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 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:This week, it’s a theme – men who are clearly their own best advocate and men who just ain’t….. and don’t let a handful of difficult customers deter you (rd)
Topics Discussed
Foundation Medicine’s Next Generation Sequencing liquid biopsy ; ‘Be You Own Best Advocate; looking to bike like Dad for another 30 yrs ….at 59 ; get best information to make intial treatment decision; everone else responsible for this man’s PCa except him; when to intorduce 2nd line anti-androgen and which one; and more … abi vs enz; finishing salvage RT; let’s talk about soy; explaining RT ligands/radionuclides; yup – that pain in the neck is PCa; cabazitaxel – hopefully the plateau before the drop; holding the course with pembro despite no result; blood pressure issues; Lu177 PSMA’s a winner for this v. grateful man; palliative care, hospice or what?
Chat Log
Joe Gallo (Private): 6:08 PM: What about SelectMDx?
AnCan – rick (to Joe Gallo): 6:09 PM: ???? – explain Joe
Joe Gallo (Private): 6:11 PM: Urine based test that confirmed the probability that I had greater than Gleason 7. Proceeded to TP. A favorite of E David Crawford
ALFRED LATIMER (Private): 6:12 PM: Rick. I forget. Who does the liquid biosy?
Jake Hannam (to Everyone): 6:13 PM: ty carl – i do have a brief update but no news
Joe Gallo (Private): 6:13 PM: Measures 2 mRNA cancer related biomarkers
AnCan – rick (to ALFRED LATIMER): 6:14 PM: Foundation Medicine
AnCan – rick (to Organizer(s) Only): 6:19 PM: He is high risk with PSA 22 but borderline
Jimmy Greenfield (Private): 6:19 PM: Thirty years! I like his optimism
Len Sierra (to Everyone): 6:19 PM: Crude incidence of individual secondary cancers ranged from 0.2% to 2.3% for patients treated with external beam radiotherapy, 0.1% to 2.1% for patients treated with brachytherapy, 0.2% to 1.7% for patients treated with brachytherapy and external beam boost, and 0.3% to 2.3% for patients not exposed to radiotherapy BMJ. 2016; 352: i851. Second malignancies after radiotherapy for prostate cancer: systematic review and meta-analysis
Warren in Edmonton (to Everyone): 6:24 PM: If Len would like to chat with me after the meeting please let me know, I can offer a great deal of information on his question
Peter Kafka (to Organizer(s) Only): 6:24 PM: He should get a second opinion on his biopsy with this one
Joe Gallo (to Everyone): 6:26 PM: Epstein Consult https://hopkinsconsults.org Eric. Just ask you urologist to send. You don’t have to track down your slides
Eric Madison, WI. (to Everyone): 6:35 PM: Have a great night, guys!
Joe Gallo (to Organizer(s) Only): 6:35 PM: He will get a good discussion when he chats with Epstein
Pat Martin (to Everyone): 6:36 PM: I was dxed and had at least 6 weeks before sugery. They gave me casodex and Lupron
Warren in Edmonton (to Everyone): 7:24 PM: I have a small emergency at home and I must leave the meeting. Merry Christmas to all.
Len Sierra (to Everyone): 7:45 PM: Soy might lower the risk of other cancers
Studies among prostate cancer survivors indicate that eating soy foods may lower PSA levels. Among men in various stages of prostate cancer, those who consumed soy milk or isolated soy isoflavones saw their PSA levels rise at a slower rate. Source for my post: www.nutritionfacts.org
Alan Moskowitz (to Everyone): 7:48 PM: Regarding Enza vs Abi – my MO at MSK said “As for abi vs enzalutamide, as we discussed, never been compared head to head though my feeling is enzalutamide is a bit more active. Though they work differently, both have very high response rates up front but much lower when the other has already been used. In “switching” trials, enza has higher response rate after abi than abi after enza. To me, this doesn’t mean starting with abi is better. It’s just consistent with enza being the more active drug (easier to become abi resistant than enza resistant). But overall, it’s a tossup and I give abi to more elderly and frail and enza to younger and healthier. Essentially no difference between enzalutamide and apalutamide.”
Alan Moskowitz (to Everyone): 7:49 PM: I have to leave, thanks for the guidance.
AnCan – rick (to Everyone): 7:49 PM: Alan – this NOT about head-to-head; it’s about sequencing
John Antonucci (to Everyone): 8:02 PM: will they give a 2nd booster?
Len Sierra (to Everyone): 8:04 PM: They will give a second booster to immunocompromised folks.
Cal Van Zee (to Everyone): 8:12 PM: My blood pressure peaked at 200/100 on prednisone on 50mg Losartan w/o diruetic. After changing to dexamethasone, BP dropped to normal and I stopped Losartan.
Cal Van Zee (to Everyone): 8:17 PM: 120/80 or below: for me it was the Prednisone, not the AbiI’m still on Abi now but my PSA is rising now at 19. Most likely starting chemo first week of Jan
Jerry Pelfrey (to Everyone): 8:19 PM: Sorry I have to leave. Have a Great Christmas!
Julian Morales-Houston (to Everyone): 8:24 PM: Merry Christmas to all!
