Caregivers Moderator, Renata Louwers, Tells of Rewards Working with AnCan

Caregivers Moderator, Renata Louwers, Tells of Rewards Working with AnCan

One of our earliest, and certainly most enduring, non-prostate cancer moderators has been nationally recognized caregiver advocate, Renata Louwers. In barely 12 months, if that, Renata lost her first husband, Ahmad, to bladder cancer back in 2014. Since that time she has tirelessly campaigned to establish the Caregiver perspective on the medical radar; not to mention all the fundraising she has done for BCAN and bladder cancer …. G-d Bless Her!

This past week Health Union published the second part of an article Renata wrote for their Bladder Cancer Page – both parts are linked below. And no, they are not specifically about bladder cancer but more about her experience of being a peer moderator for a videochat virtual group that AnCan runs for Advanced Cancer Caregivers.

Pt 1 – https://bladdercancer.net/caregiver/online-support-ancan/

Pt 2 https://bladdercancer.net/caregiver/volunteer-moderating-support/

The easiest way to find more of Renata’s articles …. and there are so many excellent ones, especially for The Philadelphia Inquirer, is to google ‘Renata Louwers, medical journalist‘; do it and you’ll have no regrets!

AnCan’s heartbeat thrives on helping peers; it races when our Volunteers, our lifeblood, find satisfaction in the work they perform for us at AnCan. We love our volunteers; we especially love you, Renata   xox

To receive reminders for our Advanced Cancer Caregivers Group,  or any others that are all free & drop-in, click here.

Another excellent Genomic/Genetic primer ……

Another excellent Genomic/Genetic primer ……

Just a little over a year ago, our beloved gene expert and Board Member, Professor Bill Burhans, delivered a webinar we called Cancer Genetics 101.  While Professor Bill is sadly no longer with us, two other good AnCan friends, Dr. Eli Van Allen and Dr. Corrie Painter Ph.D delivered their equally good take on the same content late last month sponsored by Cancer Research Institute, the historical research home of immunotherapy.

I have to admit, many of the questions were way more sophisticated than we produced. And in their inimitable fashions, both Eli and Corrie dumbed down teh answers to make them very intelligible for the many – but not all – lay particpants.

This webinar is definitley worth bookmarking for future reference.

O&U, rd

In the Tree, I See Myself   ….. a man’s video essay!

In the Tree, I See Myself ….. a man’s video essay!

 

Trevor Maxwell is a remarkable man. A young colorectal cancer survivor, he and Joe Bullock, another colorectal cancer survior, have formed Man Up To Cancer. This is a safe and suportive space for male surviors to speak about their condition.

Trevor comes to AnCan via our good friend at Inspire, John Novack, and also through our prostate cancer participant, Russ Smith who is active in Man Up To Cancer. Trevor’s recent video essay on situation is touching and piercing at the same time. Here is what he writes:

6.24.20

“When the storm of cancer hits, you need protection. Something to shield and strengthen you. My shield is an oak tree.”

This short film on YouTube (4 min) was produced and edited by my talented friend, Roger McCord. With stunning footage taken from ground level and from high above the coastline, the film captures the heartache and hope of my cancer journey.

With love from Maine,

Trevor

www.manuptocancer.com

AnCan is exploring how we can colaborate more closely with Man Up To Cancer.

Palliative Care Is About Maximising QoL

Palliative Care Is About Maximising QoL

AnCan is a huge proponent of inclkuding palliative care in your treatment plan and medical team!!

Palliative care is NOT about hospice or end-of-life ….. that is just a sub-set of palliative medicine. At AnCan we prefer to call it Symptom Management, the lingo used by UCSF. That is no coincidence as AnCan has an excellent longstanding relationship with the UCSF service. Dr. B.J. Miller is on our Advisory Board, and Dr.Mike Rabow, the Director of Symptom Management Service at UCSF, is a friend of the family too.

Last Friday, Dr. Rabow gave an excellent webinar on CureTalks titled Redefining Palliative Care – you can listen here. For those living with advanced cancer, auditing this webinar is a MUST in our view!

Another excellent Genomic/Genetic primer ……

Another anti-COVID19 “wonder drug” familiar to advanced Prostate Cancer & Chemotherapy Patients!

More good news to offset the difficulties of advanced cancer treatment!

If you have been paying attention, you will have noted that ADT (androgen deprivation therapy) drugs may protect against COVID19. A certain male protein, TMPRSS2, acts as a door handle for the virus to enter the lungs. ADT drugs suppress TMPRSS, and the LHRH antagonist, degarelix (Firmagon) has been shown to be very effective in controlling the virus in an Italian trial and is now being tested here in the US through the VA System; Prostate Cancer Foundation has sponsored both trials. Here are a couple of links to enlighten you:

Now the BBC is reporting this morning that dexamethasone may be a “lifesaving” COVID19 drug. Dexamethasone is a steroid, frequently used around the time of infusion for intravenous infused chemotherapy. In the UK RECOVERY Trial it has been shown to perform as a very effective agent to control the immune system, hence the aggression of the COVID19 virus. AND its inexpensive and readily available!

So if you are anything like our intrepid AnCan Board Chair, Peter Kafka, and currently on ADT and chemo, you may be very well protected against COVID19.

Another excellent Genomic/Genetic primer ……

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.”