Hi-Risk/Recurrent/Advanced PCa Video Chat, July 9, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Note: Adderall conquers his ADT fatigue — what’s the downside? (bn)
Topics Discussed
Adderall is rescuing him from ADT fatigue — but easy does it; a friend insists his darolutamide led to sepsis; shortening IMRT with SBRT — and which goes first?; topping off the bladder for radiation — a clamp (Lundberg or Wiesner) can prevent accidents; spacer gel for rectal protection in radiation — doctor skill seems to matter; his doc is talking about BAT, but chemo seems a better first option; acute fevers have come and gone since April 2021 — finally, antibiotics and a possible explanation; starts ADT and finds he can finally sleep through the night; solifenacin (new to us) to reduce nighttime bathroom trips; his PSA isn’t responding to ADT — a consult with Dr. E might be wise; we prefer other genomic tests to Guardant; if you’re on a lutamide, watch out for supplements that interact with CYP3A4; he’ll keep the holiday in his drug holiday and put off PSA testing till he’s back; be aware of costs in a clinical trial.l
Chat Log
(Once again, GoTo did not capture the entire log — our apologies)
AnCan – rick · 6:45 PM
We’ve been talking BAT here for many years. Here’s a webinar with Sam Denmeade from 2017 https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
Hi-Risk/Recurrent/Advanced PCa Video Chat, May 14, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Metastatic prostate cancer in addition to metastatic melanoma — at age 50 (bn)
Topics Discussed
He’s 76, hasn’t had a PSMA scan, so maybe not so fast with that surgery — plus he’s in bondage to a restrictive insurance plan; guide the surgery/radiation choice with the online MSK nomogram; treatment for his metastatic melanoma revealed metastatic prostate cancer — at age 50; low hemoglobin keeps him from a clinical trial; why’d doc prescribe Lynparza — you should always ask a doc why; bad to worse when he switches to darolutamide; Orgovyx more tolerable than Lupron?; don’t sweat a 0.01 PSA rise; PSA near zero but PSMA scan can still have value — if insurance will pay; doc balks at drug to reduce testosterone flare; women’s libido-boosting drug Vyleesi may also work for men on ADT — Dr. E putting a study together.
I ran Daniel’s nomogram with what info I have. Daniel you should do it.
Julian – Houston · 6:56 PM
https://www.mskcc.org/nomograms/prostate
Mark Thompson · 7:00 PM
Thank you all for having this support group. Unfortunately, I am dealing with sacrum pain and just fatigue this evening. Thank you. Mark Thompson Rehoboth Beach DE.
AnCan – rick · 7:15 PM
Great point, Capt!!!
Michael McCabe · 7:18 PM
so far i prefer firmagon
Matt M · 7:19 PM
Thanks guys, really appreciate the support and advice!
daniel straub · 7:32 PM
John A: This is Dan and your previous chat indicated that I “should do it”… my nomogram indicates 50-80% high grade prostrate cancer. Are you indicating I should do the surgery removal?
AnCan – rick · 7:33 PM
Daniel – please use this link for PROMISE. It is likely to be much quicker than via KP. https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Hi-Risk/Recurrent/Advanced PCa Video Chat, April 9, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
View AnCan’s patient-centered selection of papers and presentations from ASCO GU 2024, one of the top conferences on prostate cancer treatment: https://youtu.be/YweU8hjA0Lw
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: A night of abi abundance — plenty of advice and observations on abiraterone. (bn)
Topics Discussed
Going from Lupron to Orgovyx, he sees fewer hot flashes; what causes our hot flashes, anyway?; uptick in lactate dehydrogenase — should I worry?; starting abiraterone — what to look out for?; when everything else has failed, a Hail Mary on abiraterone vs a clinical trial; ask Dr. Sartor why Pluvicto didn’t work despite loads of PSMA; we suspect the darolutamide trial he’s being offered is flawed; Jim Marshall emerges from complex heart surgery; overseas trip for lutetium and actinium treatment ends in disappointment stateside — might be time to look for neuroendocrine; stay vigilant with scans even if PSA is low.
