Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 18, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 18, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 18, 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/

Two new AnCan groups starting this month – 1) Pancreatic Cancer 2) Lupus. Check webiste

Editor’s Pick: Hear about VERY rare form of PCa …. and we revisit metabolic syndrome more than once (rd)

Topics Discussed

Denova Mx Dx …. in Maui!!; germline vs somatic mutations; med onc leaves disease largely untreated; very rare PCa type Dx; did abi cause metabolic issues?; puzzling scalp pain after spot RT to skull base; gabapentin side effects; younger man with denovo Mx has successful Tx; switching to Nubeqa+Orgovyx vs metabolic issues; 2014 participant returns doing well; Dennis Correia back with us; KP caves over Lu177; Pluvicto experiences

Chat Log

AnCan – rick (to Organizer(s) Only): 5:04 PM: Dr. George !!! A leftover from Dominic days

Len Sierra (to Organizer(s) Only): 5:08 PM: Yes, it’s been years since Dr. George S. joined us.

Joe Gallo (to Everyone): 5:16 PM: Rana McKay UCSD

Henry (Private): 5:17 PM: Hey Rick — for the new fellow — recommend triplet therapy per Arasens or Peace? (After PSMA scan of course).

Maria (to Everyone): 5:18 PM: Hi everyone, I just wanted to check in and say Hi, Jeff is enjoying his hormone & zytiga vacation, April PSA is undetectable. You are all in my thoughts…

Joe Gallo (to Everyone): 5:19 PM: Welcome. Thanks for the update Maria.

Joe Gallo (to Everyone): 5:25 PM: Rana Clinic 858-657-7876

AnCan – rick (to Everyone): 5:50 PM: https://doctors.umiamihealth.org/prov…

Alan Babcock (to Everyone): 5:53 PM: I might be in the wrong group. I am 9 weeks out from a prostatectomy. Dr. Correa, from Fox Chase is minitoring my PSA.

George Rovder Arlington VA (to Everyone): 5:55 PM: Alan, This group is for Stage 4 metastatic and Stage 3 Very High Risk.

AnCan – rick (to Everyone): 5:55 PM: Alan – you are best in Peter’s Low/intermediate group that meets every 2nd & 4th Monday same time and place. We know Dr. C very well

Edward Clautice (to Everyone): 5:56 PM: I received lutetium treatment in Germany last week. Cost about $25k. The appointment was made and paid for before the FDA approved pluvitco. The care was very good. They ran daily scans to monitor lutetium attachment to tumor sites. I am looking now to continue pluvitco here in the USA, potentially at the U of Florida. Question:703-463-0490. clautice@verizon.net. Take care, Ed

George Rovder Arlington VA (to Everyone): 5:57 PM: Thanks Ed. Best of luck.

George George Rovder Arlington VA (to Everyone): 6:00 PM: Josh Allen https://www.inova.org/doctors/joshua-…

Edward Clautice (to Everyone): 6:03 PM: Jeannie Aragon-Ching George Rovder Arlington VA (to Everyone): 6:04 PM: https://www.inova.org/doctors/jeanny-…

Joe Gallo (to Everyone): 6:10 PM: Embrlabs.com  Embr Wave

Julian Morales-Houston (to Everyone): 6:20 PM: Nubeqa

AnCan – rick (to Organizer(s) Only): 6:23 PM: Dennis Correia is in the house … please give him a shout out! Welcome back.

Don Kramer (to Everyone): 6:40 PM: I just got appeal approval for PSMA formerly denied by UHC med. advantage. Don’t give up if you are originally denied on a potential option for diagnosis you know is approved by medicare but advantage is denying. will share more next week. great meeting thank you all.

Frank Fabish – Ohio (to Everyone): 6:53 PM: Got to go guys. See you next week.

George A Southiere Jr (to Everyone): 6:59 PM: great to see all the new guys and the old guys.enjoyed the meeting tremendously

Jerry Pelfrey – Mexico (to Everyone): 7:09 PM: Jerry, sorry I have to leave.

Henry (to Everyone): 7:12 PM: Thanks all; I have to drop off now. Have a great rest of your evening, gents!

MIke Yancey (to Everyone): 7:17 PM: Enjoyed being on this call for the first time. Plan to join again next week. Gotta run for tonite.

John Birch (to Everyone): 7:19 PM: Need to go, thank you everyone for sharing and info

Time Toxicity raises thoughts …

Time Toxicity raises thoughts …

Time Toxicity raises thoughts …

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’s ‘IDLE’ Howard Wolinsky hits the news!!

AnCan’s ‘IDLE’ Howard Wolinsky hits the news!!

AnCan’s ‘IDLE’ Howard Wolinsky hits the news!!

