Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 13, 2021
Editor’s Choice : We learn about a partial removal of the prostate for urinary reason – a simple prostatectomy; and how this can complicate identifying whether PCa has spread. (rd)
Topics Discussed
Hawaii KP patient needs better follow-up on recurrence; a partial removal of the prostate confuses what’s going on; 80 yr man wonders how to handle recurrence; Lu177 PSMA trial experience; & … I130 PSMA trial experience together with jaw issues; cyclophosphamide oral chemo; the AUS works!! (artificial urinary sphincter); PSA still rising on ARV110 trial; experience with return of testosterone; follow-up after 4+5 RP with a positive node.
Chat Log
Rick Davis (to Everyone): 3:03 PM: OMG …… Don Price – the Mouse returns!! Bob Bordiga also coming out the woodwork
Don Price (to Everyone): 3:06 PM: Si…sorry to have been away so long.
John Ivory (to Everyone): 3:45 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/anish-b-parikh Pat Martin (to Everyone): 3:46 PM: Any biopsies?
Jake Hannam (to Everyone): 3:51 PM: thanks john
Pat Martin (to Everyone): 3:53 PM: What Gleason score?
John Ivory (to Everyone): 3:53 PM: he said 4+4
Pat Martin (to Everyone): 3:54 PM: Thanks. I missed that
W Klass Toronto (to Everyone): 3:56 PM: Need to leave. Thanks for the invite.
Pat Martin (to Everyone): 3:57 PM: I was looking forward to hearing from you.
Jake Hannam (to Everyone): 3:57 PM: thanks for joining us. Come back soon!
Herb Geller (to Organizer(s) Only): 4:03 PM: I just got an e-mail from Collins at Gt saying my PSA yesterday was 1.4, and that was after I did stationary bicycle. The previous GT number was 1.8!
Pat Martin (to Everyone): 4:08 PM: heading out. See all next week.
John Ivory (to Everyone): 4:16 PM: I’ve go to run to another meeting. Good to see everyone!
Russ (to Everyone): 4:25 PM: Heading out as well. Have a good night!
Bob (to Everyone): 4:30 PM: Is an axumin scan the same as a PSMA PET with Galium 68?
Jake Hannam (to Everyone): 4:30 PM: oral chemotherapy drug called cyclophosphamide (Cytoxan)
Herb Geller (to Organizer(s) Only): 4:30 PM: No, it uses a different tracer from PSMA. Axumin uses a different tracer
Len Sierra (to Everyone): 4:31 PM: Bob, no, PSMA-PET is more sensitive than Axumin
Rick Davis (to Everyone): 4:36 PM: cyclophosphamide https://pubmed.ncbi.nlm.nih.gov/31399784/
Bob (to Everyone): 4:40 PM: Does anyone have experience with BiPolar ADT? If so, did it work?
Rick Davis (to Everyone): 4:41 PM: Bob – we have a webinar on BAT … search for Denmeade on our website https://ancan.org
Rick Davis (to Everyone): 4:42 PM: Anecdotally we only see short term results from BAT, but JH is reporting better results. Some of our guys have had more conversations with JH. This is a longer discussion than the chat window.
Bob (to Everyone): 4:43 PM: Thank you everyone. I have to leave due to a 1:45appointment which was previously scheduled.
Jake Hannam (to Everyone): 4:44 PM: ARV-110
Jeff Marchi (Private): 4:48 PM: you asked whether Santa Clara is where the medoc is located. when I had my prostate removed I had to drive from San Francisco to San Jose. that is where the surgeons are located. must be where medoc is located
Rick Davis (to Jeff Marchi): 4:50 PM: No he’s mid-Peninsula
Herb Geller (to Everyone): 5:16 PM: I gotta go. See you on Monday
Len Sierra (to Everyone): 5:23 PM: Goodnight, fellas. See you next week.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 5, 2021
Editor’s PickShould docs make overall survival predictions – it scares a newly diagnosed man, while an old hand laughs! (rd)
Topics Discussed
High-risk PCa treatment decision; recurrence – beware of overall survival preductions; durable remission and NED; experiencing spinal collapse; Spot Radiation; scanning for recurrence; ARV110 trial experience; can you add a drug to your trial; lymphedema issues; CBC questions; picking up rib lesions; 5 yrs out when the doc didn’t give you 5; record your medical meetings; estrogen patch for hot flashes; more chemo …. & more & more; gabapentin for neuropathy; PBRT vs IMRT; going off ADT to get a scan result; …. & lots of nutrition discussed in the Chat Log!
Chat Log
Jeremy (to Everyone): 5:21 PM: https://www.fda.gov/news-events/press-announcements/fda-approves-first-psma-targeted-pet-imaging-drug-men-prostate-cancer
Ken (to Everyone): 5:24 PM: hey jake…. chemo #15 this past friday so dealing with the side effects. alk phos continued down 10 points and psa down 2
Ted Healy (to Everyone): 5:46 PM: record your meetings
Jake Hannam (to Everyone): 5:47 PM: Yes we do, Ted (this and several others)
Ted Healy (to Everyone): 5:48 PM: no, meetings with the dr
John I (to Everyone): 5:52 PM: Wow, Sylvester, that was inspirational!!!
