Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Mar 2, 2021
Editor’s Pick: We rarely discuss anesthesia – but we did tonight. Along with estrogen treatment! (rd)
Topics Discussed
Recurrence with multiple spots; signet cells; artifical urinary sphincter; anesthetic choices; estrogen therapy; elecrostimulation for incontinence; i-131 PSMA radionuclide trial; abscopal effec from spot RT; regulating your own LHRH; relugolix; Flomas and shortness of breath; metformin & statins
Chat Log
Jake Hannam (to Everyone): 6:35 PM: Genomic Loss of Heterozygosity (LOH) or genomic instability is often related to defective homologous recombination repair mechanisms.
Herb Geller (to Everyone): 6:38 PM: I did find that BRCA mutations can lead to LOH.
AnCan – rick (to Organizer(s) Only): 6:41 PM: aggressive Tx
Mark Perloe (to Everyone): 6:44 PM: But loss of heterozygosity is of uncertain significant unless it relates to BRCA2
Herb Geller (to Everyone): 6:45 PM: That’s true – BRCA can lead to LOH, but LOH without BRCA is not informative/
Mark Perloe (to Everyone): 6:45 PM: I did trelstar and abiraterone. It was rough at first, but with exercise it was quite tolerable. Darolutamide does not cross the blood brain barrier, so how one feels is less disrupted. I agree that over agressive treatment may lead to earlier progression to CR status or neuroendocrine disorder. Deferring immune approach without BRCA2 seems to be outside the standard of care. Is Darolutamide covered to the same extent as other receptor blockers?
Herb Geller (to Everyone): 6:49 PM: Darolutamide may have a more favorable profile of actions.
Carlos (to Everyone): 6:56 PM: signet cells
Carl Forman (to Everyone): 6:58 PM: Is anyone on Relugolix (Orgovyx) as a replacement for, or instead of, Luporn/Eligard? It is a pill instead of an injection, and lower risk of cardiovascular events.
Herb Geller (to Everyone): 6:59 PM: It is a histologic variant of adenocarcinoma that responds very similarly to hormone therapy.
John Ivory (to Everyone): 6:59 PM: I’ve been on Relugolix for just a week instead of Lupron.
Peter Kafka (to Everyone): 7:01 PM: I am not sure Relugolix is covered by insurance yet. At least that is what I have heard. Perhaps it is too new.
John Ivory (to Everyone): 7:02 PM: I’m on Medicaid (not Medicare) in Illinois. Was surprised I was covered. Expected not to be. Maybe since it avoids the need for a nurse for the injection?
Mark Perloe (to Everyone): 7:08 PM: Propofol is great. It is just not an at home disease. We loved it for egg retrievals. You won’t remember going to sleep. They tell you it might burn, and the next thing you are ready to get dressed.
Carlos (to Everyone): 7:10 PM: No one complains about Prpopfol or Versed either.
Herb Geller (to Everyone): 7:13 PM: For me, I always taught that you taste almonds and then go to sleep.
Jon McPhee (to Everyone): 7:13 PM: What is the stuff they are discussing?
AnCan – rick (to Everyone): 7:14 PM: estradiol
Carlos (to Everyone): 7:14 PM: Estrogen
Jimmy Greenfield (to Everyone): 7:17 PM: Wassersug said exactly this
Carlos (to Everyone): 7:20 PM: Yes Wasserburg is the source.
ALFRED LATIMER (Private): 7:20 PM: Dr E was very dismissive of my use of estrodiol. Said it was “old school”.
Jimmy Greenfield (to Everyone): 7:22 PM: everyone should know Wassersug is cool, very kind and approachable you can easily get his info he answers email
Carlos (to Everyone): 7:23 PM: Does anyone know a doctor that works with estrogen? I would like to explore that further. Are you using a patch?
AnCan – rick (to Everyone): 7:35 PM: Salivary Glands https://www.prostatecancer.news/2021/01/avoiding-radiation-damage-to-salivary.html
Carlos (to Everyone): 7:40 PM: UCLA and SFO are using gallium-68. Gallium-68 is for the PSMA PET scan. Oligometastatic is 5 or less metastatic lesions.
Herb Geller (to Everyone): 7:46 PM: The definition of oligometastatic is not so precise. Others use 3 and some would go further than 5.
