Hi-Risk/Recurrent/Advanced PCa Video Chat, May 2, 2022
Apologies for the bad link to our Elizabeth Jameson Solo Arts Heal interview. The Marsh pulled the recording to edit it – find it now at https://www.youtube.com/watch?v=D4n2a… Don’t tell Jimmy G or Elliott, but this could be the best yet! She’s an inspiration …
If you’re a Vet and want to be notified when our new Vets Group starts, please let Joe Gallo know at joeg@ancan.org. Right now we are probably going out to the public on June 23; May will be a practice session.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about this and our other 11 monthly prostate cancer groups 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: How do we relate to our prostate cancer? And we back-end a VERY young denovo Mx newbie (rd)
Topics Discussed
Denovo oligoMx gent; group’s take on Covid immunizations; darolutamide fatigue … maybe?; exercise fights HT side effects; PSA creeping on IHT; how do you relate to your PCa??; AnCan’s Speaking Freely; brief snippets – true or false?; chemo plateaus PSA around 17; for Locometz seek Lutathera sites; are v. small changes in insignificant PSA a concern; Pluvicto shortages; 43 yrs old w. denovo Mx.
Jeff Marchi, San Francisco (to Everyone): 3:39 PM: when you sign up with Promise your sample is processed by Color and their genetic counselors talk with you about results. if you have future issues they will work with you.
Thomas Jacobsen (to Everyone): 3:42 PM: Dropping off now. Thanks everyone for your comments. – Tom
MIke Yancey (to Everyone): 3:59 PM: Gotta drop early. Be on next weeks meeting.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 26, 2022
BREAKING NEWS …. AnCan launches 2 new groups in April – Lupus and Pancreatic Cancer. Find more information on our website https://ancan.org under Groups menu tab.
And coming in May …. a Vets Prostate Cancer Group and Chronic Pain Group.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about this and our other 11 monthly prostate cancer groups 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:Perhaps enzalutamide/Xtandi is causing balance issues … sound familiar? And at the end – finding Pluvicto NOW (rd)
Topics Discussed
Peter K manages his own meds; pain issues from AUD; calcium & Vit D; Pluvicto vs Ac225+Lu177; denovo Mx man needs better guidance; balance issues & enz v daro; great report on UCSF’s GU med onc Dr. Borno; Pluvicto fails to hold chemo-naive man; long-term participant thinks about adding treatment
Chat Log
Herb : 3:24 PM: Len sent an e-mail that his eyes are dilated and filled with a dye so he can’t read the screen.
George Rovder Arlington VA (to Everyone): 4:03 PM: https://faculty.mdanderson.org/profiles/patrick_pilie.html
Peter Kafka – Maui (to Everyone): 4:04 PM: Dr. Pilie – Duke Medical school, He is a genitourinary med onc at MD Anderson
George Rovder Arlington VA (to Everyone): 4:05 PM: 2015-2018 Clinical Fellowship, Medical Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX Assistant Professor, Department of Genitourinary Medical Oncology, Division of Cancer Medicine, The Univ. of Texas MD Anderson Cancer Center, Houston, TX
Some may have read the excellent ediorial written by Moderator Ben Nathanson in a recent High Risk/Recurrent/Advanced Prostate Cancer Reminder. Ben explains ‘time toxicity’ … a concept that effects many living with serious disease. If you missed his musings, here they are again:
Treatment that gives us time to live demands time in return. It drags with it scans, blood work, drives to the hospital, doctors running late, computers down, battles with insurance. Part of our gained lifetime is lost in dead time. Toxicity is always in the cancer mix. Financial toxicity has become part of the conversation alongside physiological toxicity, and time toxicity — time lost in an effort to gain time — is joining it. In a thoughtful 2018 essay, physician Karen Daily notes “Much of our patients’ time investments remain invisible to clinicians.” This year, in ASCO’s lead journal, three physicians have taken up the challenge, proposing that clinical trials, when reporting overall survival, distinguish between “Days with Physical Health Care System Contact” and days the patients actually own — “Home Days.” This a new idea only in cancer, say the authors — cardiology and other fields already make these kinds of measurements. When medicine’s best offer is a handful of months, we face difficult choices. Time toxicity casts a shadow over both survival time and quality of life. As we try to balance days added against side effects, it would be good to know how much of the time we’re gaining will be ours to spend.
Reading Ben’s thoughts prompted one of our regular participants to write a reply to us both that touched me to the core. I asked if we could reprint that too, and was graciously given permission on condition of anonymity. Here it is!