Going back many years, there has been debate around what is and what is not considered to be cancer. As an old-timer in the field of cancer advocacy I recall this debate ignited by UCSF breast cancer surgeon extaordinaire Dr. Lara Esserman when she spoke about IDLE in a Lancet article. IDLE stands for Indolent Lesion of Epithelial Origin.  Early blogger Mike Scott latched onto this since the concept was supported by her UCSF prostate cancer colleagues, Drs. Peter Carroll and Matthew Cooperberg. Mike’s “new” Prostate Cancer Infolink article,New Terminology, IDLE threats, and human behavior (about cancer) from May 5, 2014 is defintiely worth a read!

Fast forward 8 years, and we are back in the midst of the same debate as to whether some suspect lesions should or should not be considered cancer. And who is that at the heart of this …. none othre than our own Advisory Board member, Howard Wolinsky stirring up the pot yet again along with urologist buddy, Dr. Scott Eggener from University of Chicago. Howard and Dr. Scott got to talking and rekindled this debate as to whether calling a suspicious lesion cancer too early can result in more harm than good. Howard, for example, had a life insurance policy application rejected in 2010 becasue of his prostate cancer diagnosis that has only produced one diagnosed Gleason 3+3 lesion in multiple screenings and biopsies over almost 13 years!. Dr. Eggener was motivated to write an journal article; he leads leads an illustrious group of authors that includes Matt Cooperberg … and of course Howard representing the patient voice in a controversial piece that appears in ASCO’s Journal of Clinical Oncology this month titled Low Grade Prostate Cancer: Time to Stop Calling It Cancer Low Grade PCa – not cancer HW JCO 0422 .

While Dr. Cooperberg maintains his opinion, Peter Carroll may no longer wholly endorse that view. He and another of our Advisory Board members, Dr. Jonathan Epstein, are preparing rebuttals. Another well respected medical professional went as far as to say privately,”Unfortunately I really struggle with this. Why do we need to infantilize patients. We don’t call metastatic cancer the ‘monster'” There are definitley two sides to the coin ….. from the anxiety the ‘C-word’ provokes and repurcussions that Howard found out can be financial; to failing to properly acknowledge the gravity and treatment of precancerous lesions medically and otherwise.

Read the Chicago Sun Times report here; and Howard Wolinsky’s own take posted on his blog here. To see Howard and Scott Eggener speak about this yourself, listen to them on Chicago NBC news ….  then you decide!!

Breaking News: AnCan Partners with the Modern Medicaid Alliance

Breaking News: AnCan Partners with the Modern Medicaid Alliance

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.

 

See the full release by clicking here.

Special Presentation: Prostate Cancer and Treatment Regret

Special Presentation: Prostate Cancer and Treatment Regret

In April, we had Dr. Christopher Wallis (Assistant Professor of Urology, Department of Surgery, University of Toronto and Urologic Oncologist) give a talk to our AS group titled “Prostate Cancer and Treatment Regret”, a common phenomenon patients experience after making their choices for treating their prostate cancers.

Dr. Wallis found in his research that about 13% of patients with localized disease overall have second thoughts about their choices. This includes patients on active surveillance. The surgical group had the most reset followed by radiation and AS.

“Every choice has risks and benefits. The goal isn’t just to cure the disease but to live a better quality of life” Wallis said.

He said that in counseling patients, one of his challenges is that there is not “a perfect correlation between symptoms and disease.” In other words, some patients are OK with losing their sexual potency—a major concern—while others are devastated. Some have similar reactions to incontinence. “Patient-centered care improves outcomes,” he observed. Walis said long-term, “financial toxicity” from treatment also is a largely unexplored topic.

Watch this presentation here:

 

Slides will be posted when available.

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 Chat, Apr 18, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 12, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, 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: We are talking lots of appetite, diet and exercise to manage ADT & chemo this week (rd)

Topics Discussed

Appetite issues; enz and dizzy spells; ARASENS darolutamide trial; hot flashes … again; creeping up on darolutamide ; PSA testing – to how many decimal places?; 2 men consider mitigating ADT with exercise and more; not all PCa in same man makes PSMA; Pluvicto continues to bring PSA down

Chat Log

Marc Valens (to Everyone): 3:23 PM: Try Larabars. No added sugar, just fruit and nuts

AnCan Herb (to Everyone): 3:38 PM: Enzalutamide can cause hypertension, but no information on postural hypotension

Len Sierra (to Organizer(s) Only): 3:40 PM: From RxList website: Stop using enzalutamide and call your doctor at once if you have: dizziness, spinning sensation; a seizure (black-out or convulsions);

AnCan – rick (to Organizer(s) Only): 3:43 PM: Len – that’s the concern around it causing seizure

