fan can go a long way. Incredibly grateful I bought mine into Target field. Lightweight, cheap, takes up little space and easy to transport.” – Kim
Portable Rechargeable Handheld Fan
I never use it because – it needs to be charged, bulkier and heavier than the foldable fan. – Kim
Portable Rechargeable Neck Fan
Click the link here for Bob Alvord’s top choice. Then, scroll down to section 3 to see his genius way of using it.
“I am not a fan of the neck fans because they tend to be loud (so harder to hear) and don’t give enough breeze for me to be very effective. May be effective for others that are not as extreme as me.” – Kim
I have one that I use on occasion. It’s a cheap one. I like it well enough to bring with me on the rare summer hike, but not enough to recommend a specific one. It’s a little bulky and makes my neck sweaty where it hangs on my neck. Can also be a little bit loud, but I don’t usually mind. – Hannah
Cooling wrist wraps
Cooling Bra inserts
Cooling Hats
With a built-in fan
Water activated
Or just the gel inserts
Cooling headband/ wraps – can also search for cooling migraine relief
Cooling Scarves / towels
Cooling Eye Masks – Great for migraines too
Cooling Vests – see above for specific products
Cooling Pad for Car
Gel seat pads
Electric car seat covers
Cooling Pad for Seat– This set of search terms brings up a lot of the same links as above
Cooling pillowcases – side note- this will be my next purchase after the success of the cooling blanket I recently purchased! – Hannah
Cooling pillows
Cooling mattress
Cooling mattress topper
Cooling blanket
Bamboo sheets and bamboo pajamas
“If have issues being overheated while sleeping, I highly recommend getting both bamboo sheets and pajamas. They not only keep you cooler but will help wick away the moisture so you don’t feel drenched when you wake up.” – Kim
REON POCKET PRO Plus
Not yet on the market, but Barry Blomquist (Prostate Cancer community) mentioned it. Sensors actively adjust to temperature shifts maintaining your personalized comfort, while dual thermo-modules deliver efficient on-the-go cooling and warming.
You’ll find tips + even more links to cooling products they recommend (including cooling bra inserts, eco- friendly products, cooling hats & wrist wraps, & others). Some even come with discount codes!
Advice for sleeping at night. Lots of mention of products that I’ve listed above
Tips for Sleep
“The ceiling fan is your friend. I have also learned I need to turn the air down to 70 degrees from 72 degrees when I sleep because it is still too hot where my body touches the mattress.” – Kim
I use a slim floor fan, but have it set up on top of a nightstand at the foot of my bed. I also turn the AC down to 71F at night. I also make it a habit to use lotion on my feet and legs right before I get into bed. It has a soothing, cooling effect that keeps the heat away for a while – especially with the fan blowing directly on me. – Hannah
Tips & Habits to Sprinkle Throughout Your Day
“Drinking heavily iced water/beverages or frozen food can go a long ways. Most metal water bottles the ice will last most of the day.” – Kim
“I use floor fans when I am hanging outside on the highest setting. Helps keep bugs away too. Need outlet/extension cord available to access electricity. Can be kinda loud.” – Kim
Kim’s Ice Crown
“A new thing I tried 3 weeks ago because using the cooling vest, heavy iced drinking water, and a spray bottle/fan that I keep in the fridge and add ice cubes before I left the house was not enough to keep my cool enough while training for 30min (I told you it was extreme!) I take bandana, open it up, line up ice cubes to two opposite diagonal corners (10-12 ice cubes for me from my ice maker), roll it up and tie around my head or neck. Will last about 30 -45 min wearing indoors. You will be wet from it and dripping with water and your t-shirt will get wet but that is okay for me during the summer. Store in ziplock bag when traveling with it and make ahead of time and store in freezer. I have it my thermapparel cooler when transporting so it doesn’t melt until I put it on. I call it my ice crown. Leave some space at the ends so you can tie it around your head or neck. Also rewetting bandana with icy water if hiking, etc helps after ice cubes melt. Cheap if you have ice maker but you will get wet from the chest up and doesn’t last as long as a cooling vest.”
Bob Alvord’s (High-Risk Prostate Cancer community) neck fan- towel combo
Bob Alvord with his cooling towel and rechargeable neck fan combo
“… I use a well hydrated cooling towel, large one and a wearable neck fan to alleviate hot flashes. You wear the fan around your neck and then place the cooling towel over the fan. This system greatly lowers the towel temperature. My measurement of the towel with the fan is around 65 degrees, using a thermometer. Placing the towel against your corotid, with a 65 degree temperature source is enough to lower exposure to heat. ”
Have a product, tip or URL to recommend? Email me at Hannah@ancan.org
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 28, 2026
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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 Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: Dr. Paul allowed PSA to rise to 160, and then kept 3x Pluvicto back that he now plans to use!
