AnCan’s founder, Rick Davis, innovated virtual peer-led support groups back in 2010. He recognized the potential of peer advice as the best information a patient could find. AnCan’s 2021 research confirms what Rick knew intuitively.
Neuroscientist Herb Geller PhD, the abstract’s lead author, highlighted the following key research findings,
“Our research indicates that peer-led groups don’t just improve quality of life around the things we can control like diet, exercise and stress. Eighty percent of our participants feel the groups make them better advocates for themselves, and well over 60% take information gleaned back to their healthcare teams.”
While this poster is featured in the Advanced Prostate Cancer track on Feb 17, AnCan is proud of its work to establish the stature of the low risk Active Surveillance (AS) protocol and includes its AS findings.
Co-author and nationally recognized AS Advocate, Howard Wolinsky, said:
“Sixty eight percent of our AS participants told us the Groups made them better advocates and 27% reported lower levels of anxiety – that’s a major difference. Active surveillance is the Rodney Dangerfield of prostate cancer – including our study at GU ASCO recognizes AS patients”
Rick Davis, founder of AnCan and a prostate cancer survivor, says the research demonstrates the power of patient communities on outcomes:
“I realized the power of peer-led support groups from my own treatment. Bringing them to a virtual platform 10 years before anyone had ever heard of COVID-19 and Zoom meetings, made peer support available to those compromised by geographical, physical and social issues. Recognition by GU ASCO is a big step in legitimizing AnCan’s work for all peer-led support.”
AnCan will remember our beloved Moderator, Tech Guru, FB Manager and buddy, Jake Hannam on Feb 20 @ 6pm EST. All are welcome – drop-in. NB It will be on Zoom not our virtual rooms – Zoom link: https://zoom.us/j/6516459299
Next week’s meeting will be on Tue, Feb 15. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights! 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/
Editor’s Pick: Conflict of Interest …. we are all too familiar with community docs with another agenda. But what about Center of Excellence practitioners who push to fill their trials? (rd)
Topics Discussed
Disease recurs some 10 yrs after PBRT Tx; IHT and heart issues; drug insurance appeals by your doc; general med onc reacts too slowly; clinical trial conflict of interest; ABC man caves to chemo; PSMA scans and concordance w. FDG; 3000 PSA at Dx and still undetectible; statins make a difference; once finally found, RT nukes the spot.
Chat Log
Larry Fish (to Everyone): 6:31 PM: who tells him this – what a dummy doctor
Alan Moskowitz (to Everyone): 6:38 PM: Is Embr covered by Medicare? Or is it still in clinical trial?
James Barnes (to Everyone): 6:41 PM: I received a Embr for Xmas and I am now a fan!
Len Sierra (to Everyone): 6:46 PM: Alan, as far as I can tell, it is not covered by Medicare, but one of the many guys in our group who has one should answer this question for you!
Jeff Marchi (to Everyone): 6:53 PM: I have 2 Embr devices and have gone from 8+ hot flashes a day to 0 or 1 a day
Len Sierra (to Everyone): 6:54 PM: Jeff, does Medicare cover it?
Jeff Marchi (to Everyone): 6:54 PM: not as far as I know
Alan Moskowitz (to Everyone): 6:56 PM: Jeff, thank you.
George Rovder, Arlington VA (to Everyone): 7:09 PM: Dr. Paul Leger, GU Medical Oncologist at Georgetown Lombardi Center of Excellence is solid.
Mike (to Everyone): 7:14 PM: Thank you
Ted Healy- Portland, OR. (to Everyone): 7:14 PM: Could Peter’s insurance cancel his policy if they did not approve the meds?
AnCan Herb (to Everyone): 7:24 PM: People are suggesting Germany for lutetium and I am certainly aware of it. Howard Scher says he has set people there. And the cost is not prohibitive.