Ben, thanks for the article on “time toxicity” in the (recent) meeting announcement. It identifies an important consideration for all to think about in the fight vs. cancer and from my personal experience an impact that changes over time. Your write-up got me to thinking and pushed me to a holistic realization that this is basically an investment decision with expected returns.
For the prostate component of my cancer fight (now 17 years and counting), I did not think about the time investment in the first 14 years that I (and family members) were making to “do battle” (eg lab work, appointments with doctors, scans, treatments, family meetings, insurance challenges and personal downtime / reduced effectiveness in work due to treatment, etc.), It was a “no-brainer” decision and I never considered the tradeoff as the benefits for the opportunity to “continue to live life” due to treatments as my “life” returns were overwhelmingly positive vs.the “investment” required to do battle.
Having retired three years ago and simultaneously entering a new phase of my cancer fight I am aware of the increased time I (and family members) now spend on cancer treatment yet obtaining reduced time for life (and quality of life). I’m now spending significantly more time at Doctors appointments, treatments and longer periods of time post treatment feeling the physical effects of treatment and have begun to recognize I’m going to hit a point where this equation gets out of balance….and I’m not equipped with a decision model to manage that occurrence. Given my personal nature is to grind on stuff (I can make it work, give me time and let me try!) — I’m likely to blow right past the point of equilibrium where time toxicity and balance of life toxicity begin to get out of hand. For much of the first 14 years of my cancer fight I practiced a very large (and for me, healthy) dose of self-denial that I was dealing with prostate cancer. I was able to keep the cancer part of my life cordoned off, did not have significant residual time spent thinking / worrying / etc. about the disease and lived life to the max both personally and professionally. Now, in the last three years I am finding growing quantities of “thinking time” consumed by the disease and also sucking family members…. wife and children….deeper into the cancer battle as discussions / time encroach on them as well increasing the cost of investment (time) in the battle vs. cancer.
Prostate cancer is my second cancer fight, Ten years prior to the prostate cancer diagnosis I was diagnosed with a rare leukemia (rare as it was diagnosed in a limited number of folks (~2,000 / per year in the United States) and was usually fatal shortly after diagnosis as there were no lasting treatments until about 4 years prior to my diagnosis. As a freak outcome of scientific research a drug treatment was developed; the drug was intended for another cancer that had a much larger annual incidence of new cases; the drug was not effective on the targeted cancer but it was very effective on the rare leukemia. And at the time the treatment protocol was 7 days of continuous drip via a small pump one wore around the waist as an outpatient; minimal side effects; and if the first treatment didn’t work a second round was almost guaranteed to work. Talk about lucky! There was no way research funds would have been spent on this cure except by accident — which was exactly the case. The time toxicity for me in my first cancer battle was non-existent and I believe has indirectly helped me in the prostate cancer fight by giving me a dose of optimism and coping skills.
I think the topics raised by both of you….including Rick’s statement on treatment longevity results are important for the group to consider. These are relevant points of management in the cancer battle that I haven’t seen addressed by my oncologists (except one) nor psychologists and psychiatrists that I’ve also used in my treatment.
Editor’s Comment: In the original Reminder, I responded to Ben’s comments by adding one of my own. I pointed out that frequently Overall Survival benefits were shorter than might be expected because trials are often run on patients at a very late stage of their disease. This caveat should be considerd when we see the FDA reporting short life extension, sometimes as few as 2 or 3 months, for newly approved drugs.(rd)
AnCan is proud to announce that we recently joined the Modern Medicaid Alliance, a partnership
between Americans who value Medicaid and leading advocacy organizations. We look forward to
working with the Alliance to educate policymakers and the public about the benefits and value of
Medicaid.
As part of our partnership with the Modern Medicaid Alliance, we will be highlighting the diverse
populations that depend on Medicaid for their health and financial security. Medicaid covers about
1 in 5 Americans, including millions of children, older adults, people with disabilities, and 2million
veterans. Medicaid provides an essential safety net for when Americans need it, providing high-
quality, cost-effective care to more than 73 million people nationwide.
We join the Modern Medicaid Alliance at a critical time. While policymakers debate changes to
Medicaid, the program is enjoying widespread support from Americans. In fact, recent polling
found that 86% of Americans want a strong, sustainable Medicaid program – and fewer than 20%
of Americans support cutting Medicaid funding.
AnCan is particularly interested in furthering Medicaid expansion in all States in order to
promote health equity. Indeed, providing mental health services to veterans and to all those
enduring chronic conditions is an urgent need.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 4, 2022
Next meeting will be on Apr 12, 2022.