Carlos (to Everyone): 7:50 PM: You are correct. Five is the cut off for getting focal radiology treatment.
Mark Perloe (to Everyone): 7:52 PM: Or you treat primary and the oligo mets respond. Dr. Kishan did not believe it exists in prostate
Mark Finn (to Everyone): 8:12 PM: folks – got to go. Thanks for an informative session.
Frank Fabish (to Everyone): 8:13 PM: I am checking off. See you next week. I have my 4th Chemo next Thursday.
Jon McPhee (to Everyone): 8:18 PM: On Flomax I noticed incidences of low blood pressure when exercising or hiking in hills. Have gone to Flowmax every second day and that helps
Mark Perloe (to Everyone): 8:18 PM: Take CO Q10 on statin
Herb Geller (to Everyone): 8:18 PM: I think I’ll try that – I am peeing fine, so I might ot need it at all.
Skip Maniscalco (to Everyone): 8:18 PM: What is too much Metformin?
Mark Perloe (to Everyone): 8:19 PM: I take 1000 mg bid\
Skip Maniscalco (to Everyone): 8:19 PM: Any difficulty? That is what I take
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording 2/23/21
Editor’s Pick: For our Vets this week, a vigorous discussion around using the VA, why to dual enroll, and Agent Orange.(rd)
Topics Discussed
Recurrence after Focal Laser Ablation; ARV-110 trial; high urea & creatinine; sacrocranial massage; estradiol patches; ProTER Lu177 PSMA trial; relugolix; enroll at the VA as well as your civilian provider; Agent Orange; electrostimulation for incontinence; restarting ADT when it was tough first time; exercise, ADT and Donna Wilson!; lasting as long as you can before starting ADT; artifical urinary sphincter procedure;; BiTE trials; Dr. Charles Drake – where are you?
Chat Log
Bill Franklin (to Organizer(s) Only): 4:00 PM: Really!? 15 slides? It didn’t seem like that many. 🙂 $75.00 already donated via PayPal.
AnCan – rick (to Everyone): 4:22 PM: Dennis McGuire is now with us!!!
Jake Hannam (to Everyone): 4:31 PM: Axumin PET/Ct Herb Geller (to Everyone): 4:36 PM: This trial NCT03939689 has MD Anderson as a site and used PSMA PET imaging
Julian Morales (to Everyone): 4:41 PM: Thank you Jake and Herb!
Pat Martin (to Everyone): 4:47 PM: What is Carl’s PSADT? That could tell him when he’ll fit the 4.0 threshold correctly.
Paul Freda (Private): 4:56 PM: For a long long time we’d have 20 – 25 show up. But recently I am seeing numbers >30 and tonight we hit 40. First time I have seen that.
Bob McHugh (to Everyone): 5:06 PM: PSMA avid?
Pat Martin (to Everyone): 5:17 PM: They have enlarged it to MOST bases as they used Agent Orange throughout to control vegetation. VFW posts usually have someone on site to help with the paper work
Jake Hannam (to Everyone): 5:21 PM: ty Pat
AnCan – rick (to Everyone): 5:25 PM: http://www.uroplasty.com/
AnCan – rick (to Everyone): 5:26 PM: DAV Disabled American Veterans is also a great source …. <http://www.dav.org/>
Jim Marshall – Alexandria, VA (to Everyone): 5:28 PM: IT is said 18M+ gallons were dumped all over Vietnam over 11 years. Have an analysis of where, when, what and ho wmuch was dumped if anyone is intersted. send me an e-mail at Marshall-james@Comcast.Net Got it from Agent Orange Lawsuit. AF-Ret, 200% VA Disabled.
Mark Perloe (to Everyone): 5:29 PM: Can they use abiraterone and prednisone alone? They should block testosterone from the testicles as well.
Mark Perloe (to Everyone): 5:31 PM: Peloton each morning helped with brain fog and weakness.
Herb Geller (to Everyone): 5:31 PM: But there should be no difference in side effects
Frank Fabish (to Everyone): 5:33 PM: I need to drop off. Thank you. See you next Monday.
Mark Perloe (to Everyone): 5:41 PM: Absolutely Jimmy. Aerobics is not enough. It helps endurance, but cardioprotection comes from building and protecting muscles.
Mark Perloe (to Everyone): 5:41 PM: You can use bands, or dumbells.
