We also learned recently that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time on our YouTube Channel – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick: We all know this group is for men living with advanced prostate cancer. It’s also for men lviing with advanced bladder cancer …. listen in to find out why! (rd)
Topics Discussed
PROMISE may be the ticket; advanced bladder cancer may not be so different from PCa; disease recurs after 20 years; Provenge on the Islands; dexamethasone vs prednisone with abi; dex and heart rate; nocturia and how to deal with it; Agent Orange and otehr VA issues; BAT experience; entering hospice; GU Med Onc recommends RT
Chat Log
Herb Geller (to Everyone): 4:10 PM: On a Mac, the chats are in Documents>GoToMeeting Chats
Peter Kafka (to Everyone): 4:13 PM: psma scan time
Peter Kafka (to Everyone): 4:15 PM: Oliver Sator at Tulane would be a good option.
Carl Forman (to Everyone): 4:18 PM: I had tried to get a telemed appt with Sator for a second opinion, but was told he only sees new patients in person. Didn’t want to get on a plane to see him.
John Antonucci (to Everyone): 4:20 PM: HIya Jake
Jake Hannam (to Everyone): 4:20 PM: pylarify
Alan Moskowitz (to Everyone): 4:22 PM: Could he have had C 11 Choline scan?
Joe Gallo (to Everyone): 4:27 PM: Invitae
Jake Hannam (to Everyone): 4:28 PM: I might have some input on oxycodone. I’m an old pro.
Julian Morales-Houston (to Everyone): 4:30 PM: I got the Color this week?
Bill Lewis (to Everyone): 4:34 PM: I’ve done more than 8000 self catheterizations. lewis.bill@gmail.com
AnCan – rick (to Everyone): 4:45 PM: You ain’t going to hear this type of stuff anywhere else, Gents!!!
Alan Moskowitz (to Everyone): 4:48 PM: Avoid any gas causing foods –
Mark Horn (to Everyone): 4:53 PM: Many thanks everyone
Bill Lewis (to Everyone): 5:02 PM: To Steve: my oncologist would give you a special version of Chemo, including Taxotere and 2 other drugs right away. Love to talk.
Jake Hannam (to Everyone): 5:02 PM: axumin PSMA Pet
Vic (to Everyone): 5:05 PM: from the PEACE 1 study/trial and be sure to talk with the GU MO
Erwin Zoch (to Everyone): 5:10 PM: I suggest that unfamiliar acronyms be defined when 1st used for newcomers e.g,, SBRT is Stereotactic Body Radiation Therapy (or RadioTherapy).
Bob Smith (to Everyone): 5:12 PM: Regarding Steve’s comment on head bump, is it common for concussions to lead to PCa brain or other?
Herb Geller (to Everyone): 5:13 PM: I have not seen any suggestion that a concussion can promote a PC metastasis
Peter Kafka (to Everyone): 5:13 PM: I have never heard of incidents like this leading to cancer metastasis. But I am no expert.
AnCan – rick (to Everyone): 5:16 PM: Bob – not sure there is any correlation that I have heard of.PCa spreads without any interference from outside forces – unfortunately.
Steve Barber (to Everyone): 5:22 PM: My imaginatve, “pet” theory is that 35 years of cell phone use/radiation conpromised the integrity of bone in my skull on the right side.
Vic (to Everyone): 5:24 PM: what study supports the abi with meals?
Jake Hannam (to Organizer(s) Only): 5:30 PM: bone scans are notoriously insensitive
AnCan – rick (to Everyone): 5:31 PM: Vic – we have articles around abi with food. But only re. reducing the dose with food.
Jim Marshall, Alexandria, VA (to Everyone): 5:41 PM: Jiimmy – Count your blessings you ARE. Think of what happens if you are not. Jim Marshall
Joel Blanchette, Reston VA (to Everyone): 5:41 PM: I am on the exact schedule as Jimmy and Herb.
Julian Morales-Houston (to Everyone): 5:42 PM: This is my schedule to a T!
Stan Friedman (to Everyone): 5:43 PM: I have obstructive sleep apnea and the therapy reduces the number of times I get up to one, maybe two.