AnCan – rick (to Everyone): 3:44 PM: ARANOTE and ARASEC

ARANOTE (Saad) …… https://www.urotoday.com/video-lectures/clinical-trials-for-my-patients-prostate-cancer/video/mediaitem/2533-aranote-darolutamide-in-addition-to-adt-vs-adt-in-metastatic-hormone-sensitive-prostate-cancer-mhspc-fred-saad.html?utm_source=newsletter_10261&utm_medium=email&utm_campaign=clinical-trials-for-my-patients-in-prostate-cancer&acm=30276_10261

ARASEC (Shore) Aranote ….https://www.urotoday.com/video-lectures/clinical-trials-for-my-patients-prostate-cancer/video/mediaitem/2548-darolutamide-plus-adt-in-metastatic-hormone-sensitive-prostate-cancer-the-arasec-trial-neal-shore.html?utm_source=newsletter_10261&utm_medium=email&utm_campaign=clinical-trials-for-my-patients-in-prostate-cancer&acm=30276_10261

James Barnes (to Everyone): 4:43 PM: I also was on Enzalutimide and could not tolerate the anxiety and brain fog. I have been doing much better on Aberaterone for the past 6 months.

Frank Fabish – Ohio (to Everyone): 4:45 PM: Hey guys got to go. Thanks for your input. See you next Monday.

Jim Ward (to Everyone): 5:08 PM: Gotta run, gents. Good night!

Len Sierra (to Organizer(s) Only): 5:12 PM: G’night, Gents.

Peter Monaco (to Organizer(s) Only): 5:17 PM: Good evening gents!

John Birch (to Everyone): 5:17 PM: Great news on the numbers Dennis! Need to go, thanks everyone!

AnCan Herb (to Everyone): 5:18 PM: I gotta go. For those celebrating Passover, I hope you enjoy your Seder. And then for those celebrating Easter, all the best.

Care Partners and a Woman’s Perspective

Care Partners and a Woman’s Perspective

Care Partners and a Woman’s Perspective

Peter Kafka’s words this week allow us to plug our wonderful Stage 3 & 4 Cancer Caregivers Group …. although Peter’s words should encourage us to consider changing its title! I have seen them in compassionate action this week reaching out to a caregiver whose daughter was recently diagnosed with a difficult T3 lung cancer, and they are magnificent.

Led by  former USAF Lt. Col and Women’s Health Nurse Practitoner, Susan Lahaie, our other Moderators include Pat Washburn and Barbara Dyskant, all of whom have lost partners to cancer – Susan and Barbara to prostate cancer, and Pat to breast cancer. The Group meets 1st & 3rd Tuesdays at 8.00 pm Eastern in our Barniskis Room. While all caregivers are invited to both groups, we do not discuss grief and bereavement during our 1st Tuesday meetings. Check out the Group and sign up at https://ancan.org/cancer-caregivers/ 

Back to Peter Kafka’s thoughts that speak volumes adn endorse the message above:

A WOMAN’S PERSPECTIVE

I recently stumbled upon a book published back in 1897, THE WOMAN IN BATTLE, by Madame Loreta Janeta Velazquez.  I have not finished it at this writing, but it has already stimulated a number of thoughts relative to our individual journeys with prostate cancer.

Madame Velazquez was a young and quite ambitious woman who disguised herself as a man and fought in the United States Civil War as an officer in the army of the Confederacy.  What intrigues me about her story is that it is a candid first-hand account of battles, conflict, life in the masculine military and observations of male attitudes and behavior from a female perspective.  I don’t want to go into detail about her accounts other than to say that she charged right into the fray, doing battle from the start on the front line at the Battle of Bull Run.  

I bring this story up as I said because I find it relevant to my own “battle”, and perhaps yours as well, with prostate cancer.  Many of us on this journey have female partners who are in their own way affected by the nature of our own infliction with prostate cancer needing some form of treatment and intervention.  But we rarely, if at all in our meetings hear of this experience from the female perspective.  I know that we (AnCan) and other support organizations facilitate gatherings for caregivers that give partners some outlet of expression.  But for myself and many of you most of our female partners would not categorize themselves at “care givers”.   They are our partners who have been thrown into the fray by no choice of their own and have tried to navigate their way through the obstacles that our disease has presented.

Recently at one of our meetings a participant asked if I knew of a woman that could speak to his wife about what to expect and experience relative to a course of ADT drugs which he was about to embark upon.  This request stopped me in my tracks because I had never had such a request before.  It took me a while but I was able to find a woman who was of a similar age and experience who was willing to dialogue with this man’s wife.  It is never hard to find another man with experience to speak with regarding any number of prostate cancer treatment protocols.  I have often relied on other “brothers” as many of you no doubt have as well.  But for those of us who have female partners, they are sometimes left adrift to fend for themselves, only hearing our own complaints and miseries and sometimes the opinions of our treating physicians.  

