Hi-Risk/Recurrent/Advanced PCa Virtual Support– Men & Caregivers Recording, Mar 9, 2021
Editor’s PickNo real pick – just lots of doubles this week – from 2 men with ‘strange’ disease to relugolix, Provenge, and American Ginseng all coming up twice! (rd)
Topics Discussed
Dx young w ‘strange’ disease, it comes back and is treatable; relugolix/Orgovyx now and later in the meeting; recurrence shows in bladder neck; intraductal/ductalcell discussion; HT induced anemaia; Covid & walking pneumonia; Provenge now and again later; Jobert syndrome; STAMPEDE re-analysis; men produce PSA in different amounts; American ginseng now and again later; treating hot flashes; Lu177 PSMA trial participant; more chemo; Artificial Urinary Sphincter procedure
Jake Hannam (to Organizer(s) Only): 5:04 PM: Dr. Peter Van Veldhuizen’s treatment focus for the past 25 years has been genitourinary cancers. He has been actively involved in the development and participation of local and national clinical trials to find new treatment alternatives for these tumor types. He also has a special interest in cancer survivorship and quality of life issues.Dr. Van Veldhuizen ensures patients are fully educated on their diagnosis and actively involved in treatment decisions. His goal is to help patients have some control over their cancer diagnosis and treatment in an effort to return to life as normal as possible.Dr. Van Veldhuizen joined the Wilmot Cancer Institute faculty in 2020. He serves as the Director of Genitourinary Medical Oncology.
Len Sierra (to Everyone): 5:11 PM: Can anyone recommend a reliable supplier of American Ginseng?
Ben Nathanson (to Everyone): 5:12 PM: American Ginseng is going to be my question tonight, too
Herb Geller (to Everyone): 5:21 PM: There is a list on the Maryland web site of dealers who are licensed to harvest ginseng in MD. I am not sure about other states
Jefferson Duryee (to Everyone): 5:22 PM: has any one done provenge ?
Rick Davis (to Everyone): 5:24 PM: As said, stick to Wisconsin Ginseng
Mark Thompson Rehoboth Beach DE. (to Everyone): 5:24 PM: Thank you all very much for being here for support for men like myself with advanced prostate cancer. I will definitely be back. Thank you all very much.
Jefferson Duryee (to Everyone): 5:25 PM: I believe it takes up yo five hours to collect sample to be sent for processing. i wonder how long it would be to have it put back ?
Len Sierra (Private): 5:25 PM: Have you ever tried it, Rick?
Rick Davis (to Len Sierra): 5:26 PM: nope! Rob swore by it
Jefferson Duryee (to Everyone): 5:28 PM: I understand but it can not hurt can it
Len Sierra (Private): 5:29 PM: Good enough for me!
Jefferson Duryee (to Everyone): 5:30 PM: how long does it take to put it back in ?
Rick Davis (to Jefferson Duryee): 5:30 PM: Jefferson – this is a longer conversation. We’ll try to bring it up in the Group.
Jake Hannam (to Organizer(s) Only): 5:40 PM: liverish [liv-er-ish] adjective: resembling liver, especially in color. having a liver disorder; bilious. disagreeable; crabbed; melancholy: to have a liverish disposition.
Rick Davis (to Everyone): 5:41 PM: disagreeable …. that’s me!
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 1, 2021
Editor’s Pick: Deciding on the best trial for you can be a challenge! (rd)
Topics Discussed
Denovo Mx Dx controlled w. abi on recurrence; GU med onc arrives late with recurrent disease challenge; ARROW trial for I-131, monoclonal antibody and enz; chemo compromises taste; after PSA of 3000, stable at less than 0.1 2 years later; does vaccine help your immune system; ganglion on shoulder; what’s teh best trial for Carl’s BRCA driven Pca?; artificial sphincter comes into play
Chat Log
Pat Martin (to Everyone): 6:04 PM: I saw a study that introduced stress to mice by…isolating them. I thought that was what this lockdown was meant to prove.
Peter Monaco (to Everyone): 6:07 PM: Still on track to leave for FL. Snow ends tomorrow so roads should be OK by Thursday.
Peter Kafka (to Everyone): 6:10 PM: New members should put their emails in the chat window. That would be helpful.
Michelle Amemiya (to Everyone): 6:13 PM: I am here on behalf of Steve Linett. Just going to listen. Thank you!
Herb Geller (to Everyone): 6:24 PM: Prostate Next seems to be for germline mutations according to their web site
Tracy Saville (to Everyone): 6:28 PM: i’m having same process done next month as part of a clinical trial.
