Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – June 1, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – June 1, 2020

Editor’s Pick: PRINT trial examines small cell/NE morphing … not to mention EXERCISE beats fatigue! (rd)

Topics Discussed

DeNovo Metastatic man enters trial for HPN424; yet more monotherapy bicalutamide – after 17 yrs of no treatment!; FMI finds ROS1 – what next; introducing palliative care; bone cancer pain or arthritis; PRINT trial looks to thwart PCa cells morphing to small cell/NE; clinical trials still shut down nationally; to radiate or not with 5 lesions?; Procrit?; another denovo Mx man asks should he do chemo?; EXERCISE WORKS to relieve fatigue from salvage RT!!!; remedies for hot sweats.

Chat Log

Jake (to Everyone): 5:19 PM: HPN424

Jake (to Everyone): 5:20 PM: https://www.biospace.com/article/releases/harpoon-therapeutics-announces-preliminary-safety-and-pharmacology-data-from-its-hpn424-phase-1-trial-in-prostate-cancer/

Rich Jackson (to Organizer(s) Only): 6:22 PM: About rhPSMA rhPSMA-7.3 (18F) consists of a radiohybrid Prostate-Specific Membrane Antigen (PSMA)-targeted receptor ligand which attaches to and is internalized by prostate cancer cells, and is labeled with the 18F radioisotope for PET imaging. Single intravenous administration of rhPSMA-7.3 (18F) for PET Scan

Dennis Correia (to Everyone): 6:32 PM: nct#02903160 (PRINT Trial)

Larry Fish (to Everyone): 7:05 PM: MMR mismatch repair deficiency

AnCan – Rick (to Everyone): 7:15 PM: https://www.urotoday.com/video-lectures/mcrpc-treatment/video/mediaitem/843-embedded-media2017-10-09-16-50-00.html?utm_source=newsletter_4869&utm_medium=email&utm_campaign=navigating-the-course-of-treatment-new-findings-meet-old-habits-findings-from-latitude

Palliative Care Meets Telehealth!

Palliative Care Meets Telehealth!

Regulars to our Advanced Prostate Cancer Virtual Support Group know the value AnCan places on the importance of palliative care, and having a palliative doc on your treating team. And NO – paliiative care is NOT the same as hospice; it is not end of life, nor anywhere near it. What it is, is the best way to treat comorbiditiies or what commonfolk call side effects. And it can be a lot more than that – like help dealing with mental health and social challenges surrounbding serious and chronic disease.

Just last night, our Advanced Cancer Caregivers Virtual Support Group was faced with an overwhelming issue that our moderators felt could be cut down to size with the help of a paliiative care or symptom management service, perhaps with telehealth involved in this current environment. Then today as if on demand, Medpage Today published this article! Since readers are required to register for Medpage Today, albeit free, it is reprinted below.

AnCan is proud to have Dr. B.J. Miller on our Advisory Board. BJ is a colleague of Dr. Mike Rabow, a friend of ours too, who is named in the article. If you want to learn a little more about palliative medicine and enjoy a wonderful TED Talk viewed by more than 10 million, watch BJ here!

 

Palliative Care Takes to Telemedicine in COVID Crisis

— Specialty built on personal contact finds telemedicine a boon to their profession

A female healthcare worker helps a bed ridden elderly female patient use a tablet

Before COVID-19, Mollie Biewald, MD, was skeptical about using telemedicine for palliative care visits. But now, she has found herself holding iPads or iPhones at the patient bedside, helping families make difficult decisions.

Over the past few weeks, some of her patients — whether hospitalized for COVID or another disease — have received daily family visits via Zoom or FaceTime. When a patient is actively dying, with the family present remotely, Biewald or another clinician will often stay at the bedside, holding the device.

“It is amazing,” said Biewald, a palliative care physician at Mount Sinai Hospital in New York City. “We mostly use it to bring the family to the bedsides of patients who are otherwise totally separated from everyone they know.”

While she initially thought it would be “nothing like the real thing,” she has changed her mind, as it has enabled family members to see their loved one and be present virtually while the patient is dying.