But it is important to remind ourselves that if we are blessed with a woman in our life, that they too are going through changes and challenges as a result of our prostate cancer diagnosis.  Their experience and perspective are just as valid and important as our own.  This is not just a MALE disease because it can affect many of the ways that we relate to female partners, physically, emotionally and mentally.  It is not often that female partners join in on our calls, but they are never excluded from most of our discussions and their perspective is very much valued.

Cancer Caregivers | Virtual Support Calls For Cancer Caregivers

 

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 18, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 4, 2022

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

Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 18, 2022

Lu177 PSMA 617 FDA Approval and Access

Lu177 PSMA 617 FDA Approval and Access

On Wednesday, March 23 of this past week, the FDA finally approved Lutetium 177 PSMA 617 for treatment of PSMA (prostate specific membrane antigen) sensitive metastatic castrate resistant prostate cancer (mCRPC). The ligand, lutetium Lu 177 vipivotide tetraxetan, has a commercial name of Pluvicto, and is made by Advanced Accelerator Applications, a subsidiary of Novartis. Novartis is an AnCan sponsor – they have not asked us to make this post.

Pluvicto delivers the radionuclide agent lutetium to cells expressing PSMA . According to Dr. Jeremie Calais at UCLA, “The PSMA-targeted radioactive agent preferentially atttaches to cancerous cells, not the normal tissues”.

You can read the Novartis press release here, and an independent review from Prostate Cancer Foundation here.

The approval left a lot of open questions, several of which AnCan was able to answer when we spoke with AAA on Friday. There are a couple of quirks in the approval and availability.

  1. Use of Pluvicto (Lu177 PSMA 617) is post-chemotherapy
  2. Use requires a Ga68 PSMA 11 scan – not Pylarify. AAA received a companion approval for Locametz, a kit that makes that scan widely available. It is not clear if a previous Pylarify scan will be grandfathered
  3. There is no Medicare pricing agreement as yet
All the managed access trial sites have now been closed. Each hospital will now have to approve local use itself – Hopkins, by way of example. has indicated this could take months. AAA has suggested the following sites may be ready to treat immediately:
  • University of Chicago
  • Tulane
  • Mount Sinai, NYC
  • UCLA
In the interim AAA Patient Connect is geared up to provide financial assistance. It can be reached via the number on  https://pluvicto.com 844 638 7222
For a good indicator as to where Pluvicto could soon be available, you can check the sites where AAA’s Lutathera, a lutetium treatment for certain neuroendocrine cancers, is available. https://www.lutathera.com/find-a-treatment-site/
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 18, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 21, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 21, 2022

 

Apologies to all this week as the Reminder did not go to the full distribution list. My error whilst on the road! Nonetheless, you can catch up now … (rd)

Next meeting will be on Apr 4, 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: Peter K says “We have to strategize our own treatment!” And how can we fail to mention Jerry Dean’s incredible courage and attitude?!? (rd)

Topics Discussed

Prostate Cancer brain mets and Tx; new de novo Mx man discusses his Tx path; pembro will bve next Tx for MSI-H gent; what’s next – darolutamide, Provenge??; we have to strategize our own treatment; metformin; Orgovyx; super-broccoli; AUA Summit; Lu177 PSMA in Phoenix

Chat Log

Peter Kafka – Maui (to Everyone): 5:38 PM: Was the brain cancer Prostate cancer? I might have missed that.

William Franklin (to Everyone): 5:41 PM: He saiid it was unrelated.

Peter Kafka – Maui (to Everyone): 5:53 PM: IMUDX swab test provides info about whether Keytruda will be tolerated.

Pat Martin (to Everyone): 5:57 PM: Thanks to all.

Peter Kafka – Maui (to Everyone): 6:09 PM: What about Provenge at this point?

AnCan – rick (to Everyone): 6:19 PM: Metformin

Julian Morales-Houston (to Everyone): 6:41 PM: https://www.pcf.org/blog/broccoli-and-prostate-cancer-whats-the-connection/

Julian Morales-Houston (to Everyone): 6:44 PM: I eat roasted brocolli along with brussel sprouts on a regular basis.

George Rovder Arlington VA (to Everyone): 6:45 PM: Thanks Rick.

Frank Fabish – Ohio (to Everyone): 6:47 PM: Got to go guys.

Len Sierra (to Everyone): 6:48 PM: That PCF site said eating broccoli had the anti-inflammatory effect of one Advil. So, take an Advil and call me in the morning.

Jeff Marchi (to Everyone): 6:48 PM: can’t take advil, on blood thinners