On June 2nd, Dr. Michael Schweizer (Assistant Professor, Division of Medical Oncology University of Washington School of Medicine) spoke at our Active Surveillance Virtual Support Group with a presentation titled “Meds: A potential new path to keep men on AS?”
As a medical oncologist of the Fred Hutch Cancer Center in Seattle, he usually sees no patients on active surveillance for low- to favorable intermediate-risk prostate cancer. But this changed when he conducted a study of how apalutamide, a drug used in men with more advanced cancer, on men on AS.
Dr. Schweizer said: “My goal is to help reduce the morbidity and mortality associated with diseases like prostate cancer through developing novel drug therapies.” He plans to study the impact of other meds on men on AS to offer a new way of managing AS.
We want to thank Dr. Schweizer for answering questions!
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 Video Support – Men & Caregivers Recording, June 7, 2021
Editor’s Pick: Wow – over 50 in the Room this week, so lots of great stuff!!! From conventional vs unconventional ways to treat advanced PCa to multiple testimonies on how exercise combats fatigue; and, LHRH & heart risk – you decide! (rd)
Topics Discussed
ASCO ’21 Quick Highlights; Centers of Excellence vs independent GU Med Oncs; LHRH comparisons; compassionate use for Lu177 PSMA; combatting fatigue w. exercise; itching and rash site reaction to Lupron; enzalutamide vs apalutamide; predinisone use when diabetic; how long can you stay at your PSA nadir?; mistaken testosterone reading gets a laugh; lipid panel considerations; more & more chemo … & still more!; LHRH & heart risk again today; health anxiety raises its ugly head.
Chat Log
AnCan – rick (to Organizer(s) Only): 5:32 PM: 47 online + callers – I think that’s a record!
Jake Hannam (to Organizer(s) Only): 5:33 PM: I think so too
Len Sierra (to Organizer(s) Only): 5:33 PM: Yes! Amazing! Btw, now you can see why I could never regurgitate Howard’s incredibly strange and complex journey!
richard wassersug (to Everyone): 5:46 PM: Rick, You are right!
Bill Franklin (to Organizer(s) Only): 5:48 PM: This might be the biggest group I’ve seen yet. I still had a little a day or two after the treatment. I was good for a long time but then, unfortunately it came back. I’ve actually been having a lot of issues lately. Hopefully you’ll get to feeling better soon.
Mark Perloe (to Everyone): 5:55 PM: https://clinicaltrials.gov/ct2/show/NCT00859781?term=LU+177&cond=prostate+cancer&cntry=US&state=US%3ACA&city=Los+Angeles&dist=50&draw=2&rank=3
Pat Martin (to Everyone): 5:59 PM: Resistance training also builds BONES. Absolutely necessary while on ADT
Joel Blanchette – Reston, VA (to Everyone): 5:59 PM: We are at 50 in the room.
Mark Perloe (to Everyone): 6:02 PM: If you are on a statin, Co Q10 can reduce muscle issues.
AnCan – rick (to Jimmy Greenfield): 6:29 PM: What did we do for you today,
Jimmy G Jimmy Greenfield (Private): 6:30 PM: Just being yourselves, fantastic.
Paul Freda (to Everyone): 6:46 PM: I have the belly problem too. It is very frustrating and I have not been able to get rid of it. ….. I do feel better about it when resistance training exercsing at the fitness center.
Jimmy Greenfield (to Everyone): 6:48 PM: I’m with you Paul. Better to be strong-fat!
Bill Franklin (to Everyone): 6:51 PM: I did just shy of 2 years on lupron and never experienced any type of itching, rash, or hives after my shots.
Jeff Marchi (to Everyone): 6:53 PM: 4 years and I have no issues, can’t even remember which hip it went in
Pat Martin (to Everyone): 6:53 PM: How big of a percentage of T production is covered by Abi alone?
Herb Geller (to Everyone): 6:56 PM: Theoretically, Abi alone should do the job. But it requires some risk taking to go that route. Abi should block all T production independently of LHRH.
Jake Hannam (to Everyone): 6:59 PM: Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones by Wassersug, et al
Mark Perloe (to Everyone): 7:00 PM: BNP is used in US to monitor CHF, but not in healthy people.
Pat Martin (to Everyone): 7:03 PM: I’ll be getting an Eligard shot and PSA test this Wednesday.