Chat Log
John A · 6:40 PM
https://ancan.org/?s=dental
AnCan – rick · 6:41 PM
Prognostic Value of Lactate Dehydrogenase in Metastatic Prostate Cancer: A Systematic Review and Meta-analysis https://pubmed.ncbi.nlm.nih.gov/31558410/
John A · 6:43 PM
High LDH was associated with both worse OS (pooled hazard ratio [HR], 2.07; 95% confidence interval [CI], 1.75-2.44) and PFS (pooled HR, 1.08; 95% CI, 1.01-1.16). In subgroup analyses of both patients with castration-resistant prostate cancer (CRPC) and those with hormone-sensitive prostate cancer (HSPC), LDH was associated with OS (pooled HR, 2.02; 95% CI, 1.69-2.42 and pooled HR, 2.25; 95% CI, 1.78-2.84, respectively). In patients with CRPC, LDH was associated with OS in those treated with docetaxel systemic chemotherapy and androgen receptor-axis-targeting agents (pooled HR, 2.03; 95% CI, 1.37-3.00 and pooled HR, 1.79; 95% CI, 1.25-2.57, respectively). Elevated serum levels of LDH were associated with an increased risk of mortality and progression in patients with metastatic PC. LDH was independently associated with OS in both patients with CRPC and HSPC. LDH could be integrated into prognostic tools that help guide treatment strategy, thereby facilitating the shared decision-making process.
A randomized, double-blind, placebo-controlled Phase 3 study of
darolutamide plus androgen deprivation therapy (ADT)
compared with placebo plus ADT in patients with high-risk
biochemical recurrence (BCR) of prostate cancer
BAY 1841788 / 21492
eric · 7:42 PM
just sent you the file rick
AnCan – rick · 7:43 PM
Eric – ‘m pretty sure this is the trial about which we objected to Bayer. The Standard of Care (placebo) arm is insufficient. Please point that out to Dr. Handy.
AnCan – rick · 7:46 PM
You need either LHRH + a 2nd line anti-androgen (like daro or abi). Don’t take the risk of only the LHRH.
AnCan – rick · 7:47 PM
CORRECTION…. You need LHRH + a 2nd line anti-androgen (like daro or abi). Don’t take the risk of only the LHRH.
Jim Marshall, Alexandria, VA · 7:57 PM
I would think about Chloesterol testing every 6 months and even though it says 200 or below is good, down in the 160s or lower is better with acceptabh HDL & LDL. Had no clue until I did 24 stairs. Jim
Chas Ryan · 8:03 PM
I’m on a statin and I have read that treatment with these ADT drugs can spike your cholesterol or reduce the efficacy of the statins. I will keep an eye on it. Thx
Jim Marshall, Alexandria, VA · 8:05 PM
Do you take it a bedtime? Liptor & Crestor was no good so I was put on Pravastatin and it kicked butt but too late.
Chas Ryan · 8:07 PM
I take atorvastatin at no particular time whenever during the day I remember to take it.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 26, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
View AnCan’s patient-centered selection of papers and presentations from ASCO GU 2024, one of the top conferences on prostate cancer treatment: • ASCO GU 2024 conference highlights https://www.youtube.com/watch?v=YweU8hjA0Lw&t=2s
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: The new hot flash drug for women works for one of our guys, too. (bn)
Chat Log
Unknown · 6:23 PM PROMISE link – just clck on this https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
Steve Roux, MI · 6:31 PM Promise sent me a free DNA “Color” test kit and I sent the kit back. They say it will be 30 days to get results.
Jim Marshall, Alexandria, VA · 6:45 PM Did Abiraterone for 5 years with Prednisone & lupron and did aerobic exerices most days and tolerated it prety well as long as i exercised.
