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.
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?
Aloha, friends! We have some wonderful thoughts once again from our Board Chair, moderator, and most important, our dear friend Peter Kafka. I found myself nodding to myself many times while reading this, and I’m sure you will too. Thank you Peter, for voicing what our thoughts so beautifully!
As I sit down to write this reminder notice about our gathering on Monday my thoughts are a little muddied. I have been thinking about this responsibility for several days but my body has kind of been feeling “junk”. As a result, the bright, cheery and creative thoughts have been buried in the pickle barrel of my mind and the surface seems clouded with a scummy brine. What to do?
Anyone living with cancer, and particularly those of us under some form of ongoing treatment go through cycles of feeling out of sorts. Nothing you can point to in a symptomatic sense that is the source of the malaise, just a general feeling of “BLAH”. Enough so that it can color the day gray.
In cycles such as this, whether short or long I have learned to show up as best I can. I don’t want to drag others around me into the clouds. I don’t need sympathy, or well-intentioned inquiries as to; “what’s wrong”? Nothing is wrong in my best guess. It is just part of the rhythm of this cancer dance and I am pretty used to it after all these years.
I am very aware that there are many who are battling with much more challenging circumstances at this moment. Whether it be those on our calls who have been very candid about their own prognosis or progression of prostate cancer, or the many thousands around the world who are fighting for their lives at home or in hospitals against the ravages of the Covid-19 virus. By now, after a year into this worldwide pandemic there are not many of us who don’t have some degree of connection to others who are or have suffered with this virus.
We are fortunate that we have such a strong body of peer support for our journey with prostate cancer. We can be there for each other and lift up the spirits of those who might be scared or challenged. We have all been there.
So, it is with these thoughts that I would invite you to join our ongoing conversations and discussions about our challenges with a diagnosis of prostate cancer as we support each other. Our general focus is on the bright side, the positive and encouraging medical advances and knowledge about our disease as well as our individual victories and successes. But we are certainly attuned to the darker side of this disease and very much aware of the threat.
We at AnCan through our Virtual online/telephone weekly support meetings and advocacy, work hard as peers to provide whatever support and backup as we can in your journey with prostate cancer. But we don’t claim to have all the answers. We encourage you to share your experiences. We learn from each other. Keep connected, information is power! We are always there for you but you are “Your Own Best Advocate!”
Be Your Own Best Advocate – Something we say a lot, definitely. And yeah, we wear it proudly on our shirts too. But we really mean it!
As an advocate myself, I truly believe change happens at the community level, and that includes in the doctor’s office as well. Times change, opinions change, and we’ve seen that a lot with Active Surveillance in particular. What was once controversial, is now a common discussion at the urologist. I’m so glad we had our Active Surveillance & Beyond! webinar series to make this even more mainstream.