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups 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: Heads up for a marathon session this week. And we keep returning to 2 topics …. intermittent hormone therapy (IHT), and of course Pluvicto (rd)
Topics Discussed
original low Gleason progresses to advanced PCa over 21 yr period; do you buffer on resuming IHT; Epstein reclassifies 3+3 to 5+4 with treatment implications; weighing time to Pluvicto availability with a trial now; stay with chemo or shift to Pluvicto?; Herb’s last man under the wire; starting darolutamide (Nubeqa); how long before testosterone returns?; after 5 yrs it’s time for IHT; side effects from chemo; post-Pluvicto – abi, Provenge, or …? ; alternative advanced disease markers; scan concordance is important for Pluvicto; vertebral fracture with advanced PCa may have implications.
Chat Log
Peter Kafka – Maui (to Everyone): 5:23 PM: Has the doctor suggested a PSMA scan while the PSA was up?
Len Sierra (Private): 5:39 PM: Rick, I’ve actually been on complete drug holiday since Jan. 12 of this year, so almost 3 months now. No Lupron, no daro.
Stephen Saft (to Everyone): 5:42 PM: my doctor told me it wouldn’t get approved but I fought for a long time and finally got him to put it through. It was approved and I had the Pylarify PET scan on March 4.
John Birch (to Everyone): 5:58 PM: Stephen, why the the doubt on insurance approval? Thats the isssue I am running into.
Frank Fabish – Ohio (to Everyone): 6:00 PM: Amir Mortazavi at OSU James Cancer Hospital
Stephen Saft (to Everyone): 6:00 PM: That is a very good question. I don’t know. I think the old school thinks that it won’t change treatment so the oncologist doesn’t like the idea.
Len Sierra (to Everyone): 6:23 PM: Steve, the half life of Ac-225 is 10 days and it takes 5 half lives to clear 95% of a drug, so you’re looking at 50 days of washout.
George Rodriguez-Chantilly VA (to Everyone): 6:29 PM: Rick, I need to drop off. Very informative. I’ll reach out later to get some information on what to expect with hormone treatment of Yonsa w/methylprednisolne in concert with Eligard.
Frank Fabish – Ohio (to Everyone): 6:29 PM: Rick I have to go. I have my 3 month check up and blood draw tomorrow. I’ll let you know results.
Ben Nathanson (to Organizer(s) Only): 6:30 PM: Len, aren’t these different half-lives? Isn’t drug clearance a function of pharmacokinetic half-life, not radioactive half-life?
AnCan Herb (to Organizer(s) Only): 6:31 PM: The biological half life is much faster. The unbound compound is excreted, and then the bound drug disappears with its half life. It is a two compartment model
Ben Nathanson (to Organizer(s) Only): 6:31 PM: Right, so less than 50 days
Len Sierra (to Everyone): 6:32 PM: Ben, I believe the greater concern would be the radioactive half life since that is the toxic payload.
Ben Nathanson (to Organizer(s) Only): 6:32 PM: But if it’s out of the body faster than that, it doesn’t matter if it’s still radioactive
Tony D’Errico – Cornwall, Ontario (to Everyone): 6:35 PM: I will see you all soon. bye for now.
Len Sierra (to Everyone): 6:35 PM: I guess we’ll have to consult with a nuclear medicine doc on this..
Ben Nathanson (to Organizer(s) Only): 6:45 PM: Herb, this video? “Lymphocytes as a “Living Drug for the Treatment of Cancer” and Emergence of the NIH cGMP Program to Support Patient Care Innovation” from 3/30?
AnCan Herb (to Organizer(s) Only): 6:46 PM: Yes, that should be it
Ben Nathanson (to Organizer(s) Only): 6:46 PM: Thanks!
John Birch (to Everyone): 7:08 PM: Thanks to all. Need to run apparently tornados are landing in the area.
David Muslin (to Everyone): 7:12 PM: Going to bed. See ya next week.
Stan Friedman (to Everyone): 7:23 PM: Good night. See you next week.
Mark Baldridge – Seattle (to Everyone): 7:57 PM: Thank you everyone for such good information – Kathy and Mark
Len Sierra (to Organizer(s) Only): 7:57 PM: Got to go, Gents. See ya next week.
George Rovder Arlington VA (to Everyone): 7:59 PM: Thank you all. Goodnight. George
Some may have read the excellent ediorial written by 