“It’s not ideal, but the best we can do, and much better than the alternative,” Biewald told MedPage Today.

Other palliative care teams across the country similarly have taken to telemedicine to conduct advance care planning and goals-of-care conversations with patients without having to enter their hospital room or increase the number of personal contacts by providers. Professional volunteers from around the country have also helped with palliative care consults and virtual office hours in support of providers in New York City.

More than other medical specialties, palliative care is built on personal contact, conversation, and relationship-building — supporting patients and families to clarify their values and define their treatment preferences in the face of serious illness, whether they are in the hospital or the community.

Michael Rabow, MD, of the University of California San Francisco, heads a busy outpatient palliative care clinic that was an early adopter of telemedicine, providing about half of its visits remotely.

“After this crisis ends, whatever new normal looks like, the numbers for tele-visits may go down, but not to where they were before,” Rabow said. “I think a lot of providers have recognized that telemedicine can work in palliative care, but the ideal balance between remote and in-person visits is not yet known.”

Palliative care professionals in some cases could be brought in virtually to assist other clinicians in discussions about whether a COVID patient with comorbidities whose condition is getting worse would want to go on a ventilator, given the poor outcomes. Might they consider the alternative of dying without the vent, perhaps in a private hospital room or at home, supported by hospice care?

“The biggest benefits of palliative care consultations are further upstream, when people can consider in advance what would be important to them in a situation like that,” Rabow said. If they understand the ramifications and don’t want to die of COVID in the hospital, alone and on a ventilator, then they may want to express other choices now, through an advance directive.

For Michael Fratkin, MD, founder and CEO of ResolutionCare Network, a community palliative care service headquartered in Eureka, California, telemedicine is not only essential to delivering palliative care services to seriously ill patients in the current crisis, he thinks it provides a better medium, in many cases, than in-person visits, given the nature of the conversations.

Prior to March 16, when California shut down in response to COVID-19, ResolutionCare Network was conducting 30% to 40% of its local patient encounters by video on a computer, iPad, or smart phone, and the rest in person. Since then, its team of four physicians, nurses, social workers, and a chaplain, mostly working from their own homes, has provided 100% of visits remotely to a caseload of 200 patients.

What happens in these virtual meetings with seriously ill patients and their caregivers? Trust building, goal setting, shared decision making, advance care planning, symptom management, and the identification of social determinants of health, caregiver adequacy, and available community resources, Fratkin said. What makes it better is the relational quality of the encounter.

“We haven’t had a single situation that required an exception to our no-home-visit policy,” he added. Some patients have been referred to their primary care physician, to urgent care, or to the hospital for more acute needs. Precautions are practiced even though Eureka to date has had few COVID-infected patients. “We are prepared to go to the home, dressed in personal protective equipment (PPE), but we just haven’t needed to.”

Satisfaction with this approach among staff, clients, and referral sources is almost universal, Fratkin said. “Even for the resisters. They got over it quickly.” Advantages include the pragmatic — such as reduced risk of exposure to the virus. People don’t have to get up, get dressed, drive to the doctor’s office, and sit in a crowded waiting room; staff don’t have to drive on back roads to the patient’s home, he said.

“And it prevents a feeling of ‘home invasion’ by our staff. Everything we wish to see in the home has to be shared by consent of the patient. It’s a more balanced power relationship, without giving up anything in terms of trust-building or the intimacy of the interaction.”

Most of the patients Fratkin’s company serves are Medicaid-covered, often buffeted by housing and food insecurities, substance abuse, mental health issues, and trauma-informed losses, he said. “Because of our experience in telemedicine, we are being asked to be part of conversations aimed at getting patients out of the hospital and keeping them out.”

“Telemedicine is providing insights into all the ways to improve healthcare,” Fratkin said. It took the virus to change the game. “This experience with COVID will take us past the tipping point, to where the public better understands what palliative care is all about.”

Palliative Care Meets Telehealth!

Physician conflict may not always best serve the patient

Editor’s Note: Some of our AnCan prostate cancer community have alrady seen this message, but we felt it was important enough to broad- rather than just narrowcast!