Vic (to Everyone): 5:44 PM: I’ve had some success just ignoring the urge to go an being able to fall back to sleep without leaking
AnCan – rick (to Everyone): 5:44 PM: Myrbetriq
Bill Lewis (to Everyone): 5:47 PM: Food added to full-dose Zytiga: PMID 25777155; DOI: 10.1038/pcan.2015.7 — Bill Lewis
Steve Barber (to Everyone): 5:47 PM: Thanks to all! At this time I must get off the meeting. I look forward to another visit and appreciate all the input today. Steve
AnCan – rick (to Bill Lewis): 5:49 PM: Tx Bill – we will definitely take a look at the refernce. I am sure Len and Herb are on it.
Len Sierra (to Organizer(s) Only): 5:51 PM: I just did. 2015 study with 41 patients. They claim 16% better response on food with full dose. No increase in tox. Hard to believe.
Len Sierra (to Organizer(s) Only): 5:53 PM: I’d need to read the full paper. And see if anyone was citing this study.
Herb Geller (Private): 5:53 PM: IT is a small retrospective study from 2015, They say that abi with food lowered T, so there must have been an issue with their initial therapy.
AnCan – rick (to Organizer(s) Only): 5:53 PM: Maybe you can look closer ….. But even so, changing dose like that must inc. medical advice. Did these men fail abi then up the dose.
Herb Geller (to Organizer(s) Only): 5:54 PM: T is a small retrospective study from 2015, They say that abi with food lowered T, so there must have been an issue with their initial therapy. It is totally flawed
Peter Kafka (to Everyone): 5:55 PM: Don’t forget the water quality at Fort Bragg
Jake Hannam (to Everyone): 5:57 PM: Military water quality is notoriously bad and still being EPA-remediated across the country
Herb Geller (to Everyone): 5:59 PM: I looked at the abstract of the study. Thay say that abi with food caused a decline in T levels as well as PSA in a small percent of men. The fact that T declined suggests they were undertreated before switching to food. T should be undetectable with any effective dose of abi
Joe Gallo (to Everyone): 6:01 PM: Veterans Population ~19,000,000
Veterans in VHA System ~9,000,000
Veterans in VHA with Prostate Cancer 488,984
Veterans in VHA with Metastatic Prostate Cancer 16,282
Veterans diagnosed with Prostate Cancer each year ~15,000
Cumulative (10year) Cost of High Risk PCa Patient2
~$200,000
Total Economic Burden for High-Risk Patients in VHA ~$3,256,400,000
Vic (to Everyone): 6:02 PM: Is a vet rep needed for St. Louis, MO.? If so, who should be contacted?
Joe Gallo (to Everyone): 6:03 PM: Vic and anyone interested let me know and I will forward the info. joeg@ancan.org
Vic (to Everyone): 6:04 PM: please do Joe, thanks
Vic (to Everyone): 6:14 PM: the nasa astronauts used a penis prosthesis for urinating, perhaps that would be available and helpful for you Jake
Erwin Zoch (to Everyone): 6:15 PM: Thanks to all of you for this amazing information! Thanks to Jay for encouraging me to join this group. I hope to be with you again soon.
Jay Mills (to Everyone): 6:16 PM: Best of luck tomorrow Erwin with your appointment.
Peter Monaco (to Organizer(s) Only): 6:18 PM: Need to sign off gents! I will handle all recordings this week. Best regards and Happy New Year!
Jake Hannam (to Organizer(s) Only): 6:19 PM: you too peter and thanks for your help
We also learned this week that in 2021 almost 15,000 visitors have watched 258,000 minutes in viewing time – THANK YOU!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer. To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: Is palliative care the right call or should it be hospice? We also pick apart the abi steroid recommendations. (rd)
Topics Discussed
Abi fails for denovo Mx Newbie; setting up a medical team away from home; best steroid protocol for abi; Pylarify is widely available – advocate for it; palliative vs hospice care and when to switch; abi fails for denovo Mx Oldie!; high risk man needs to watch the urologist pushing surgery; is a new ‘bone drug’ right for PCa?; cabzitaxel maintains stability – no significant results yet; Novartis/AAA helps our guy get into 2nd Lu177 trial; Ac225/pembro trial not producing results.