Len Sierra (to Everyone): 5:53 PM: I agree with John – we need to hear more from Sylvester on these calls!
Jake Hannam (to Everyone): 6:26 PM: Radium 223 negates future use of lutetium?
Jake Hannam (to Everyone): 6:27 PM: Is that true?
Herb Geller (to Everyone): 6:36 PM: I don’t know Ra-223 negates anything but it doesn’t seem that promising compared to other therapies.
Rick Davis (to Everyone): 6:38 PM: radionuclide trials usually prevent particpation if you have already taken a radionuclide. check the Lu177 trials
Carl Forman (to Everyone): 6:52 PM: Thanks so much to Scott Hogan for being able to participate here tonight. Hope to see you here again. Best wishes.
Ted Healy (to Everyone): 7:06 PM: I’m sorry, have to go. thank you all!
Vanita Gaglani (to Everyone): 7:10 PM: walnuts, greens,soaked fenugreek seeds ( 1 tsp per day) real licorice roots, sunflower seeds, spearmint tea all help with hot flashes. Len Fenugreek seeds can be bought in any Indian grocery store.If you have an Indian grocery store near you they have the greens called Methi. Some of the anti carcinogenic ,anti inflammatory natural products include Turmeric, cummin seeds, cinnamon.
eric (to Everyone): 7:16 PM: is this for anti inflammatory
Carlos Huerta (to Everyone): 7:19 PM: Alpha Lipoic Acid
Vanita Gaglani (to Everyone): 7:19 PM: yes. But get real turmeric powder , not capsules.1/4 tsp each you can put all in mik and drink or in tea, warm water. I am happy to answer any questions. hello@vanitasrehab.com. These are natural anti inflammatories.
Rick Davis (to Everyone): 7:22 PM: IMRT vs PBRT side effects http://prostatecancerinfolink.net/2012/02/01/first-directly-comparative-data-question-safety-of-pbrt-vs-imrt/
Carlos Huerta (to Everyone): 7:23 PM: Get a PSMA PET to target the protons
Vanita Gaglani (to Everyone): 7:24 PM: For all treatments try to keep the bladder filled 8-10 oz of urine.
Rick Davis (to Everyone): 7:24 PM: Not necessarily true Vanita – as we heard earlier
Vanita Gaglani (to Everyone): 7:24 PM: we do not need 32 oz of fluid because most men cannot hold it.or women.
John I (to Everyone): 7:26 PM: I needed a full bladder, but I believe it was 24 ounces (though I’m small)
Vanita Gaglani (to Everyone): 7:28 PM: 24 oz is difficult to hold
John I (to Everyone): 7:29 PM: They timed it–drank it 20 min before treatment & tretament was quick.It was hard to hold only if the machine went down & I had to wait a few extra minutes
Vanita Gaglani (to Everyone): 7:30 PM: if anyone can tolerate plain yoghurt eating that helps a lot too Agreed John.
Bruce Bocian (to Everyone): 7:39 PM: please type those letters of that stanford test in the chat box, not sure I heard it correct
Rick Davis (to Everyone): 7:40 PM: 17F DCFPyl
Peter Kafka (to Everyone): 7:40 PM: 17F DCF-PYL PSMA PET CT
John I (to Everyone): 7:42 PM: Great session, thanks Rick
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Mar 23, 2021
Editor’s Pick: Cicadas … no just kiddin’! Nothing outstanding this week unless your intrigued by botox use for bladder urgency. (rd)
Topics Discussed
Bladder issues long after PCa Tx; rectal metastasis; Orgovyx in action; what next – Provenge, enz, daro?; Cicadas … don’t ask!; supplements – bromohexene and phenylisithiocyanate … don’t ask again!!; livr issues from hormone therapy;low dose abi w. food; we question 4 mo HT for 4+4 recurrence; blood count discussion; exercise, exercise, exercise.
Chat Log
….. Apologies but the Chat file did not save on my laptop this week – perhaps because I joined via the Web rather than my desktop. Will know for future!
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!
On March 3rd, we had the esteemed Dr. Darryl Leong (Cardiologist and Director of the McMaster University and Hamilton Health Sciences Cardio-Oncology Program) at our Active Surveillance Virtual Support Group.
Dr. Leong, explained to men on active surveillance that his work on men on AS makes sense because many of these men are at greater risk of dying from cardiovascular diseases—such as heart attacks and strokes—than they are to die from prostate cancer. He said there is strong evidence for the benefits of exercise to reduce CVD risk. He said the research on a diet is not as strong because there are few randomized studies. However, there is recent research from MD Anderson that the Mediterranean diet may have some benefits for men on AS. Long warned that many cardiologists are now questioning the long-accepted practice of taking one baby aspirin a day. He also answered questions about cardiovascular disease issues in men with advanced prostate cancer who are taking hormonal therapy.
We want to thank Dr. Leong for answering so many questions!
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.