AnCan has recently noted a couple of examples where involving more rather than fewer doctors can be benifit the patient. However, doctors, advocates and others may disagree. Since AnCan believes that YOU, the patient, are your best advocate, we’ll leave it to you to decide.

The first example involves palliative care …. and NO, palliative care is NOT hospice. Listen to this 2′ video from Dr. Elizabeth Loggers at Seattle Cancer Care Alliance, one of the best cancer treatment facilities in the country …. she explains it much better than we ever could! Nonetheless, there is a reluctance by some medical oncologists to involve the palliative care service for their patients … even at a late stage. While some med oncs welcome the involvement of palliative care, others see them as meddling. We have seen examples to support this with different cancers and in different NCCN institutions, including those with the best palliative care services in the USA.

This concerns us greatly, because while the med oncs have expertise in addressing your cancer, they may not be experts in, and on top of, all the developments in pain and side effect management – like nausea, fatigue and more. And that’s why in some hospitals, Palliative Care is called ‘Symptom Management’ – for example Seattle Cancer Care and UCSF. It is not just a euphemism to dispel the association with hospice; it truly describes what the palliative specialty does. Some palliative websites boldy invite all cancer patients, no matter the stage, to consult with them!  A further benefit to adding a palliative care doc to your team is the value of having a readily available quick and dirty second opinion on treatments your med onc prescribes. Perhaps this is the source of concern for your medical oncologist, but frankly they need to get over it and work collaboratively with your paliiative care doctor.

Those who follow AnCan well know AnCan pushes involving a palliative physician early in the treatment path for a multiple of reasons. And we proudly  boast having one of the best palliative care doctors in America on our Advisory Board, Dr. B.J. Miller. For most NCCN/NCI institutions you do not need a referral – just make your own appointment. First try your quarterback doctor, but if they seem reluctant then advocate for yourself, force the issue and go direct.

The second example this week may apply more to prostate cancer than other oncological disorders, although maybe not! In most cases the diagnosis of cancer immediately involves a medical oncologist. For a few cancers, like prostate, a GU med onc (genitourinary medical  oncologist for those unfamiliar with the vernacular!) may not get involved until the disease has clearly metastasized; we see that as a mistake that does not serve the patient’s best interest. AnCan believes a GU med onc, and in fact any specialty med onc, should be included as soon as the treatment plan includes a systemic protocol. And why – because surgeons and radiation oncologistst are not trained in internal medicine and systemic treatment – that is to say any treatment that impacts the whole body like chemo- or hormone therapy. That requires expert knowledge of internal medicine.  Whle some may argue that med oncs only muddy the waters early in treatment, we disagree.

Palliative Care Meets Telehealth!

Viral ….. Dr. B.J. Millers thoughts on our current world-wide crisis!

Some of you already know one of the most remarkable members of our Advisory Board, palliative care doc,  B.J.Miller. If you don’t, then listen to his TED Talk along with 10.5 million others!!! We are all getting ample Covid19 e-mail …. but if you got a missive directly from Bill Gates, I bet you’d read it. 

Well today I received an e-mail from my buddy, B.J.s institute, The Center for Living and Dying. It contained his thoughts on the surreal crisis we all find ourselves in  – and for me it truly struck a chord. To put it in my Marxian (Brothers) terms … are you a man or a mouse??? Read B.J”s thoughts and reflect – btw, it was mailed off-center .. and personally I think that is just perfect!!