Stan Friedman (to Everyone): 8:24 PM: Merry Christmas!
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!
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: Some docs are holding off starting HT – others are jumping in quickly. We hear from both sides in this session. (rd)
Topics Discussed
Responding to a high risk PCa Dx; responding to a recurrence; treating abdominal lymph mets; EMBR discussion; PSA fluctuates on abi; pushing the envelope on starting HT; scans or no scans before starting RT; Lu177 Managed Access Trial discussed; Dr. E
Chat Log
Joe Gallo (to Everyone): 6:31 PM: www.mskcc.org/nomograms
Len Sierra (to Everyone): 6:40 PM: Pylarify
George (to Everyone): 6:40 PM: pylarify psma scan
Joe Gallo (to Everyone): 6:40 PM: PSMA PET Pylarify
Joe Gallo (to Everyone): 6:44 PM: GU Medical Oncologist
Joe Gallo (to Everyone): 6:46 PM: Ask to take a Lupron holiday
George (to Everyone): 6:52 PM: Mike, My case was like yours. My urologist surgeon sent me to interview radiation oncologists. The surgeon told me he would not do surgery, because if I had a prostatectomy there would surely be positive margins.requiring salvage radiation. He also told me that after surgery there would be incontinence, which might in time resolve. However, he said, radiation will lock in the incontinence at the state it is at the start of radiation.
Paul Freda , Lake Worth FL (to Everyone): 6:57 PM: Have to give an online Physics lesson at 9pm. See you all next week. 🙂
Peter Sherman (to Everyone): 7:01 PM: I’m pleased with my care at MSK Cal Van Zee (to Everyone): 7:05 PM: Anyone here in a PSMA Lu-617 trial?
Herb Geller (to Everyone): 7:05 PM: Yes, several guys
Peter Kafka (to Everyone): 7:07 PM: Sylvester has the record.
Jake Hannam (to Organizer(s) Only): 7:10 PM: Why do they still do bone scans these days – so old tech!
Cal Van Zee (to Everyone): 7:10 PM: For those in Lu-617 trial, would appreciate any offline feedback/side effects. I’m waiting/hoping to get into a trial.
Joe Gallo (to Organizer(s) Only): 7:11 PM: PSMA PET replaces CT and Bone scans. Assume they are trained to read them.
Pat Martin (to Everyone): 7:18 PM: Somatic gene testing
Peter Sherman (to Everyone): 7:21 PM: what is the difference between the types of genetic testing?
Pat Martin (to Everyone): 7:23 PM: Germline is what your Mom and Dad gave you. Somatic shows the mutations that your tumor has created.
Peter Sherman (to Everyone): 7:23 PM: thanks Pat
Pat Martin (to Everyone): 7:27 PM: They ran Somatic on the tumor they removed 5 year prior and determined that I might be eligible for Keytruda after ADT fails.
George (to Everyone): 7:28 PM: T3a: The tumor has extended outside of the prostate on one side. T3b: The tumor has extended outside of the prostate on both sides. T3c: The tumor has invaded one or both of the seminal vesicles, which are small bag-like organs near the bladder.
Henry (and Staci) Cornelius (Private): 7:30 PM: Rick, I have to step away for 5 minutes to tuck my daughter in. I’ll be right back.
Joe Gallo (to Everyone): 7:33 PM: https://embrlabs.com/products/embr-wave-2
Joe Gallo (to Everyone): 7:33 PM: for basic info
Peter Monaco (to Everyone): 7:35 PM: Signing off gents! See you next week!
Jeff Marchi (to Everyone): 7:39 PM: thanks George
George (to Everyone): 7:41 PM: You’re welcome Jeff.
Pat Martin (to Everyone): 7:53 PM: Does he have a quarterback?
AnCan – rick (to Everyone): 7:54 PM: Pomerantz at Dana Farber
Frank Fabish (to Everyone): 7:59 PM: got to sign off
Peter Sherman (to Everyone): 8:03 PM: got to go. Getting up early for work
Stan Friedman (to Everyone): 8:21 PM: see everyone next time.
Julian Morales-Houston (to Everyone): 8:21 PM: Dr E is my medical oncologist.
AnCan – rick (to Everyone): 8:24 PM: Eleni Efstathiuou
eric (to Everyone): 8:32 PM: Thanks for you time and good luck everyone. bye
Julian Morales-Houston (to Everyone): 8:32 PM: Thanks again – see you next week!
George (to Everyone): 8:32 PM: Thank you all. George
Nothing makes me, as AnCan’s Founder, happier than when our participants meet each other. Over 30% of our respondents said they made friends outside the groups, earlier this year.
New friends got made across international borders and they didn’t even have a condition in common!! . Mark Horn (on right) lives with metastatic bladder cancer for which AnCan does not as yet have a group. I have been supporting him personally and we keep in touch. Mark usually resides in Princeton, NJ but was on a trip to Panama to visit with his fiancee, Kalina, who lives in Brazil.
We had just seen Wang Gao Shan (on left) in our high risk/recurent/advanced prostate cancer group on Monday night, and I guessed he was in Panama too – since he could not be inTaiwan because of the time differnce and I did not think he was in Portland, OR. Gao Shan resides in one of those three sposts.