AnCan – rick (to Len Sierra): 7:09 PM: SSRIs are anti-depression; he needs an anti anxiety
Len Sierra (Private): 7:09 PM: They are also anxiolytics, Rick. Anyway, anxiety and depression go hand in hand.
AnCan – rick (to Len Sierra): 7:11 PM: don’t agree with you – I don’t suffer from anxiety
Jimmy Greenfield (Private): 7:11 PM: Yes! Not nervous, I’m just excitable you know. Shingles vaccine shot is killing me!
Len Sierra (Private): 7:12 PM: Because you’re taking an SSRI or SNRI.
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 25, 2021
PLEASE NOTE: June metings are NOT on our regualr schedule due to the calendar quirk of 5 Tuesdays. June Schedule will be:
Tue, June 1 @ 6 pm Eastern – Peter K
Mon, June 7 @ 8 pm Eastern – rd
Tue, June 15 @ 6 pm Eastern – Len
Mon, June 21 @ 8 pm Eastern – Herb
Editor’s Pick: Gent sees PSA progression and control – but no other signs of disease; and new trial offers two radionuclides concurrently – but beware of heavy side effects. (rd)
Topics Discussed
BAT and radionuclide trials; PSMA PET scans in W. Los Angeles; disese progression but no physical signs; darolutamide; is searing pain from abi?; HDR+IMRT+HT; double radionuclide trial considered despite side effects; sweet smelling urine – keto bodies?; why not biopsy lymphs on Dx; chemo diminishes tumors everywhere
Chat Log
Joe Gallo (to Everyone): 3:23 PM: PTEN?
Ravi (to Everyone): 3:34 PM: I contact the company that makes the Pyl-PSMA. They were very confident of May end. Joe Gallo (to Everyone): 3:40 PM: Anyone interested Vet contact Alexander.Alas@va.gov Research coordinator at the West VA in LA. 310-478-3711 x 41399 or contact me joeg@ancan.org
rick – ancan (to Peter): 4:11 PM: Peter – Ken’s email is ken_anderson@ancan.org 480 540 8926 Joe – joeg@ancan.org 215 499 4001
Joe Gallo (to Everyone): 4:35 PM: Apparently there is an opinion from the ASCENDE RT. In higher risk cancers (unfavorable intermediate risk and high risk), recent results from the ASCENDE RT trial show a benefit in recurrence free survival for high risk prostate cancer patients who undergo brachytherapy (LDR in the case of the study), as a boost after external beam radiation.
Julian Morales (to Everyone): 4:43 PM: Thanks Joe.The Brachy RO want to do HDR but will discuss with IMRT RO to see which is better before or after.
John Ivory (to Everyone): 4:47 PM: Quick public service announcement: Our own Jimmy Greenfield will be performing tomorrow night as part of AnCan’s collaboration with The Marsh theater. He’ll be singing and playing ukulele and will be talking about how the arts have helped him live with his disease. Will take place here: tomorrow at 10:30 ET/9:30 CT/ 7:30 PT here: https://themarsh.org/soloartsheal/
Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 17, 2021
Editor’s Pick: When the standard of care works and has not been tried, should the doc recommend an unproven trial? Also, is it true to say you’ll never come off ADT? (rd)
Topics Discussed
Standard of Care vs Trials; Actinium 225 vs Lu 177 PSMA trials …. personal experiences; are lung nodules really PCa?; Vets PSMA trial; what’s NGS?; shortness of breath and Xgeva; darolutamide/rosuvastatin interaction; using a heart rate monitor to exercise; ADT and metabolic syndrome/ lipid panel; enz/abi switch works; telling cancer pain from inflammation; enzalutamide holiday; is lifetime ADT really the case?; 1.7 PSA allows for Axumin scan; when to do Provenge; brachy+IMRT+HT; neuropathy remedies; RT for recurrence
Chat Log
Paul Freda (Private): 5:30 PM:
Rick How long after beginning a drug like Xtandi should one wait to do a blood test to see if it is working ?
rick – ancan (to Paul Freda): 5:32 PM: 30 days
Paul Freda (Private): 5:32 PM: OK thanks
rick – ancan (to Everyone): 5:51 PM: Homogeneity of Mx PCa …. https://www.fredhutch.org/en/news/center-news/2016/02/metastatic-prostate-cancer-and-precision-oncology.html
rick – ancan (to Everyone): 5:51 PM: http://www.eurekalert.org/pub_releases/2016-02/fhcr-poc022516.php
rick – ancan (to Everyone): 5:57 PM: joeg@ancan.org
Bruce Bocian (to Everyone): 5:58 PM: My son is a Major in the Corps!
sylvester mann (to Everyone): 6:05 PM: Thanks to everyone but I must leave. Best regards.