Pat Martin (to Everyone): 5:43 PM: Lifting also strengthens your bones
Jimmy Greenfield (to Everyone): 5:43 PM: Definitely!
John Ivory (to Everyone): 5:47 PM: Yes. My mind never wants to believe that exercise will help, and it protests, but both resistance and cardio both give me energy. I usually don’t need a nap on days that I exercise.
Alan Moskowitz (to Everyone): 5:50 PM: To those who do muscle strengthening while on hormone therapy, how hard and how long and how frequently do you do weight training / band training exercise? I hesitate even how, pre-ADT, to push myself too hard because of muscle strain, arthritis, etc.
Jim Marshall – Alexandria, VA (to Everyone): 5:51 PM: Exercise has been my slavation, biking almost every day just tooling around the local area for 30-45 minutes, Plus hydration around 60 fluid oz per day. Eat frozen grapes to mitiage hot flashes. Also works with chunks of frozen banannas.
John Ivory (to Everyone): 5:52 PM: Thanks for the info, Rick. I listened to the talk today and have some taps open to check out her exercises.
Pat Martin (to Everyone): 5:53 PM: I’ve been in ADT twice so for and usually use a weight that I can rep 15 times and then do 3 sets. My MO got on me when I would slack off and explain to him I didn’t have any T. You won’t be building muscle, mainly maintaining.
John Ivory (to Everyone): 5:53 PM: https://ancan.org/keep-movin-donna-wilson-rn-msn-rrt-webinar/ @Pat Martin, I hadn’t done resistance training before and started with this easy routine from PCRI https://pcri.org/sky-2/2017/9/19/fitness-and-longevity-rylt4
Jerry Pelfrey (to Everyone): 5:55 PM: I exercise every day in the morning. Treadmill for one hour which is about 3 miles. As I am walking I use 3 lb weights and do upper body work. Pat Martin (to Everyone): 5:55 PM: I watched a presentation from them today.
Len Sierra (to Everyone): 5:55 PM: Thanks for the link, John Ivory!
Pat Martin (to Everyone): 5:55 PM: Good group.
John Ivory (to Everyone): 5:55 PM: NP, want to check it out myself! 🙂
Jimmy Greenfield (to Everyone): 5:57 PM: Building muscle is tough at our age even without supressed T. You can get it done with light weights, bands, calisthenics etc but you have to do a lot of repetitions.
Mark Perloe (to Everyone): 5:57 PM: how long do you continue prednisone after stopping abi.
AnCan – rick (to Everyone): 5:59 PM: stop slowly Doc ……. you know that
Jimmy Greenfield (to Everyone): 5:59 PM: but it’s good for everybody!
Alan Moskowitz (to Everyone): 6:04 PM: thanks for the comments on exercise.
Mark Perloe (to Everyone): 6:06 PM: Thanks. They always say that CYP17 inhibitor is irreversible.
Mark Perloe (to Everyone): 6:06 PM: Anyone have an idea on Jeffrey Turner? My oncologist left the practice and I can’t get an answer from them.
Pat Martin (to Everyone): 6:07 PM: I stopped taking Abi and Prednisone at the same time. Didn’t notice any SEs.
David Muslin (to Everyone): 6:07 PM: Got to go guys. See you next week.
Jimmy Greenfield (to Everyone): 6:07 PM: Alan get a trainer if you’re unsure, but in general you’re going to hurt yourself far more backing off than to do it. I use a pulse rate monitor also
John Ivory (to Everyone): 6:08 PM: Jimmy, how much should a trainer cost and how often do you use yours?
Herb Geller (to Everyone): 6:08 PM: Charles Drake is VP of Immuno-oncology at Janssen.
Mark Perloe (to Everyone): 6:08 PM: Thanks. I’d be most grateful.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021
Editor’s Pick:We love GOOD NEWS – so when a ‘young’ man diagnosed denovo metastatic receives a visit from NED (No Evidence of Disease) 9 months after starting treatment , we are thrilled! (rd)
Topics Discussed
why are you waiting on Provenge; more on what to do at 1st recurrence; RP complications impact follow-up treatment; Dr. Efstathiou …. & Dr.Turner; rejected for REGN5678 – you heard it here first!!; young denovo Mx man is NED – yeah!!; Axumin scan; nodules suggest salvage RT; rare GU med onc switch at MSKCC; more lesions suggest chemo rather than spot RT; what to expect from ADT; Eligard, Lupron … or maybe just Coivid19?; how about adding a PARP-I to abi if you’re BRCA+?