Len Sierra (to Organizer(s) Only): 7:27 PM: Herb, before you do that, get a PSMA scan and an FDG scan here in the U.S. to see if you are a good candidate for Lu-177. Technetium 99M
AnCan – rick (to Organizer(s) Only): 7:29 PM: We’ve been trying to get him to Elizabeth Guancial for 12 months.
Len Sierra (to Organizer(s) Only): 7:31 PM: Rick, unfortunately, she has moved away from GU for men over to GU oncology for women. She wanted to set me up with a new PA so I went to Dr. Oh via Telehealth. I hate to lose her. I thought she was super.
AnCan – rick (to russell hoover hudson florida): 7:37 PM: Russ – Guancial no longer seeing GU men; only GU women. Len just told me. Focus on Moffitt
Jim Greenfield (to Everyone): 7:46 PM: Thanks George! Wasn’t she great?
Frank Fabish (to Everyone): 7:46 PM: Got to go. Goodnight.
John Birch (to Everyone): 7:55 PM: Thanks everyone, need to go. Keep fighting!
Want to make 2022 the best year of your sex life? We’ve got the webinar for you in “Cancer, Chronic Illness, and Intimacy”.
From pleasure with a partner, or just riding solo, nothing is off limits in this webinar featuring sexual medicine rockstar , Dr. Rachel Rubin.
Featuring a panel of patients Dion (lupus), Jimmy (prostate cancer), Kim (multiple sclerosis), and Michael (testicular cancer), and questions from the audience, you’re sure to find answers to your own questions.
The AnCan team thanks Dr. John Antonucci for submitting his opinions on hospice and palliative care in end-of-life considerations. Dr. John is a retired clinical, academic and research psychiatrist. His most recent gig before hanging up the white coat was at the VA providing care in the addiction clinics. He is also a peer in our High Risk/Recurrent/Advanced Prostate Cancer Group.
Our discussion group (High Risk/Advance Prostate Cancer) hasn’t talked much about end-of-life care or making decisions about things like resuscitation status, stopping treatment or hospice care. But the topic has come up lately, and since we have Dr. BJ Miller, co-author of a relevant book and a palliative care physician, on the AnCan Advisory Board, it is appropriate to take a first or second look at his chapter.
The authors start by defining these often-confused terms: Hospice provides end-of-life care with the goal of comfort rather than trying to cure a disease. It is actually a sub-section of palliative care. Palliative care is treatments added-on to regular medical care, at any stage of serious illness, and is intended to improve the quality of our physical, spiritual and emotional lives.
The authors explain what qualifies a patient for Hospice care. Anyone who has a terminal illness and is ready to stop treatment aimed at curing it, and who is expected to live 6 months or less, may qualify. A multidisciplinary team is then assigned and the treatments are brought to us, in our own homes if desired. (There are also residential hospices but these are not as common as often assumed.) Health insurance policies, including Medicare, cover Hospice. There are useful tips in the book on finding and choosing Hospice providers, and a section for when the hospice is not performing well. The authors encourage us to not to wait until our last few weeks to get this process going.
Palliative care is now its own medical specialty. Again, the idea is to make our lives nicer by helping to reduce a wide variety of suffering, including pain, anxiety, drug side effects, depression, fear, nausea, and spiritual pain. Most of this type of care is delivered in the hospital or outpatient clinic. Palliative care is integrated into our existing treatment plan, rather than being comprehensive like Hospice. Health insurance will generally cover these services although it might leave us with co-pays and deductibles. And again, the authors urge us to start early; there is no requirement that we be close to the end, only that we have a serious illness.
The overall effect on me of reading this chapter was not only education but also reassurance. Not only reassurance that we deserve comfort and don’t have to hide our suffering, but also that Someone will be there to care about our suffering and try to help. Quite comforting, I believe.
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).
Many of you will recognize Jake from the picture above, lying on his bed participating in our virtual meetings. This was largely Jake’s world – literally! I want to fill you in between the lines as to why AnCan and The Reluctant Brotherhood were Jake’s window to the world for the past 8 or 9 years. Jake was intensely agoraphobic – a fear of open spaces. He made no secret of this if you knew him, and occasionally mentioned it publicly in our virtual support groups. Jake was private but not in the least ashamed of his phobia.