Topics Discussed
Newbie has local care that is not up to SoC; “Oldie” needs to replace Dr. E; how frequently and which scans when monitoring during drug holiday; successful AUS installation; Gent is successfully post RT/HT but when will T. return?; v. high cholesterol calls for statins – don’t fuss about fatigue side effects; mirabegron has few side effects for our user; clinical trial delay is a stressor; PSMA scan has great results… but cardio issues are for another group; remaining Pluvicto sessions preferred to SBRT; PSA got to 160 on drug vacation; E2 discussion featuring Dr. Paul coming soon – see Reminder;
Chat
AnCan – rick sent: 3:08 PM
The E2 Session with Dr. Paul is on Thu Aug 20. My apologies for the error.
Bob Schwartz, USN, Venice, FL. sent: 3:09 PM
No apologies necessary. Nice to see that your Human.
Jim Marshall, Vet Sup Grp. Moderator sent: 3:28 PM
Dr Channing Paller, Sibley Hospital, Johns Hopkins. Wash DC
Federal Blue Cross Insurance is top notch.
Morgan Brooke sent: 3:30 PM
Can Rick speak more about what is wrong with the 6-month Eligard shot?
I believe the Predinsone is to assist with controlling blood pressure
Jeff Marchi – San Francisco sent: 3:32 PM
the prednisone is to restore cortisol which zytiga stops production of without cortisol you have severe fatigue
Wes – San Diego sent: 3:33 PM
PSMA could have a false positive for the shoulder, but that might depend where the other sites are.
Jeff Marchi – San Francisco sent: 3:34 PM
rick does not feel the 6 month shot lasts the full 6 months (Ed: ‘may not’)
I had a 6 month shot for 6 years, had testosterone tests every month had it stayed undetectable the whole 6 months results may vary
Wes – San Diego sent: 3:38 PM
I was on federal BC/BS, and was on Orgovyx.
Bob Faulkner sent: 3:38 PM
I am a new member also Bob Faulkner
AnCan – rick sent: 3:41 PM
Bob – we can’t assure new men of time unless here in the first 5 minutes. Either we may be able to take you at the end, or we can definitely do an intake next week.
Wes – San Diego sent: 3:53 PM
Orgovyx and other ADT have potential cardio side effects, lengthened ST being one. I chose Orgovyx because I had cardio issues, and Orgovyx had fewer issues than Firmagon. Ironically, PSA did not drop sufficiently, so after about 6 weeks, I switched to Firmagon.
Rick S sent: 3:54 PM
I have a lot to learn!
Pierre D., Olean, NY sent: 3:56 PM
Another advantage of Orgovyx over the injectables is if you do develop side effects from Orgovyx you can stop it and it’l clear out of your system within weeks not months.
Wes – San Diego sent: 3:57 PM
V true; Firmagon has 1/2 life of 53 days.
Jeff Marchi – San Francisco sent: 4:03 PM
Orgovyx half life is 25 hours
AnCan – ricksent: 4:11 PM
Artificial Urinary Sphincter AUS
Morgan Brooke sent: 4:14 PM
Thank you all for your time. I need to run. I’ll to join more often.
From PCa commentary – After 3 – 9 months of ADT nearly all men fully recover by about 10 months; – After 18 – 24 months of ADT only 60% fully recover by about 3 years; and – After 36 months of ADT exposure only 50% fully recover by ~ 5 year
Wes – San Diego sent: 4:31 PM
Thanks Jeff, that conforms to my experience after 8 months on Orgovyx and Firmagon. After about 60 days being off, I felt substantially better (feel more like myself, peripheral vision is better, libido slowly coming back)
Repatha has far fewer side effects than statins. Repatha is remarkably expensive.
Alfredo in Sacramento sent: 4:33 PM
yes, my wife had bad reaction to Repatha but does fine on Praluent
Wes – San Diego sent: 4:35 PM
I had a bit of not having land legs on Repatha; not bad, but dropped LDL from 100+ to 30.
Steve Roux, Up North, Michigan sent: 4:41 PM
I need to run. As usual – GREAT meeting gang! See all of you next week.
Alfredo in Sacramento sent: 4:41 PM
my wife had total cholesterol of 309 mg/dl 5 years ago (did not tolerate any of several different statins); 180 mg/dl 2 weeks ago on Praluent . we believe she has Familial (inherited) hypercholesterolemia
Jeff Marchi – San Francisco sent: 4:46 PM
I have low cholesterol and my doctor put me on a statin and it crippled me. added at least 10 years to my life while on it. Friends asked my wife if I had much more time.
Active Surveillance Prostate Cancer Video Chat, July 22nd, 2026
AnCan is grateful to the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics, Telix, and Foundation Medicine.
Active Surveillance (AS) for low-risk prostate cancer involves unique challenges compared to other treatments. This online support group is designed for men and their caregivers who are currently on or considering AS. We hold four meetings monthly, recording only the second and fourth sessions. Our discussions cover a wide range of topics, including anxiety management, biopsy experiences, and the decision-making process around continuing or discontinuing AS. Newcomers are given priority to share their experiences, so we encourage you to join us.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 20, 2026
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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 Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
This newbie MD lacking his own records; starting HT may cause inflammation and urinary issues; side effects from salvage RT; high liver markers persist but fall with pause in HT; medical leave makes all the difference; addressing hot flashes; Reel Recovery gets more AnCan accolades; alternating annual whole body MRI and PSMA scan when stable; 6 month shot with no buffer administered???; successful video chat with dr. E; maybe mono daro may be easier to follow than switching Orgovyx to E2; consider wide boar or open MRI if claustrophobic
Chat
Ancan sent: 5:13 PM
I have a nutrition question about eggs and poultry skinless. Choline causing aggressive prostrate cancer or recurrence according to pumped.
