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.
Dr. B.J. Miller’s Prognosis Declaration Can Revolutionize the Quality of Your Treatment Path
One of the most compassionate, influential and remarkable docs I have had the great fortune to encounter since I got into this biz, is Dr. BJ Miller. We are honored to have BJ on our Advisory Board, and while we rarely speak live, I consider him a friend.
More significantly, a couple of men lost to this disease who I have known well, welcomed BJ to their medical teams …. and he made a huge difference to them. In a recent webiinar “Making Medical Decisions”, BJ shared a revolutionary document with us ….BJ’s Prognosis+Declaration
All too often medical teams put their foot in their mouth …. and sometimes unwittingly yours, when they provide an unrequested prognosis for your situation. Some may want to know how serious their disease is .. or how long they have to live; others frequenbtly do not. The Prognosis Declaration offers four (4) options from knowing everything to knowing nothing, or maybe having your caregiver know but not you. You determine what you want to hear, and you give the Prognosis Declaration to your medical team upfront ….. brilliant! The form was developed by one of BJ’s patients who lost his wife to cancer.
The whole webinar, Managing Your Medical Decisons, can be heard here – it’s truly worth a listen.
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.
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!”
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 12, 2021
Editor’s ChoiceBiTE discussion …… and hear from a man with metastatic disease that is now in remission with no hormne therapy required. (rd)
Topics Discussed
Advanced disease & ‘bispecific’ alternatives; lupus hits one of our men post ADT; handling depression; starting chemotherapy with lung nodules; viability of spot RT vs systemic Tx; dealing with long-term and intermittent ADT mentally; MX disease stabilizes with no further HT; managing your own GU med onc
AnCan Barniskis Room (to Everyone): 4:20 PM: Apologies for being late everyone
Bryce Olson (to Everyone): 4:23 PM: what is the pros/cons of BITE vs. Lu177. Why BITE over that. BITE just feels less direct, and you’ve got to get the CD3 cells into the tumor and tumor microenvironment could stop that from happening in BITE without some TKI that focuses on myeloid cells
Bryce Olson (to Everyone): 4:23 PM: I wanted to ask directly but my mic isn’t working
Herb Geller (to Everyone): 4:31 PM: The radiodirective therapies are more advanced with more data to support them. All the BiTEs are Phase 1, and have many more side effects. You are coorect that BiTEs are less direct, as they depend upon activating T cells and all the current ones are dealing with issues of T cell depletion.
John Ivory (to Everyone): 4:39 PM: Right, Peter. It’s unfortunate that seeing a psychiatrist is seen as controversial. I’ve been to a number of them.
Bryce Olson (to Everyone): 4:47 PM: Really sorry Rusty. I’ve been there before and I know how shitty the depression can be.
Rusty (to Everyone): 4:57 PM: I hurt and tired. I need to go bed.
AnCan Barniskis Room (to Rusty): 4:58 PM: From David Muslin to Rusty- feel better
Herb Geller (to Everyone): 5:42 PM: He seems fine, but the real issue is the approach he takes — why 10 sessions? Is this SBRT? But I think you may need more systemic approaches.
AnCan Barniskis Room (to Organizer(s) Only): 5:46 PM: Is he still on ADT?
George Southiere MD (to Everyone): 6:02 PM: Thanks to everyone for being here !
Pat Martin (to Everyone): 6:03 PM: Dxed with Gl 10 all 12 cores + with up to 80% cancer. In 2014. Pat Martin (to Everyone): 6:06 PM: Rp, ADT for 18 mos, Vacay, Rad with ADT, Lupron Zytiga for another 21/2 years, Vacay, PSA has come back from less than 0.03 to 0.59 in 6 months. last 3 months show a PSADT of 2.1 mo. Washington state. Am at Fred Hutchinson