For me personally Jake pesonified why I started this virtual endeavor 10 years pre-Covid. I recognized many people could not attend a real location – not only for physical or geographical reasons, but because they had a social disability … like, for example, agoraphobia.
In Jake’s case this was not recent. His wife, Paula, told me it was present when they dated and discussed having kids. She made it clear she wanted these future Hannams to visit the ocean and Disneyland; Jake made it clear those trips would need to be with just their mom. Jake was catholic – he held great relligious faith. So much so, that Jake told me on several occasions that his fear of death was subsumed by his fear of venturing outside his safe zone – and that safe zone shrunk the older he got. He preferred to stay at home on Xmas and Thanksgiving waiting for Paula to bring home leftovers, rather than take the 20 minute ride to his older son, JP’s house. His fear severely compromised Jake’s ability to seek the best treatment for his advanced disease. Because we loved Jake so, it frustrated many of us that a 40 minute drive to Johns Hopkins was never an option; he had to settle for mediocre local care.
I supported Jake from around 2013 (I think) when his cryotherapy failed. He was part of the Inspire UsTOO prostate cancer written forum, then started attending our Reluctant Brotherhood virtual telephone conference calls. Jake and I had our differences over the years. Unlike some of his AnCan brothers, I was smart enough to avoid politics, so Jake and I largely disagreed over treatment choices,and occasonally how I ran AnCan. That said, he never failed to support our effort, even updating a video introduction to AnCan as recently as early December that you can watch here.
Jake was our tech and social media guru. He figured out how to get AnCan on YouTube, Facebook and Twitter, He managed those sites for us, often posting content he sourced. Jake figured out how to record and publish our meetings; and, he was the first to volunteer to learn GoToWebinar to run our webinars. And many of our volunteers came to know Jake through being trained by him on these platforms. If you watched the screen when Mr. H was participating, his icon would go dark every so often for a minute or so. Most of us insiders knew that was Jake having a puff on one of his beloved cigarettes that he never gave up to his dying day. We all loved Jake dearly, even if it was not always kumbaya; he could be grumpy even irascible at times. Jake always discounted his own extensive knowledge about prostate cancer, and chose to be our behind the scenes moderator, making sure the meeting flowed well technically and muting any noisy interlopers..
Jake leaves his wife Paula, and JP and Phil, his two married, super smart boys with PhDs, one of whom travels the world for the World Bank. His first grandchild is expected next month. Jake was immensely proud of both of them, For details of Jake’s family, education and career, you can read his obituary here ; we thank Geoge Rovder for forwarding this to us.
AnCan and The Reluctant Brotherhood plan a joint virtual tribute to Jake Hannam on Sunday, Feb 20 at 6.00 pm Eastern. It will be on the RelBros Zoom platform not ours; we’ll publish a flyer in upcoming Reminders. Our sincere thanks to Peter Kafka and John Tesiberg for arranging this. This is my eulogy, so I doubt I wil take more time on Feb 20th.
And one last, very recent reminiscence to close that expresses a lot. I share this in Phil’s words from an email sent last Saturday, Jan 29, two days before Jake left us:
This is Phil (Jake’s younger son). Dad has been sleeping most of the day owing to the pain medication and hasn’t been able to use the computer since around Jan.14. He is declining more with each day. I offered to read his email today, and in reply to yours, he smiled and said “Onward and Upward” (the most he has said all day!).
Sincere thanks to you and my Dad’s other brothers at AnCan. We will keep you posted.
May Jake’s memory always be a blessing to us at AnCan Foundation and all who knew him.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 1, 2022 – Audio Only!
This is a audio only recording of the Hi-Risk/Recurrent/Advanced PCa Men & Caregivers meeting held on 2/1/2022. Apologies for this, however it was beyond our control as GoTo made changes to their platform and did not advise us. It’s also the reason the recording is posted so late ….. we couldn’t find it – literally!