So I suggested that Mark and Kalina email Gao Shan as I didn’t have his phone number. Sure enough, there was an immediate response and last nifght, as you all see, they met for dinner in Panama City. Now I had never seen Gao Shan so I was as surprised as Mark. The story behind Wang Gao Shan’s Chinese name is for him to tell – I can just tell you that it means King of High Mountains … and that I am truly happy they got together!
And to boot, it turns out that both lived on a long street in London that runs through my teenage stomping grounds but they weren’t neighbors – that would have been too much!
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.
On November 29th, we hosted rockstar Urologist and Sexual Medicine Specialist Dr. Rachel Rubin!
Many folks living with MS rarely get the opportunity to discuss urologic issues – whether related to incontinence or sexual function. But if you attend our virtual chat support groups, you’ll know the topic comes up often.
That’s why we brought Dr. Rubin to speak openly and frank about it. No stigma, no judgment! Kim asked your questions, and got some great answers.
With all the phenomenal feedback we have received, we are in hopes to host Dr. Rubin again soon. Stay tuned!
Watch this amazing webinar here:
Special thanks to Myovant Sciences – Pfizer and Foundation Medicine for sponsoring this webinar.
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 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: This week some guys have multiple GU med oncs, others have none, and some question theirs. Be sure you have at least ONE GOOD ONE!! (rd)
Topics Discussed
Metastatic disease stabilizes for 4 years; disease progresses for young man not treated that aggresively early; abi vs enz; starting darolutamide; moving to a GU med onc; confusion reading Pylarify; recurrence ‘AGAIN’; trust your good GU med onc
Peter Kafka (to Organizer(s) Only): 6:30 PM: Jonathan Starr has been a very active advocate and regular with the Advanced support group in Palo Alto. Very knowledgable and helpful to many others. I have met Jonathan several times over the years, in person and online
Jake (to Organizer(s) Only): 6:35 PM: Great turnout tonight! 46
AnCan – rick (to Jonathan Starr): 6:48 PM: Jonathan – please give Terry my best next time you see him. And big WELCOME
eric (to Everyone): 6:49 PM: Hey I’m from Rochester, NY. Welcome
AnCan – rick (to Jonathan Starr): 7:12 PM: Ever heard of 10x docetaxel off the bat
Jonathan Starr (Private): 7:13 PM: No, I have never heard of more than 6 sessions, unless it is at a reduced dosage and higher frequency.
Jake (to Organizer(s) Only): 7:25 PM: abi after enz or vice versa?
Len Sierra (to Everyone): 7:38 PM: Alan, this article discusses the comparison of enzalutamide, apalutamide and darolutamide. It’s for nmCRPC, but it would apply to mCRPC also. https://pubmed.ncbi.nlm.nih.gov/34054…
Rich Jackson (to Everyone): 7:44 PM: Was just looking at two insurance plans and none of the ..lutamide’s above were listed. Wondering about pricing? Peter Kafka (to Everyone): 7:47 PM: It is my understanding that an MRI can’t determine if a tumor is prostate cancer or something else. It can show that something is present but not diagnose what the pathology is
Peter Monaco (to Organizer(s) Only): 7:48 PM: Rich – I checked enzi and abi in June – both cost about $2000 per month through my plan with WellCare/CVS. I eventually was able to get abby through Mt. Sinai’s specialty pharmacy for $55 per month.
AnCan – rick (to Everyone): 7:48 PM: Correct Peter – i would agree
Alan Moskowitz (to Everyone): 7:49 PM: Len, Thanks for the article.
Rich Jackson (to Organizer(s) Only): 7:49 PM: Don’t have a need for them, yet. But was looking to see what the future may hold. Thank you Peter.
Alan Moskowitz (to Everyone): 7:49 PM: Rich Jackson- sometimes those drugs are listed under brand names rather than the generic names.
AnCan – rick (to Everyone): 7:50 PM: All the 2nd line AA’s can be found with subsidies from many different places
Rich Jackson (to Everyone): 7:50 PM: Didn’t look for brand names. Will try those. Thank you.
David Muslin (Private): 7:56 PM: Current treatment:10.17.20 Abiraterone + Pred on hold since 7/15/2021
Edward Clautice (to Everyone): 7:57 PM: Even on 40. skip right thruogh Amarillo – it smells really bad
Mark Perloe, MD Atlanta (to Everyone): 7:58 PM: Darn, we plan Little Rock the first day. Then Amarillo, then Flagstaff. I hope our dog coooperates.
Alan Moskowitz (to Everyone): 8:05 PM: Need to leave, thanks again for the guidance.
Len Sierra (to Organizer(s) Only): 8:12 PM: I’ve got to drop off, guys. Great job, Herb. See you next week!
Edward Clautice (to Everyone): 8:15 PM: thanks – gotta go
Joe Gallo (to Organizer(s) Only): 8:17 PM: She should watch Epstein video on our site
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.
Nothing makes me, as AnCan’s Founder, happier than when our participants meet each other. Over 30% of our respondents said they made friends outside the groups, earlier this year.