Joel Blanchette – Reston, VA (to Everyone): 6:06 PM: Contact: Alex Alas 310-478-3711 ext 41399 Alexander.Alas@va.gov West LA VA Hospital Contact.
rick – ancan (to Everyone): 6:06 PM: Tx Joel!
Bruce Bocian (to Everyone): 6:11 PM: My bike is in a cycle-ops, works b
rick – ancan (to Everyone): 7:03 PM: gabapentin/Neurontin
rick – ancan (to Everyone): 7:04 PM: Lyrica/pregabalin
Richard Maye lives with Gleason 3+4 prostate cancer and participates in AnCan’s Active Surveillance and Low/Intermediate Video Chat Groups. In communications with AnCan, Richard had thoughts on how he responds to QoL issues surrounding his diagnosis, that we encouraged him to blog. (rd)
AnCan Participant Richard Maye Muses on Quality of Life
I have Prostate Cancer! Now what do I do? After receiving my diagnosis in November 2018, a month prior to turning age 71, I knew that it was imperative for me to come to terms with not only understanding this disease, but what did this mean for how I had previously viewed living out my life.
While I had talked about Quality of Life, the ideas that I included in that term were vague and general. Terms such as: Travel (where, when?); Continue to Work at least part time (doing what? for how long?); Help other People in need (Who, Where, How?); …. you get the point. I also used the term when I looked back at my Father’s end days. My Father had lung cancer and advanced metastatic prostate cancer. His end days were not filled what we would call a Quality of Life. Twenty years ago, the treatment option for his prostate cancer was chemo therapy, an option that he made clear would not be considered. I respected him all of my life including in this life decision, and watched how he lived his days with determination and without complaint.
Now, this is different, this is me. The diagnosis, while generally favorable, caused a sense of urgency for me to decide how I would live my days. Given my long-term PSA history I had researched prostate cancer, some of the treatments, side effects and related issues. I started with the question – did I believe the diagnosis? To answer this important starting point, I had a Genomic Test and also a second opinion. From there I spoke with the Urologist, Medical Oncologist, Radiation Oncologist, and two family practitioners. Research led me to the Prostate Cancer Foundation, to AnCan, UsToo and other invaluable resources. It was very important to include my wife in every step of this process. As a man of faith, I knew I had to put this in God’s hands and trust Him for guidance.
So here I was with all of this information and consultation, but it still came down to how am I going to live with this? During my administrative career as a senior administrator in healthcare to make important decisions I used this analytical process: Identify the problem; Make it a priority; Evaluate its scope; Assess the potential impact; Develop a solution; Make the decision; and, Implement it. That process is the hinge upon which the gate of my success rested.
Using that approach forced me to decide what would become my operational parameters for the term Quality of Life going forward. It ended when I told my wife and physicians that I was going to respect this cancer BUT not fear it. This means that I was not going to rush into treatment, I would go on Active Surveillance, modify my living standards but not live in fear. Here is a small example of an area included in my Quality of Life Guide. Nutrition and Diet are important to all of us no matter our health status and it plays a big role in the prevention and fighting cancer. If I want to have a piece of my grandchildren’s birthday cake, have a cocktail with our son, share a bottle of wine with my wife, I will do so and not stay awake at night wondering if I just promoted my cancer to grow. Yes, I have reduced the intake of sugar, alcohol, red meat and consumed an ocean of decaffeinated green tea, eat more vegetables than ever in my life, vigorously exercise every day and laugh.
The risk and side effects of the various treatments that are available today along with the potential for the cancer to return were weighed heavily in my decision process. Understanding the risk and consequences, I decided to wait, but wait watchfully in Active Surveilance. With regular monitoring of my PSA, I have postponed having another biopsy and glad that I did, given the trend toward using the Transperineal procedure. New diagnosis and treatments are being announced frequently.
Understandably there are men in different stages of their cancer than I, but the point is this. Define what Quality of Life means to you. Look at your life as it is currently, your life expectancy, family, career and then determine what will be your ROL (Return on Life) for the remainder of your days.
According the Social Security actuarial tables, my life expectancy is another 12 years. That’s about 4,400 days. For now, I can go about the business of living instead of being plagued by anxiety, depression and roller coaster emotions.