The next Tuesday meeting will be on Tue, Feb 15. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights!
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/ To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: MDA refuses treatment because patient finds himself in trial control arm. Is this ethical? And we talk SUGAR (rd)
Topics Discussed
At 94 yrs old, next treatment step -toxicity considerations; low dose abiraterone; prednisone vs dexamethasone; Carl’s trial officially fails so what next – treatment decision by committee may not be best; spot RT after trial places gent in control arm & MDA refuses RT; Parkinson’s may impact treatment choices; chromgranin as a marker; LDH as a marker; selecting next treatment; let’s talk SUGAR; Lu177 PSMA brings success for some and delays for others
Chat Log
Carl Forman (to Everyone): 4:13 PM: So so sorry to hear about Jake, a dear friend to every one of us. May he rest in peace.
Peter Monaco (to Everyone): 4:17 PM: A really good guy. Gonna miss him for sure.
Rick Davis (to Everyone): 4:28 PM: Dr. Eleni Efstathiou ……
Jim Ward (to Everyone): 4:29 PM: Was Dr. E previously at M.D. Anderson?
Len Sierra (Private): 4:35 PM: That’s an old bio sketch, Rick. Says she’s being mentored by Logothetis as a young investigator.
Rick Davis (to Len Sierra): 4:38 PM: Everything on her is old, Len; she’s only been at Houston Methodist 3 months. Logothetis was her boss at MDA.
David Muslin (to Everyone): 4:46 PM: I got bitten up by no-seuums and have had a bad allergic reactions. Anybody on ADT experience anything similar?
Joe Gallo (to Organizer(s) Only): 4:49 PM: In addition to Orgovyx. 5 mg prednizone. I take 1000 Abi. Empty stomach (nothing 2hrs prior) Nothing to eat for 1 hr after.
Len Sierra (to Everyone): 4:49 PM: Caveat: This study was done in patients who were mCRPC. Tumor responses improved following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264443/
Steven Nordstrom (to Everyone): 4:52 PM: Thanks, Len.
Cal Van Zee (Private): 4:59 PM: was Carl’s trial PSMA-Lu?
Rick Davis (to Cal Van Zee): 5:09 PM: No – one shot of Actium PSA then Pembro + enz
Julian Morales-Houston (to Everyone): 5:13 PM: Eleni Efstathiou, MD 6445 Main Street Floor 24 Houston Methodist Oncology Partners (713) 441-9948 I have a follow up with Dr E on thursday
Rick Davis (to Everyone): 5:15 PM: dexamethasone
Jim Ward (to Everyone): 5:18 PM: I need to hop off early, gents. Thanks, and good night!
Rick Davis (to Everyone): 5:21 PM: FYI everyone – Herb is an expert in neurobiology!
Len Sierra (to Everyone): 5:30 PM: Chromogranin
John Vandenberg (to Everyone): 5:31 PM: Thanks for the informative discussion. Have to drop off now, good night to all.
Len Sierra (to Everyone): 5:32 PM: Another biomarker for Neuroendocrine disease is neuron-specific enolase (NSE)
Ben Nathanson (to Everyone): 5:37 PM: Neuroendocrine isn’t associated with high PSA, though
Len Sierra (to Everyone): 5:40 PM: You’re right, Ben.
Bill Bradford (Private): 5:46 PM: Thanks for the challenges / food for thought Rick. I am going to try and get a consult with Dr. E asap before making a decision on discontinuing ADT. I do feel like I am getting conflicting information and really need a strong QB
Stephen Saft (to Everyone): 5:49 PM: My PSA was 2.5 at diagnosis with Gleason 9. My PSA is relatively high now. hovering between 127 and 140 since september. Point is it acts strange all the time, so I would like to figure out why.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 25, 2022
We’ll start by talking about NEXT week!!!