Len Sierra (to Everyone): 7:14 PM: Abiraterone acetate with prednisone, 5mg, twice daily or dexamethasone, 0.5mg, once daily met the prespecified threshold for the primary end point. abiraterone acetate with prednisone, 5mg;once daily or 2.5mg twice daily did not meet the threshold Here are the numbers for months of radiographic progression-free survival for each group: Dexamethasone: 26.6 months; Prednisone 5mg twice daily: 18.5 months; Prednisone 5mg once daily: 15.3 months; Prednisone 2.5mg twice: 12.8 mo. Full article on safety and efficacy of glucocorticoid regimens used with Zytiga/abiraterone https://jamanetwork.com/journals/jamaoncology/fullarticle/2737089
Jake Hannam (to Everyone): 7:25 PM: ty len
AnCan – rick (to Everyone): 7:33 PM: Peter Van Veldhuizen – Wilmott Rochester
AnCan – rick (to Everyone): 7:36 PM: https://ancan.org/safety-of-glucocorticoid-regimens-in-combination-with-zytiga-for-mcrpc-patients/ This is Len’s AnCan post
Peter Kafka (to Everyone): 8:09 PM: Jump rope is great
Tracy Saville (to Everyone): 8:09 PM: have a good night everyone. i have to run.
Peter Kafka (to Everyone): 8:11 PM: I agree. Elligard sucks
Frank Fabish (to Everyone): 8:21 PM: See you next week guys.
On February 3rd, we had the most pleasure of hosting Lindsey Byrne, MS, CGC (Licensed Genetic Counselor at The Ohio State University Wexner Medical Center) at our Active Surveillance Virtual Support Group. She is one of the few genetic counselors in the United States specializing in prostate cancer. Genetic counseling and testing are not only important for men with prostate cancer but to their children, siblings and potentially other family members. The information presented can benefit anyone in the Prostate Cancer arena, not just AS!
We here at AnCan want to sincerely thank Lindsey for providing this amazing resource to our community.
Watch here:
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Feb 9, 2021
Editor’s Pick:Dr. BJ Miller’s Prognosis Directive may change how you handle your diagnosis and treatment path! (rd)
Topics Discussed
denovo metastatic treatment; comparing liquid vs solid tissue Bx for sequencing; BJ Miller’s Prognosis Declaration; high risk Dx dilemma; how quickly does T return; exercsie training during chemo; ischemic brain image; Lu177 PSMA R2 PROter Trial; symptom management discussion; relugolix; cumulative ADT impact; ADT effective
Chat Log
Jake Hannam (to Everyone): 4:07 PM: nothing for me – FMI liquid biopsy tomorrow
Bob McHugh (to Everyone): 4:09 PM: I have Dr. Oh as well.
Pat Martin (to Everyone): 4:10 PM: Axumin scan scheduled for 03/04. 03/05 Lupron to restart. Still waiting to see if imunotherapy will work for me.
Bob McHugh (to Everyone): 4:18 PM: Been seeing Oh since ’15
Bill Franklin (to Organizer(s) Only): 4:20 PM: I have seen more than 30 on the screen with cameras on.
Jake Hannam (to Organizer(s) Only): 4:20 PM: limit was 25 last week too
Ken A (Private): 4:22 PM: rick i hope you will bring up the bj miller form
AnCan – rick (to Ken A): 4:22 PM: trying to when i get in
John Ivory (to Everyone): 4:25 PM: Thanks for the news re: the liquid biospy, Rick. Here’s the announcement https://bit.ly/3pcyDTa and for the nerds, the ASCO poster https://bit.ly/2Z2W4Dy
John Ivory (to Everyone): 4:44 PM: Elizabeth Kessler https://som.ucdenver.edu/Profiles/Faculty/Profile/21572
Jake Hannam (to Everyone): 4:48 PM: Axumin PET/CT
Pat Martin (to Everyone): 4:50 PM: Another question…How many cores positive?