And in case you didn’t get my allegory, Bj’s thoughts fall into the same category as Bill Gates – at least for me! (rd)

 

dear folks,

here we are, struggling and about to struggle more. i hesitate to add to the pile of missives flying around the ether, but i do want to shout hello and maybe sound a subtler note with a few reminders. 

remember that, if we are in-tune and honest with ourselves, every one of us already knows vulnerability.  we may have hidden it away or covered it over with self-assuredness or fortune, etcetera, but underneath our colorful coats has always been a sensitive, naked, tender, affectable critter. anyone who’s been ill or injured or disabled, loves someone who has, or is simply a sensitive soul, knows this feeling well where nothing may be taken for granted.  the ground beneath us has never been as solid as we like to think it is.  in other words, on some base level, we are not in wholly foreign terrain.but this time, our covers are being pulled collectively and simultaneously.  that may be terrifying, and it’s also cause for hope.  us versus them doesn’t make sense anymore, if it ever did.  now, finally, we get to share the big common reality out in the open. we may be removed from one another, but we have never been less alone.

our humanity is being summoned, which means we will be seeing our real power. it’s soft and immense and adaptive and willing to get messy.  we will also see ugliness and selfishness, in ourselves and others, but I bet the farm our gnarls will be overwhelmed by our beauty.  though the cost will be hard to bear, we are about to learn so much.  it’s a matter of survival now, not in the abstract, and that’s when we humans get serious and come together.

we are all being reacquainted with life’s basics and the awesome power of nature, including human nature.  this goes for ourselves as well as for the systems we’ve invented – healthcare, government, economic.  all are being tested now, and so all have a shot at evolving.

it’s also worth reminding each other that “social distancing” – usually a problem and now the solution – only pertains to physical isolation.  we can still love each other.  we must.  we can still communicate over the airwaves.  we can still mean well by each other.  however you do it, keep ‘touch’ alive.  losing touch can result in losing empathy, and that would be one sure way to make a bad situation worse. instead, let the longing build; it will help stave off loneliness and nihilism, and it will keep us feeling.  those of us who have experienced compassion, whether coming from us or towards us, know that it’s always there.  it just needs to be called-up and exercised.  it needs an excuse to show itself, and suffering provides that excuse. one day, we’ll be able to directly share all that affection again, and you can bet it will be with heightened appreciation and passion.

from years of working with people who are dealing with the unimaginables of life, i can safely state that people are stronger than they tend to realize. we are. maybe it’s more accurate to say we are differently strong from the conventional, muscle-bound notions of strength. this bigger and suppler sleepy inner strength just needs a reason to flex. and here we are.

in love and grief and solidarity, XOb

 

 

 

 

Palliative Care Meets Telehealth!

CancerCare Workshops: March 16 – Apr 30

Leading Experts Discuss Important Cancer Topics
Make sure you’ve signed up for our upcoming Connect Education Workshops! These free workshops provide the latest cancer information straight from leading experts, via phone or online. At the end of the workshop, you’ll have a chance to ask the experts your own questions.
4/23    Update on Glioblastoma in Adults       
Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – June 1, 2020

High Risk/Recurrent/Advanced Prostate Cancer Virtual Group recording – 02/17/20

 

Topics discussed

Editor’s choice: Learn first hand about certain side effects from the immunotherapy drug, nivolumab (Opdivo). 

Pharmokinetics of Lupron – explained a little; side effects of immunotherapy anti-PD1 drug Opdivo; treating liver metastasis; getting palliative doc involved; durolutamide results; starting ADT froom scratch; monitoring G5+5 PCa after you come off LHRH; what to know when starting chemo; neuropathy and maybe how to prevent it from chemo

Chat Log

Russ Smith (to Everyone): 7:20 PM: Turns out I was given a script today for Casodex.

Ken Anderson (to Everyone): 7:22 PM: Russ

Ken Anderson (to Everyone): 7:22 PM: good to know!

AnCan Barniskis Room (to Everyone): 7:22 PM: Great Russ – false alarm

Russ Smith (to Everyone): 7:24 PM: Thats why I bring my wife to these meetings. She is my scribe.

Ken Anderson (Private): 7:27 PM: Great Non-profits requires you to log in and set up an account prior to posting.

AnCan Barniskis Room (to Everyone): 7:31 PM: Great Non-profits requires you to log in and set up an account prior to posting.

Russ Smith (to Everyone): 7:35 PM: Gotta run guys. Thanks for the advice. Be back soon.

richard wassersug (to Everyone): 7:36 PM: I have to leave now. My thanks to all of you for letting me join the group this evening.  Bye.