The schedule is a little strange …., Monday Jan 31, AnCan welcomes Dr. Rachel Rubin answering Jimmy G’s questions during an intimacy/sexual dysfunction webinar. It’s free but you’ll need to register at: https://register.gotowebinar.com/regi…
… AND our meeting will be on Tuesday, Feb 1 @ 6 pm Eastern . That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights!
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/
Editor’s Pick: how long should you stay on HT prescribed as adjuvant to radiation? This is controversial and tricky – not just your disease risk but own preferences come into play (rd)
Topics Discussed
Likely denovo Mx gent seeks guidance; how long should you stay on adjuvant HT; more on morphing; getting Provenge; TP53, PTEN and RB1 mutations; be sure to ask for NGS test results when your doc orders; enz + pembro fails; taxane and platinum based chemo; Radium223 as an option; Dr. A steps up to help; spot radiation; how well will PSMA curative Tx work?
Chat Log
John Ivory (to Everyone): 4:07 PM: PUBLIC SERVICE ANNOUNCEMENT: What would you do if you found out that you had a rare, chronic disease that affects your skin and weakens your muscles? Lisa Sniderman chose to integrate her disease into her writing and performing. Join Rick Davis as he hosts Solo Arts Heal tomorrow evening at 10:30 ET/7:30 PT https://ancan.org/solo-arts-heal/
George Rovder, Arlington VA (to Everyone): 4:19 PM: Genito-Urologic (GU ) Medical Oncologist.
John Ivory (to Everyone): 4:19 PM: Who is he seeing at UChicago?
Joe Gallo (to Organizer(s) Only): 4:31 PM: He should be careful that an administrator puts him far out on schedule
George Rovder, Arlington VA (to Everyone): 4:33 PM: PSMA Scan
Joe Gallo (to Organizer(s) Only): 4:33 PM: PSMA PET
George Rovder, Arlington VA (to Everyone): 4:33 PM: Gallium 68 or Pylarify,
Joe Gallo (to Everyone): 4:34 PM: PSMA PET
John Ivory (to Everyone): 4:35 PM: UChicago Stadler, Szmulewitz
Len Sierra (to Everyone): 4:36 PM: Dr. Russell Szmulewitz, (U Chicago)
John Ivory (to Everyone): 4:36 PM: Or at Northwestern, Vanderwheele. I’ve seen both Smulewitz and Vanderwheele–both are great docs
Larry Fish (to Everyone): 4:38 PM: I think too much detailed info – in general for new guys – focus on 3 main things to do – when guy taking complex notes will get lost later. Joe Gallo (to Everyone): 4:39 PM: cribriform intraductal
George Rovder, Arlington VA (to Everyone): 4:39 PM: Cribriform Intraductal
John Ivory (to Everyone): 4:39 PM: You can also watch the recording again on YouTube tomorrow, Tom M.
Chick Lindsay (to Everyone): 4:39 PM: Where find info on SBRT therapy, and does UMN-Mpls offer the SBRT radiation therapy?
Larry Fish (to Everyone): 4:41 PM: good to make sure guy gets 1,2,3, ABC , can’t handle too much at first – technically and emotionally…relistening may not emphasize what to do first, second and third and then do that – 1 get a good GU quarterback and see what he says, 2- get PSMA scan to find out what is going on where, 3- form a plan of action with MD , based on 1 and 2 and then “Take Action”. All the other stuff will follow …
Joe Gallo (to Everyone): 4:44 PM: Dr Mark Scholz. The Key to Prostate Cancer
Bruce Bocian (to Everyone): 5:03 PM: My PSA rose to .31 after RP 9 years ago, had a PSMA scan, nothing detected. Sought 3 opinions, all said HT not recommended under .5. I just finished Salvage Radiation, PSA dropped to .024, blew the doc away as he was expecting a smaller drop over a longer period.
Bob Smith (to Everyone): 5:57 PM: Given my rapid rise in PSA (14 to 44) in 40 days and the explosion in bone mets (approx 3-6 to about 25), am I taking excessive risk by delaying the Ra 223 while trying to get a timely ga 68 psma Pet which would require a trip to the mainland?