Chat Log
Mark Perloe, MD Atlanta (Private): 4:22 PM: If the tissue is negative shouldn’t germline be negative as well?
AnCan – rick (to Mark Perloe, MD Atlanta): 4:24 PM: Yup – exactly; but there may be a lot more in his somatic test
Mark Perloe, MD Atlanta (Private): 4:25 PM: too many different companies offering different tests.
Jim Marshall – Alexandria, VA (to Everyone): 4:57 PM: was just switched from 10 to 5mg per day because the current recommendaition from Janssen for CSPC is 5mg and CRPC is 10 mg
James Barnes (to Everyone): 5:01 PM: Thanks Jim. Just checked and my dosage is 5mg as well.
Herb Geller (to Organizer(s) Only): 5:04 PM: Based on Jim’s comment should I take 10 mg of prednisone
Len Sierra (to Organizer(s) Only): 5:07 PM: I would, Herb.
AnCan – rick (to Organizer(s) Only): 5:09 PM: I have never heard that difference …. 5mg vs10 mg. That said – my advice would be to discuss with your doc, Herb
Herb Geller (to Organizer(s) Only): 5:15 PM: The package insert for CRPC says 5 mg twice a day.
Len Sierra (to Organizer(s) Only): 5:17 PM: Herb, Jim said Janssen says this is the current recommendation (10mg). Why not call them?
AnCan – rick (to Organizer(s) Only): 5:17 PM: That was the original approval; since then 5 mg seems acceptable as you saw. Only one person takes 10 mg
Len Sierra (to Organizer(s) Only): 5:25 PM: Did Larry Fish say Hospice will not “allow” any care, even pain relief?? That doesn’t sound right.
Herb Geller (to Organizer(s) Only): 5:26 PM: They will do pain relief but not continue survival meds
Peter Kafka (to Everyone): 5:26 PM: All hospice care is different
Pat Martin (to Everyone): 5:28 PM: External catheter worked for me so I could get out and about. External hocked to tubes and a leg bag.
Cal Van Zee (to Everyone): 5:36 PM: Herb: My counselor taught me the future doesn’t exist, only now. FEAR stands for future events appear real. I choose every day to be grateful that I’m here today.
Stephen Saft (to Everyone): 5:39 PM: Eckhart Tolle writes on this. Book called the Power of Now is fantastic.
Len Sierra (to Everyone): 5:40 PM: Yes, I read that book and it is excellent.
Stephen Saft (to Everyone): 5:42 PM: To a man with a hammer everything looks like a nail. Urologist is not the only one to listen to in this situation.
Pat Martin (to Everyone): 5:54 PM: What I did is contact the practice I was transferring to and they contacted my local urologist. And it happened without my involvement
Julian Morales – Houston (to Everyone): 5:54 PM: Got another meeting to go to. always good meetings. thank you
Stephen Saft (to Everyone): 5:55 PM: I got in the habit of taking a disk copy with me whenever I get a scan.
Jake Hannam (to Everyone): 6:00 PM: I love all you guys. Just saying …
Jim Ward (to Everyone): 6:00 PM: Evenity (romosozumab)
Pat Martin (to Everyone): 6:02 PM: gotta run. Catch everyone next week
Peter Monaco (to Everyone): 6:02 PM: Right back at ya Jake!
Herb Geller (to Everyone): 6:05 PM: Romosozumab causes ONJ equivalent to others
Jim Ward (to Everyone): 6:07 PM: Thanks, Herb.
Paul Freda Florida (to Everyone): 6:17 PM: Have an online Calculus lesson to do. See y’all next week.
Jake Hannam (to Everyone): 6:20 PM: take care Paul!
On December 1st, we had Dr. Kerry Courneya (Professor, Faculty of Kinesiology, Sport, and Recreation at University of Alberta) give a talk to our AS group titled “Exercise After Prostate Cancer:Active Surveillance and Beyond”
Dr. Courneya had one message: Don’t take your cancer laying down.
