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.
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
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.
Use of Pluvicto (Lu177 PSMA 617) is post-chemotherapy
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
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, 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?
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
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 7, 2022
It’s diet coke, spam and bacon wrapped twinkies for our meeting this week!
Next week’s meeting will be on Tue, March 21. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights! Almost done with this crazy schedule. Come April, we are back to a normal schedule – 1st & 3rd Monday at 8pm, and 2nd & 4th Tuesdays at 6pm – all Eastern. All AnCan’s groups are free and drop-in – join us in person sometime!
Editor’s Pick: Recurring themes throughout this week – QoL and treating older Gents, heart/BP issues + old faves like Provenge, Lu177, immunotherapy and intermittent HT (rd)
Topics Discussed
Best treatment for asymptomatic 94 yr old with heavy tumor buruden; melatonin?;resumption after IHT; changing diet and exercise may have brought results; should clinical trials precede FDA approved Tx; Provenge vs newer immunotherapies; “How not to die” diet; switching HT regimen; William Hurt – alternative medicine; darolutamide/Nubeqa works; you can delay initial Tx for int/hi-risk PCa; ‘direct heart risks; more heart chat and older men discussions; are ttrial stes playing G-d with Lu177 patient selection; obtaining darolutamide … & Provenge.
Chat Log
6:08 PM Mike A to Everyone: i received the 4th covid shot in Seattle. Anyone being treated for cancer at UW hospital qualifes
6:22 PM Julian Morales-Houston to Everyone: Just saw Dr E today!
6:26 PM Joe Gallo to Everyone: Dr. Eleni Efstathiou Medical Contact details eefstathiou@houstonmethodist.org
6:29 PM Julian Morales-Houston to Everyone: her office: 346-238-4496; clinic: 713-441-9948
6:31 PM John Antonucci to Everyone: quite a few articles on melatonin and PCa actually. I haven’t read any yet
6:35 PM AnCan – rick to Everyone: Hi Gents …. am in DC to lobby for AUA. Have a reception but will be back in about 45′
6:44 PM Julian Morales-Houston to Everyone: HCTZ
6:45 PM AnCan – rick to Everyone: I could not tolerate HCTZ when they first put me on it with lisinopril. Been on lisinopril alone for more than 11 years. Very low dose.
6:46 PM AnCan – rick to Everyone: Guys …. gootta run fo rthe last 45′ of this networking reception
6:46 PM Herb to AnCan – rick: I’m having trouble with amlodipine edema.
6:46 PM Len Sierra to Organizers:m Ciao, Rick!
6:47 PM Julian Morales-Houston to Everyone: For BP I am on losartan/HCTZ 100/12.5 + Amplodine+Bystolic 10 MG
6:50 PM Mike A to Everyone:m thanks everyone, need to drop
6:56 PMLen Sierra to Everyone: MSI – Microsatellite Instability
7:00 PM Michelle G to Everyone: How do you know what biomarkers you have?
7:00 PM Len Sierra to Everyone: You ask them to do genetic testing, Michelle.
7:01 PM John Antonucci to Everyone: PSA is a biomarker. Genetic ones are detected with germline and somatic gene testing.
7:01 PM Michelle G to Everyone: Thanks Len. We had that, I believe. So if they didn’t identify one, then he doesn’t have a specific biomarker?
7:04 PM Joe Gallo to Everyone: Do you mean DNA variant(s) eg. BRCA2 vs. biomarker? Biomarkers are tests.
7:08 PM John Garbin to Everyone: Does anyone know what William Hurt prostate cancer status was when he was diagnosed in 2018? Media said it was terminal prostate cancer in 2018 and he passed away this week
7:09 PM Pat Martin to Everyone: I heard he had mets to his bones when Dxed
7:09 PM John Garbin to Everyone: thanks
7:11 PM Michelle G to Everyone: Someone had said that immunotherapy is good only if you have certain biomarkers, so I was just repeating that word
7:11 PM Carl Forman to Everyone: William Hurt was stage 4 with bone metastisis
7:12 PM: Michelle G to Everyone: William Hurt didn’t want to do traditional chemo. He did something called SEF chemo–side effect free. SEF chemo has not been peer reviewed
7:13 PM Len Sierra to Everyone: Guess it didn’t work, Michelle. : (
7:13 PM Michelle G to Everyone: Exactly
7:15 PM Michelle G to Everyone: We have to go. Thanks everyone
7:26 PM John Garbin to Everyone: Thanks Guys..have to go to meeting…Ciao
7:50 PM George Rovder Arlington VA to Everyone: Thank you Len, all Organizers, and all friends.
7:51 PM Ben Nathanson to Everyone: Thank you, George
7:53 PM Frank Fabish – Ohio to Everyone: Got to go guys.