AnCan – rick (to Everyone): 5:58 PM: Bob …. You may be able to get an Axumin scan and maybe a Pyl scan on HI.
Mark Baldridge – Seattle (to Everyone): 5:58 PM: Is Lutetium 177 PSMA expected to be a game-changer in the future?
AnCan – rick (to Everyone): 5:59 PM: Mark … YES!
Peter Kafka – Ken Anderson (to Everyone): 6:03 PM: Pylarify is not available in Hawaii. I spoke to the company. Closest is California. Mot sure about Axumin. Might have to check their website – Blue Earth? I think.
Carl Forman (Private): 6:08 PM: I asked Tagawa about LU177, and he told me that it will not be a game changer as it will help some but not others
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
From surviving to thriving to grieving… Award-winning artist and playwright Aoede shared stories, music and films illustrated how creating music and art has been her lifeline during her 14-year journey battling a rare chronic illness.
Watch here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Jan 17, 2022
This was the second of our meetings where we reported on the PCF Retreat back in Oct/Nov. Session 2 can be heard at https://www.youtube.com/watch?v=eoFWeGbeGUA, and you can learn about everything from exercise to how your gut microbiomes may impact prostate cancer treatment.
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/
To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: Variant disease is much on my mind, and two of our guys who are likely variant, need help this week. (rd)
Topics Discussed
de novo MX currently under control; Dr. Morgental debunked; treatment controls PCa but not sciatica; cabazitaxel stabilizes disease at PSA of 120 – but is this the right Tx; just turned mCRPC so whats next for likely variant situation; abscopal effect; Provenge and 2nd line HT drugs; docetaxel as a long term option; choose a collaborative GU med onc as your QB; more Provenge – how important is tumor burden; is Quercetin something we need to know about?
Chat Log
Mark Perloe, MD Atlanta (to Everyone): 6:06 PM: Wanted to share that Northside Hospital in Atlanta has recently started Pylarify PET scans and has announced that they will have ViewRay MRI-LINAC
AnCan – rick (to Herb Geller): 6:24 PM: any abi or enz???
Peter Monaco (to Organizer(s) Only): 6:24 PM: Surprised he would get a drug holiday with bone mets present…
Robert McAleese (to Everyone): 6:43 PM: sorry I have to leave for a family emergency
AnCan – rick (to Len Sierra): 6:51 PM: Len – has cabazitaxel been shown to be non-inferior to docetaxel
Julian Morales-Houston (to Everyone): 7:03 PM: www.hopkinsconsults.org – Dr Epstein
Carlos Huerta (to Everyone): 7:04 PM: FYI, Mayo in Phoenix is now doing the PYL PET scan.
Stephen Saft (to Everyone): 7:05 PM: “Thanks for the link to Jonathan Epstein.
Len Sierra (Private): 7:06 PM: Not sure they were ever trialed Head to Head. But cabazi is only approved for 2nd line taxane where docetaxel failed. Of course, docs can prescribe off-label.
Joe Gallo (to Everyone): 7:07 PM: FYI also. Fox Chase CC in Phila is now enrolling for PSAM PET PYL
Carlos Huerta (to Everyone): 7:07 PM: I have to go. Thanks for the summaries.
Joe Gallo (to Everyone): 7:07 PM: PSMA 🙂
AnCan – rick (to Len Sierra): 7:08 PM: K …… I don’t think it is any less effective than docetaxel
Stephen Saft (to Everyone): 7:08 PM: Thanks to Joe Gallo. I knew what you meant.
Chick Lindsay (to Everyone): 7:12 PM: I need to leave tonight’s meeting. Thank you for making the time for me tonight. Thanks for the presentations, and the updates. Chick
Frank Fabish (to Everyone): 7:17 PM: Guys got to leave. This sciatica is killing me.