He maintained that research has shown “exercise is the single most important thing” a cancer patient can do—even more important than diet.
His research has shown patients with prostate cancer (low-risk to high-risk), lymphatic cancer, and other cancers benefit from exercise.
The most recent study by his group in Edmonton, appearing in JAMA Oncology, showed for the first time that High Impact Intensity Training–bursts of exercise rather than a continuous approach—can help suppress the growth of prostate cancer cells in men on active surveillance. (https://jamanetwork.com/journals/jamaoncology/fullarticle/2783273)
The ERASE study was the first randomized controlled trial to examine the effects of exercise in men with prostate cancer on AS.
There’s more to the exercise story than suppressing prostate cancer. The biggest risk to men with low-risk prostate cancer is heart disease. The study showed that not only does exercise suppress prostate cancer cells but it also helps with cardiac measures.
He said also exercise relieves anxiety and depression, helping men stay on AS longer.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 2021
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick:AnCan is honored with the first time presence of a PCa doyen this week. Even he is overshadowed by conversation between two men with 60+ chemo treatments between them! (rd)
Topics Discussed
Snuffy lives through this PCa elder; testosterone supplementation; keep an eye on bone densitty; lo-fat abiraterone protocol; cryo alternative for spot Tx of lesion; GERD effects seveal of our guys; cabaziatxel + carboplatin protocol for small cell/NE disease; CEA as a marker; TP53 + PTEN cast suspicion on PCa type; diet may slow growth; is AUS causing fevers?; comparing notes on mutliple chemotherapies; drug holidays; lesions disappear with treatment …. but another shows up.
Chat Log
Larry Fish (to Everyone): 4:15 PM: lupron before casodex?
Joe Gallo (to Organizer(s) Only): 4:16 PM: PSMA?
Larry Fish (to Everyone): 4:18 PM: did they try stopping casosex?
Herb Geller (to Organizer(s) Only): 4:19 PM: Bless him! Getting tooth implants at 89!
Jake (to Organizer(s) Only): 4:20 PM: Is that BAT?
Len Sierra (to Organizer(s) Only): 4:20 PM: No, Andro-gel.
Herb Geller (to Organizer(s) Only): 4:20 PM: Its a modified BAT but it depends upon the dose of andro-gel
Jake (to Organizer(s) Only): 4:21 PM: thanks
AnCan – rick (to Organizer(s) Only): 4:24 PM: Not really BAT -BAT uses extremes and swamps AR receptors. This is a crazy Snuffy protocol
Pat Martin (to Everyone): 4:25 PM: Any genetic testing?
AnCan – rick (to Everyone): 4:26 PM: This Testosterone Tx is highly controversial!!
Jimmy Greenfield (Private): 4:27 PM: Snuffy Myers has left quite a footprint! I almost feel like I know him.
AnCan – rick (to Jimmy Greenfield): 4:28 PM: Some crazy ideas and some that proved viable
Dennis Correia (to Everyone): 4:51 PM: Journal of Clinical oncology March 28, 2018 for info the Abi low dose with low fat breakfast.
Len Sierra (to Everyone): 4:51 PM: From Dr. Russell Szmulewitz, (U Chicago) director of the clinical trial showing equivalent effectiveness of Zytiga with food at ¼ the dose with a low fat meal. Abiraterone, approved in 2011 for the treatment of metastatic prostate cancer, has a “food effect” that is greater than any other marketed drug. The amount of abiraterone that gets absorbed and enters the blood stream can be multiplied four or five times if the drug is swallowed with a low-fat meal (7 percent fat, about 300 calories). That can increase to 10 times with a high-fat meal (57 percent fat, 825 calories).
Pat Martin (to Everyone): 4:52 PM: I was under the impression that the docs did not think the patients would follow precise instructions.