Jim Marshall, Vet Sup Grp. Moderator
sent: 5:32 PM
meeting 1st & 3rd Mondays at 08:00pm ET – 2nd & 4th Tuesdays at 06:00pm ET. Jim
It may be coincidence but my hot flashes increased in intensity and frequency after adding Nubeqa to Orgovyx. I had been on Orgovyx only for 7 months prior.
Jim Stewart Reno, NV sent: 6:46 PM
signing off, thanks again for all the input!!!!
Stan Friedman sent: 6:48 PM
where was this?
Jeffrey G sent: 7:11 PM
Hey – I didn’t ask for time. It must have been the other Jeff
Eric Curtis sent: 7:14 PM
Thanks again guys. Catch you next time Monday roles around.
Bob Rieder – Eden Prairie, MN sent: 7:21 PM
Thanks to everyone for the discussion tonight! Signing off for this session.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, July 14, 2026
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
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 Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: If radiation forces a catheter, do you continue with the treatments?
Topics Discussed
Newbie hangs up on us; how frequently do you need a PSMA scan’; make your personal evaporative cooler; switching to estrogen or adding patch for hot flashes; rash from apalutamide; MSKCC comes up with options – RLT, chemo or more HT; bicalutamide tides Gent over to RT + Lupron but Flomax needed; moving to 1/4 dose abi protocol; curious response to DEXA scan; PSA holding low after RP and pre RT; holding steady but more spot RT needed for shoulder; debulk RT calls for catheter after – check with GU MO before continuing
Chat
Barry Blomquist sent: 3:15 PM
How you doing?
Jeff Marchi – San Francisco sent: 3:17 PM
hey Barry, who you asking
Barry Blomquist sent: 3:26 PM
Sorry
Ancan sent: 3:26 PM
Lol
Jim Marshall, Vet Sup Grp. Moderator sent: 3:38 PM
Have a Vet retired over in Estonia, Stage IV who has been on Double Dose Bicalutamide for many years. He is happy with it, have explained the alternatives but he is happy with how he is being treated. Jim Marshall.
Jeff Marchi – San Francisco sent: 3:47 PM
I know a guy that used casodex on and off for 5 years. would stop and PSA would rise and he would go back on Eventually needed an ARPI
Jay in MN sent: 3:58 PM
I cool off by jumping in the lake in MN🤪
Steve L sent: 4:03 PM
The Armstrong Study only address patients with nmCRPC and mCRPC. I am mCRPC which is not part of the conclsion of the analysis. Are there any studies appropriate for me
correction follows
Armstrong study is of mHSPC ans nmCRPC.
Copy of Conclusion of Armstrong Study follows “Given the frequent discordance and poor prognosis of imaging-based progression in the absence of PSA changes during enzalutamide treatment in mHSPC and nmCRPC, periodic surveillance using imaging is recommended.”
I need to jump onto another Zoom session at 8p Eastern. Good night, fellas.
Wes – San Diego sent: 4:56 PM
Damn, figured this out; long time; got an update, mostly all good; maybe next week.
Wes – San Diego sent: 5:02 PM
Curious to see why radiation to help issues of bladder/colon; sounds counter-intuitive.
Bob Alvord sent: 5:12 PM
Thank you for time to discuss my situation. Gotta run now and see you next week.
phil sent: 5:16 PM
Thank you for taking time for me and good advice. Planning on getting more radiation, hopefully at least 5 more sessions on shoulder. if more needed will follow up. Thanks again. and also staying on until clean
Judy is a retired educator, grandmother, and a passionate traveler, who is an 11-year survivor of Chronic Lymphocytic Leukemia (CLL). The article explores Judy and her husband’s decades of exploring the world together, and both of their individual cancer stories. Judy was a care partner to her husband, Michael, with advanced prostate cancer, who passed from aggressive pancreatic cancer in September 2023.
After her diagnosis, Judy became heavily involved with the CLL Society, volunteering as a support group facilitator to help educate and build community among other patients. She now moderates two AnCan groups, Care Partners and Blood Cancer.
“Judy’s message to others with CLL, whether newly diagnosed or, like herself, living with the disease for a decade or longer: Stay hopeful and stay educated through groups like CLL Society. “Researchers are continually working to identify and develop new treatment options for CLL,” she says. “Staying informed about the latest research and treatment advances can help empower people who are managing their condition and help them sustain hope to continue pursuing what they love.”
Mark and Kathy Baldridge are avid birders, and as a result, frequent visitors to “Deep Southern Arizona” from their home in University Place, Washington. You may have seen them in an AnCan Group – we’ve been supporting the Baldridges since 2021.
We hear it time and time again – keeping cool is not easy.