Len Sierra (to Everyone): 7:21 PM: https://pubmed.ncbi.nlm.nih.gov/33451978/ This is a Phase 2 study of Provenge with or without Xofigo in mCRPC. Conclusion was that the combo was superior to Provenge alone. Bonus finding: PSA50 decline was seen in 31% of patients vs. 0% in monotherapy.
Stephen Saft (to Everyone): 7:48 PM: I am going to say thank you and good night.
Gregg (to Everyone): 7:49 PM: Thanks much everyone. Have to leave. Gregg Nolting.
Michael Chandler (to Everyone): 7:53 PM: Thank you all, best health.
Len Sierra (Private): 7:54 PM: Seems to be in-vitro studies only, but is interesting. Not in the clinic.
Herb Geller (to Everyone): 7:55 PM: Those papers are not from NIH. They are from research groups in China and Atlanta. They are very basic science papers. Quercetin has been the subject of investigation for some time.
Mike Phillips & Tomi (to Everyone): 7:55 PM: Thank you!
Cal Van Zee (to Everyone): 7:56 PM: logging off now. Positive throughts to everyone.
What do oncologists have against palliative care ….?
If you regularly attend AnCan’s virtual chat support groups, you are sure to know that whatever the condition, we frequently recommend palliative care … almost anytime and place we can.
And NO – palliative care is not about dying – it’s about preserving Quality of Life. Some of the smarter institutions have figured that changing the name to an acronym like Symptom Management Service at UCSF or Supportive Care at Memorial Sloan Kettering may account for greater acceptance and higher quality. It may also explain why these two institutions are among the best in the biz. Others like City of Hope, that still keep Palliative in their name, struggle to make palliative care easily available to their patients.
A recent article in Hospice News reports that “Cancer Patients Often Not Referred to Palliative, Mental Health Care”. Amongst 240 surveyed oncologists, only 17% referred their patients to palliative care early in the disease process. Yet many studies show that the earlier a patient is referred to palliative care, the better the outcome – especially for cancer. On more than one occasion at the same NCCN hospital, AnCan has had to navigate a participant to self refer to palliative care in order to receive treatment. In one instance, this even involved the Chief Medical Oncologist.
Given the underpinning principle in medical ethics of ‘Do No Harm’, essentially embodied in the Hippocratic Oath, how can this be?
At AnCan, we have a theory, we see this as a control issue. For some oncologists, and maybe other specialties who might collaborate with palliative care too, they are uncomfortable sharing patient management with other docs in essential areas like palliating comorbidities. While palliative care physicians are required to stay up on developments in pain treatment, antiemetic (nausea) drugs, and other forms of supportive care, oncologists have their heads buried in cancer care.
AnCan is very fortunate to have Dr. BJ Miller, one of the foremost palliative care gurus in the US, on our Advisory Board. If you doubt that, BJ’s TED Talk is now up to 14.6 million views! Dr.Miller now practices his profession from his own organization, Mettle Health; his services have comforted several AnCan participants. So we thought we would ask Dr. BJ Miller for his view on an issue he has lived with for many years …..
” I think medical training is part of the problem, as is confusing messaging around what is palliative care. and i agree that a piece of the problem is related to control, and, related, misunderstandings about how palliative care works (ie, as an additional layer of support that makes the treating physician’s life easier as well as his patients’; not a service that will steal your patient away or somehow undermine your authority).
and then there’s the culture of medicine, where death is the enemy and suffering is just part of the cost of doing business; and where medical issues are taught as separate from the psychosocial and spiritual issues a patient faces.
lastly, medicine generally does not include the caregiver/family in the equation, where much of the suffering happens.” …….. Tx BJ!
Sharing patient management may not come naturally to many physicians, especially if not part of their institutional culture. At AnCan we say, let the doctor most specialized in each aspect of care take responsibility for it on behalf of the patient. When inappropriate doctors stand in the way, the patient suffers.
Of course, AnCan is a patient driven organization ….. we welcome a response from other docs to explain what we are missing!
I rarely write in the first person. I make an exception today to eulogize Jake Hannam z”l (the Jewish equivalent of RIP).