Jake (to Organizer(s) Only): 4:56 PM: omeprazole (Zantac?) might be the answer
Joe Gallo (to Organizer(s) Only): 4:57 PM: Prilosec
Herb Geller (to Organizer(s) Only): 5:03 PM: I just read an article that CEA with PC is a very bad prognostic factor
Len Sierra (to Organizer(s) Only): 5:04 PM: I agree, Herb.
Herb Geller (to Organizer(s) Only): 5:05 PM: Although another paper says there is no correlation with OS. So no real data.
Herb Geller (to Everyone): 5:14 PM: Initial Management of Noncastrate Advanced, Recurrent, or Metastatic Prostate Cancer: ASCO Guideline Update Abiraterone 250 mg daily with a low-fat breakfast has been examined as an alternative to abiraterone 1,000 mg on an empty stomach for men with metastatic castration-resistant prostate cancer (CRPC) and was shown in a small phase II trial to be noninferior based on the PSA response rate over 12 weeks…….. read more at https://ascopubs.org/doi/pdf/10.1200/JCO.20.03256
Walter Dardenne (to Everyone): 5:51 PM: I have to leave, Happy Thanksgiving to everyone.
AnCan – rick (to Everyone): 5:51 PM: Same to you Walt – tx for coming
AnCan – rick (to Everyone): 5:52 PM: where else can you hear two guys speak with so much chemo under their belt!?!
Joel Blanchette, Reston VA (Private): 5:54 PM: OK
Stephen Saft (to Everyone): 5:55 PM: I have a friend who has PSA in the 1500-2500 range. He has had few symptoms of the disease and no metastatic disease.
Pat Martin (to Everyone): 5:57 PM: Ya’all have a great Thanksgiving. Gonna run. See you next week
AnCan – rick (to Jim Ward): 6:08 PM: I’m telling Alexa that your pussy cat showed up on the call
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 9, 2021
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/
Editor’s Pick: The importance of having a GU Med Onc (genitourinary medical oncologist) comes up more than once. And keep good records!(rd)
Topics Discussed
If chemo didn’t do the trick….; uncertain if trial is effective; draft a GU med onc – quickly!; 3 yrs off HT and treatment holding; in the midst of Provenge; the importance of good record keeping; PSAMA baseline scan; the PROMISE germline trial
Chat Log
Edward Clautice (to Everyone): 4:15 PM: 3/29/201 PSA 8.9 5/6/201 Biopsy 8 cores Gleasons range from 3+3 to 4+5. Average Gleason 7.5. Also has perineural invasion
6/29/2015 Urologist removers prostate and some associated nerve (the one which controls erections) are removed at surgery; Inova Hospital Fairfax VA Lymph nodes biopsied. 0/3 with cancer Seminal vesicles are involved Prostate. Gleason 4+5 Positive margins seen. Tumor volume 70%
7/30/2015 – 10/?/2015
Begin radiation treatments of the prostate bed Receive a whole bunch of radiation. Doc says, never again get radiation there.
10/16/2015 PSA 0.4
1/28/16 Switched to Dr J Aragon-Ching, Oncologist PSA – <0.1 Also receive Lupron Testosterone 6 ng/L
5/15/2018 Continue with DR Aragon-Ching getting Lupron and generally getting <0.1 on PSA
5/15/2018
Move from Fairfax to central Kentucky Sign up with Dr. Monte Metcalf. Regular oncologisy at regular hospital
8/?/2018 PSA begins to rise. Not sure how high. Begin Casodex. PSA drops
12/?/2019 PSA now rising again Switched over to Abiraterone. Dr Metcalfe seems not as concerned as I am . Abiraterone works for maybe 6 months
6/?/2020 PSA begins to rise again I decide to switch over to that giant teaching hospital (U of Kentucky) I keep driving past. Also I now have much better medical insurance so I actually can switch over.
11/2/2020 PET scans, CT scans, every other kind of scan Lots of bone tumors, not a lot of soft tissue tumors (there were some reasons for this next delay, and honestly I forget exactly what they were) A couple times Dr PW takes my scans to the weekly med school oncology faculty meeting. “Tumor of the week club.”