Unknown · 6:49 PM thanks for all your input and information, guys
Bob McHugh · 6:53 PM I had Axumin at .5 PSA . Found a quarter sized lesion in the prostate bed.
AnCan – rick · 6:57 PM To Join Solo Arts Heal with Beth Horner tomorrow at 7.30 pm Pacific Join from the link below https://themarsh.org/soloartsheal
Len Sierra · 7:02 PM Got to leave, Gents. See you next week.
Bob McHugh · 7:17 PM Where was the cardiac cath done, if I may ask?
Bob McHugh · 7:18 PM Three stents here.
Richard Tolbert · 7:18 PM Jim Ma
Bob McHugh · 7:22 PM Is an EKG advisable?
Kirt Schaper · 7:31 PM I have to go.
Unknown · 7:32 PM An echocardiogram can test your hearts function and structure.. it can find many issues
Jim Marshall, Alexandria, VA · 7:34 PM Had the echocardiogram and it did not show anything. I went to the Nuc;lear Stress test which showed 2 Stents surely needed. Jim
Jim Marshall, Alexandria, VA · 7:36 PM Liptor did no good for me along with Crestar. But later and been on Pravastatin knocked it down to 142 with HDL up and LDL down below recommended. jim
Wang Gao Shan – PANAMA · 7:36 PM Thanks Everyone… I have to go.
Unknown · 7:40 PM Thanks Jim
Dr. Jeff · 7:42 PM Arterioscler Thromb Vasc Biol. 2020;40:e55–e64. DOI: 10.1161/ATVBAHA.119.313046
Unknown · 7:44 PM Statins make me weak, my cholesterol has always been low but my PCP recommended a statin, took me months to figure out how weak they made me. My oncologist figured out that the statin was the cause.
Steve Roux, MI · 7:54 PM yes. need to ask about firmagon. My insurance denied the orgovyx.
Dr. Jeff · 8:01 PM Russ Hoover: I had frequent hot flashes on Firmagon and Abiraterone. I eat tofu and ground flax seeds daily and the hot flashes are markedly reduced.
David M · 8:05 PM I have to roll guys.
David M · 8:06 PM Great meeting as always
marc valens · 8:07 PM I’m still getting Lupron shot in the butt every 3 months.
Unknown · 8:07 PM Thanks guys
Jim Marshall, Alexandria, VA · 8:14 PM May the Lupron Supply chain is stocked until it runs out. ABBvie stopped production last year. Jim
Larry Fish · 8:15 PM whats the name of the new drug for hot flashes?
Jim Marshall, Alexandria, VA · 8:15 PM Maybe UPS directly to Dr E.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 12, 2024
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Myovant, Telix & Blue Earth Diagnostics.
View AnCan’s patient-centered selection of papers and presentations from ASCO GU 2024, one of the top conferences on prostate cancer treatment: • ASCO GU 2024 conference highlights https://www.youtube.com/watch?v=YweU8hjA0Lw&t=2s
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Joint pain and muscle pulls on Pluvicto — how long till they fade? (bn)
Topics Discussed
JimmyG losing sleep over his sleep — others weigh in; small PSA changes and oversized worries; Dr. Elisabeth Heath holds her own with a jokester — but seriously, it’s time to go back on treatment; abiraterone caveats; sore joints and muscle pulls on Pluvicto — how long till they fade?; urinary blood clots 2 years after radiation — doc gives him a bladder tour; darolutamide monotherapy holds the fort, and the hot flashes are finally going away; announcing a new AnCan group for caregivers of people with neuromotor conditions — like Parkinson’s, multiple sclerosis, muscular dystrophy — to be led by Alexa; insurance nixes denosumab for his rapid-onset osteoporosis and insists on Zometa — what’s up with that?; back stateside after overseas visit for radioligand therapy and a brief course of PARP inhibitor — signals are good so far; results of a study (LuPARP) that looked at that combination.