Jake Hannam (to Everyone): 7:03 PM: Emmanuel S. Antonarakis, M.D.. Professor of Oncology and Urology, Johns Hopkins University
Joel Blanchette (to Everyone): 7:04 PM: JH GU Med Oncs: Michael Carducci, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/0006406/michael-carducci) Samuel Denmeade, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/0007191/samuel-denmeade) Emmanuel Antonarakis, MD (https://www.hopkinsmedicine.org/profiles/results/directory/profile/9451649/emmanuel-antonarakis) Mark Markowski, MD PhD https://www.hopkinsmedicine.org/profiles/results/directory/profile/6570385/mark-markowski Channing Paller, MD https://www.hopkinsmedicine.org/profiles/results/directory/profile/3138167/channing-paller Catherine Handy, MD https://www.hopkinsmedicine.org/profiles/results/directory/profile/10003341/catherine-handy
Rick Medley (to Everyone): 7:12 PM: Note I did the Provenge immunotherapytreatment in January 2020. I had extensive genitics analysis with zero genetic history of cancer.
Pat Martin (to Everyone): 7:13 PM: ARRIS study???
Rick Davis (to Everyone): 7:14 PM: ARROW study
Pat Martin (to Everyone): 7:15 PM: thanks
Rick Medley (to Everyone): 7:24 PM: I have really enjoyed gentle (Hatha) yoga
Frank Fabish (to Everyone): 7:27 PM: Thanks all
Rick Medley (to Everyone): 7:33 PM: Provenge immunotherapy is specifically for prostate cancer to build up your body’s own t-cells
Peter Kafka (to Everyone): 7:33 PM: I get my second Moderna shot on Friday.
Rick Medley (to Everyone): 7:35 PM: In talking with a nurse from the maker of provenge she said they have no markers for whether its working or not.
Pat Martin (to Everyone): 7:44 PM: What was the trial that was mentioned?
Herb Geller (to Everyone): 7:47 PM: Regeneron – NCT03972657
Joel Blanchette (to Everyone): 7:54 PM: Dr. Leach, Tower Urology CA
Carl Forman (to Everyone): 7:59 PM: related to Robin Leach?
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 26, 2021
Editor’s Pick: What to do when your doc gives you a pink slip. …. and a very exciting BiTE trial with REGN5678! (rd)
Topics Discussed
Late stage treatment options; how PCa effects your exercise regime; what next after docetaxel stops working; SBRT for spot and gland Tx; PSA as a marker; handling pain from chemo; issues around unblinding a clinical trial; medical marijuana; handling constipation from pain meds; when youd doc kicks you out ….; meaning of MSI grades; hip replacement with bone mets; markers for small cell/NE PCa; exciting BiTE trial with REGN5678; resuming Tx after IHT;pill LHRH relugolix/orgovyx prescribed; Lupron vs Eligard
Chat Log
Ancan – rick (to Everyone): 4:28 PM: Kampel https://www.mskcc.org/cancer-care/doctors/lewis-kampel
Ancan – rick : 4:39 PM: https://ancan.org
Jim Ward (Private): 4:40 PM: HI Rick — Does AnCan sponsor a colorectal cancer support group? I checked the list of groups on AnCan.org, but missed it if there is one. Thx!
Ancan – rick (to Jim Ward): 4:43 PM: we are working on it, and we have been trying to establish for some time. But not yet ….. WE do have the Speaking Freely group and the Caregivers Group that are pan-cancer. I do know a number of resources for colorectal. We can discuss offline.
Jim Ward (Private): 4:48 PM: Sounds good, Rick. Someone I know has colon cancer (largely under control). She might well benefit from the Speaking Freely group until the colon group gets set up. Thank you! Except Speaking Freely is just for men, I think! Well, will look forward to discussing off-line.
Ancan – rick (to Everyone): 4:57 PM: Speaking Freely https://ancan.org/men-speaking-freely/
Ancan – rick (to Everyone): 4:58 PM: Stereotactic Body Radiation Therapy – SBRT
Mark Perloe (to Everyone): 5:02 PM: Tramadol 100 mg ER might be useful.
Bob McHugh (to Everyone): 5:04 PM: Meloxicam is a prescription NSAID.
Mark Perloe (to Everyone): 5:08 PM: So is tramadol. Do not take on an empty stomach for either.
Ancan – rick): 5:23 PM: Alan Bryce http://www.mayoclinic.org/biographies/bryce-alan-h-m-d/bio-20055430