2/?/2021 Bone biopsy. Shows tumors to be metastatic. PSA running about 7; which Dr PW says is really low compared to the tumor mass I have. Dr PW has senior UK pathologist personally check biopsies to make sure it is prostate cancer and not “small cell.” Senior pathologist confirms this is true.
4/15/2021 +/- Stop abiraterone Begin Docetaxel every 3 weeks, for 10 treatments Zoledonic acid (?for bones) every 6 weeks and keep getting anti-hormone shot, elegard , every 12 weeks Also prednisone PSA 7.11 I am allergic to docetaxel and it tries to stop me from breathing. Docs give me stuff so this does not happen any more. Minimal side effects that stop me from wanting to get more treatments of docetaxel
8/12/21 PSA 4.88
11/3/2021 Docs just posted results of yesterday’s CT scans and nuclear medicine scans PSA 3.7 Scans show no soft tissue tumors Scans show lots of widespread bone tumors. “Impression: Widespread bone metastases.” “New subtle foci of….” 4 or 5 places “Bones/joints: Focal mildly intense increased uptake involving……” a four line list of different bones. “Compared to previous: Progressive bone metastases.
11/4/2021 Get last docetaxel Talk with Dr PW about what comes next
Note: Up to this time I have zero symptoms of pain from tumors or anything else in my bones. I exercise and lift weights regularly.
Vic (to Organizer(s) Only): 4:32 PM: Is sequencing of tumor the way to determine if the cancer as advanced from MSPC to MRPC?
Vic (to Organizer(s) Only): 4:34 PM: Are any LU-177 trails open to MSPC?
Len Sierra (to Everyone): 4:42 PM: Vic, no, sequencing is done to see if there are mutations for which there are therapies that target that mutation.
AnCan – rick (to Vic): 4:44 PM: Vic ….. PSA rising is the sign of hormone resistance. The only trial available to HSPC requires no prior hormone therapy
Jake (to Organizer(s) Only): 5:07 PM: No, I checked. It actually recorded 49 seconds including my apologies and the discussion about logging off and back on. Weird! You made the right decision since it is too undependable …
Vic (to Organizer(s) Only): 5:14 PM: what is bi-polar androgen therapy? Eligard plus Abiraterone?
Joe (to Everyone): 5:18 PM: gotta run gents, great to see y’all again
Rusty (Private): 5:23 PM: BBL have another meeting going on.
Len Sierra (to Everyone): 5:23 PM: Carlos, this comes from the Provenge Treatment Guide: How to Prepare:
Stay hydrated by drinking more water in the days leading up to your
appointment
Avoid caffeinated beverages on the day of your appointment
Eat calcium-rich foods such as dairy products, dark leafy greens, or
supplements
Eat a hearty meal within four hours of your appointment
Wear loose-fitting clothes, with sleeves that can be raised above the elbow
Bring a current photo ID
Consider arranging transportation to and from the procedure
eric (to Everyone): 5:24 PM: ok thanks you.
eric (to Everyone): 5:27 PM: hey rick in order to particoate in the trail you sent me. Are you saying if I was still on the Orgovyx. I would be eligible for the Netashim trial?
AnCan – rick (to eric ): 5:27 PM: If me I would consider getting back on an LHRH drug like orgovyx ASAP. If not orgovyx or firmnagon, then be sure they give you at least 15 days of bicalutamide first. Some docs forget! you don’t nbeed with Orgo or Firma. Put pressure on them to give youa quick appt. You don’t need Song now you need a GU (genitourinary) medical oncologist
Herb Geller (to Everyone): 5:29 PM: Actually, one other person at Hopkins is Catherine Handy Marshall. She is an Antanorakis understudy and I think Carl saw her.
AnCan – rick (to eric ): 5:29 PM: Eric – if you were still on Orgovyx AND your PSA was rising you would be eligible.
Carl Forman (to Everyone): 5:29 PM: Yes I did see her; impressive.
AnCan – rick (to eric ): 5:31 PM: So here’s another name above. Catherine Handy Marshall
Pat Martin (to Everyone): 5:33 PM: See ya all next Monday.