AnCan – rick (to Everyone): 4:50 PM: Tx Gents
John Ivory (to Everyone): 4:54 PM: I guess I’m Mr. Chat today. Following up on Rick’s mention of whether men want to know their prognosis, he wrote a wonderful article about it here (acknowledging Len as well): https://ancan.org/required-reading-if-you-think-your-condition-is-life-threatening/
AnCan – rick (to Everyone): 4:59 PM: SBRT compared to other RT modes ….. Allen Edel (@tallallen) https://www.prostatecancer.news/2021/01/sbrt-for-high-risk-patients.html
Bob McHugh (to Everyone): 5:04 PM: No one mentioned proton therapy. Is that an option?
AnCan – rick (to Everyone): 5:06 PM: Not really, Bob …… because it will involve the same number of treatments as IMRT.
Bob McHugh (to Everyone): 5:07 PM: It used to be sold as more accurate and therefore less risk of side effects?
AnCan – rick (to Everyone): 5:08 PM: Some better side effects, some worse side effects
Bob McHugh (to Everyone): 5:09 PM: Understood
Jimmy Greenfield (to Everyone): 5:17 PM: Relugolix
Bob McHugh (to Everyone): 5:20 PM: https://www.acsm.org/get-stay-certified/get-certified/specialization/cet
John Ivory (to Everyone): 5:26 PM: Thanks, Bob & Rick. Here’s how to find a certified trainer in your area certifed cancer trainer in your area. https://certification2.acsm.org/profinder
Tracy Saville (to Everyone): 5:26 PM: have to jump a bit early. thanks, guys.
Pat Martin (to Everyone): 5:26 PM: I tried to get in Flu-BLAST study. Too fast of PSADT. But my med/onc is going to use same protocol as SOC.
John Ivory (to Everyone): 5:44 PM: I’m going to be joining an 8-week discussion group for cancer patients called Meaning-Centered Psychotherapy through Northwestern Hospital. I’m not sure when it will start bc they’re still recruiting for it. They said it was free (not sure if it’s because I’m a patient there). Here’s the link: https://bit.ly/3oidjLs
Joe (to Everyone): 5:47 PM: I see a PsychOncologist at UCH and we did the Meaning Centered work based on the ideas of Viktor Frankl. It was and is amazingly helpful for me.
John Ivory (to Everyone): 5:48 PM: Yes, Joe–same source. Thanks.
Joe (to Everyone): 5:49 PM: I think it was started by a fella at Sloan Kettering named Bill Breitbart….called him up and thanked him. My psych was one of his students.
Joe (to Everyone): 5:52 PM: gotta run….great to see veryone and helpful as always
John Ivory (to Everyone): 5:53 PM: Thanks, Joe. Here’s a good overview of Breitbart’s work
Joe Murgia (to Everyone): 5:53 PM: I priced ORGOVYX (relugolix) today on my Medicare Advantage site. It was around $1750.00 for 90 days at my local pharmacy. I was surprised it was that low.
Len Sierra (to Everyone): 5:54 PM: I agree, Joe — that is surprisingly low!
Herb Geller (to Everyone): 5:55 PM: Still not cheap
John Ivory (to Everyone): 5:55 PM: Joe M. I’m guessing that ORGOVYX has a financial benefit of not needing to be administered by a HCP (though that makes it a drug, not a procedure)
John Ivory (to Everyone): 5:57 PM: Funny anecdote–the week when my preapproval was in process for ORGOVYX, I didn’t remember the name of the drug bc I was sure I wouldn’t be approved. That week I did a market research study, and it turned out to be for ORGOVYX! So far I’m up a couple hundred bucks on it.
Joe Murgia (to Everyone): 5:58 PM: I will double check again tomorrow to make sure I did not misread the website pricing. If my Casodex monotherapy stops working, I’ll be considering Orgovyx.
Len Sierra (to Everyone): 6:01 PM: Joe, if you’re doing monotherapy, you’re better off with one of the newer AR blockers, like Xtandi, Erleada or Nubeqa. They have lower incidences of gynecomastia than Casodex.
John Ivory (to Everyone): 6:02 PM: Thank you Peter M. & Jake! I watch those videos sometimes.
Wang Gao Shan (to Everyone): 6:03 PM: Yes… Thank You Peter & Jake
Peter Monaco (to Everyone): 6:04 PM: Glad to help!
Jake Hannam (to Everyone): 6:09 PM: fyi – Peter M. does all the recordings now. I’m just his backup now.
