AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Leverage second opinions when in decision making mode (bj)
Topics Discussed
Following PSA levels after prostatectomy — how low, how fast, how often; understanding undetectable PSA following surgery; newly diagnosed seeks second opinion; active surveillance; getting the most out of in-person medical conferences; focal vs definitive treatment; germline (inherited mutation) testing and the Promise Study; Post radiation urinary issues — irritation and flow; managing symptoms of long covid during radiation treatment; importance of getting a second opinion from a prostate cancer center of excellence; attending PCRI conference — visit AnCan
Chat Log
Boykin Jordan (DC Metro)
A lot of fun!
Jerry Grimes, Brighton, MI
Oops, I had the wrong meeting! All the best, and I’ll show myself out… 😊
AnCan – rick
Trends in Active Surveillance for Men With Intermediate-Risk Prostate Cancer https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2822716
AnCan Barniskis Room
This Weds 7:30 pm PT Kelly Spillman a comedian who does a stand-up comedy routine about living with cancer will perform online at ANCAN Solo Arts Heal. Please share this if you know someone dealing with cancer. Kelly Spillman is a psychology professor, stand-up comedian and storyteller based in Los Angeles. Kelly has performed at The Comedy Store, The Improv and many comedy festivals around the country. She is currently touring her solo show I Blame Florida which is a humorous, hopeful show about her quest to beat her stage 4 colon cancer diagnosis. To Watch: Click On :https://themarsh.org/soloartsheal/ Scroll down to mid-page where you can click to view in Zoom or YouTube
AnCan – rick
Promise study https://www.prostatecancerpromise.org/?utm_campaign=ANCAN&utm_medium=link&utm_source=Webinar
AnCan – rick
Darryl – here’s our phone number to dial in 646 749 3129 #222 583 973
Jim Stewart Reno, NV
have to sign off to get grandkids, goodnight everyone
AnCan – rick
Is he new??
AnCan – rick
ancan.org
AnCan – rick
NCI Centers http://www.cancer.gov/research/nci-role/cancer-centers/find
AnCan – rick
NCCN http://www.nccn.org/members/network.aspx
Are you ready to get the inside scoop on clinical trials? Get ready to delve deep with former clinical trial nurse coordinator Marni Tierno. We know it can be a complex and overwhelming topic, but don’t worry – we’re here to break it down in a way that’s easy to understand.
Also featuring the vast professional experience of Wendy Garvin Mayo, we’ll tackle the myths and misconceptions that often surround clinical trials, giving you the facts and insights you need to make informed decisions.
Whether you’re a patient, carepartner, or simply curious about clinical trials, this webinar is for you! Our aim is to empower you with a deep understanding, allowing you to make the best choices for yourself or your loved ones.
Some of the topics we will cover include:
Description of the types and phases of clinical trials
Examples of pivotal clinical trials that have changed how we treat cancer
What to expect when participating in a clinical trial (including potential risks and benefits)
Addressing common questions about clinical trial participation
and more!
Watch here: (closed captioning is provided for this webinar, click the CC button at the bottom next to the gear.)
To view the slides from this webinar, please click here.
Special thanks to Bayer, Novartis, Johnson & Johnson, Foundation Medicine, Myriad Genetics, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
And very special thanks to Illumina and Collaborative Cancer Care for letting us have two of their absolute best people present for us!
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To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
Highlights of the top prostate cancer papers from the recent ASCO annual conference were presented by AnCan moderators in a special 75-minute session preceding the 7/1/2024 High Risk / Recurrent / Advanced prostate cancer meeting. Moderators Rick Davis, John Antonucci, Len Sierra, and Ben Nathanson spoke, followed by a 30-minute audience Q&A.
Topics we covered:
* Sequence your tumor before Pluvicto
* More tough news if you’ve got the bad mutations…
* With a BRCA mutatoin, get that PARP-I quickly!
* Readily available solution to hot flashes if you’re on abi
* State-of-the-art personalized medicine and imaging
* Cushioning the blows of ADT
* A flop for metformin
* Who should get treatment holidays?
* Is alpha radiation the top dog?
* Pressing AR’s self-destruct
* An angle on neuroendocrine
* Predicting winners at immunotherapy
* Who’ll connect at BAT?
* Doublet faceoff: ADT+ chemo vs ADT+ARPI
* In triplet trials, who really needed chemo?
* Ranking PARP inhibitors for bone-marrow complications
Editor’s Note: We know you’ve missed receiving email notifications about our blog posts. Now that we are up and running on the new system via mailchimp (the same system you receive our group reminders on), here are the posts may have missed. They are categorized for your connivence. Enjoy!
Hi-Risk/Recurrent/Advanced PCa Video Chat Recordings
Summarizing a webinar: Pet Aging, Illness, and Loss
Here at AnCan, we like to consider all aspects of our community’s livelihood. Whilst juggling our various illnesses with the demands of everyday life, some of us have the honor and privilege of sharing our lives with animals that love just as deeply as we do. Many have been there for us during the most difficult times of our lives. Through diagnosis, treatment, recovery, daily living, grief – you name it.
Trigger warning: Pet loss
I recently got the chance to listen to a webinar about grieving and end-of-life care for pets. This webinar, titled “Pet Aging, Illness, and Loss”, was hosted by Mettle Health. I’ll link it down below. Their guest speakers were veterinarian Mary Gardner & host BJ Miller. Mary Gardner specializes in end-of-life care for animals and euthanasia. It would seem to me that she also specializes in compassion; compassion for the pets she encounters and for their human caregivers.
I’m actually typing part of this blog post one-handed, as a newly rescued kitten purrs in one of my arms. We found her underneath a car just the other day. The life of an animal lover can leave our hearts so full. As cherished members of our families, pets provide love, comfort, and even health benefits – making their end-of-life care an equally crucial and compassionate endeavor.
I had to prepare myself for this one. Anyone who knows me or who’s taken a class with me will know how much my pets mean to me. And when you’ve had as many pets and emotional support animals as I have, you’ll know what it’s like to grieve them. It can be just as painful as losing a human loved one; and for me, the impact of the loss of a pet and the loss of a human are exactly the same.
Mary addresses an important question that doesn’t have a clear answer.
“How do I know when it’s ‘time’?”
They start by talking about the role of pets in our lives and how it’s changed over time. These days when people come to her for help, their pets have lived their lives in the lap of luxury, with all the pillows and modern comforts they could want. That’s an exaggeration, but you get the picture!
I remember a time when it was common for dogs to be chained up outside. Honestly, that’s still the case in some homes. Cats did, and still do, aimlessly roam the streets. The first dog I ever grew up with was named Jack. He was an absolutely sweet & protective German Shepherd mixed breed dog who lived his life often, but not always, chained to my grandparent’s front yard in the inner west side of San Antonio, TX. It was a different time, with a different attitude towards pets. I spent as much time outside with him as a 6-7-8-9-10-year-old could.
Working animals have their place, too, and no judgment at all for people whose animals/pets are working pets. The grand takeaway from this, however, is that no matter what, we still want them to have as happy and pain-free of a life as possible. It’s about compassion and care.
There are so many reasons to euthanize. Quality of life for the pet & caregiver fatigue are probably the biggest things to consider. Think about your “monetary budget, your physical budget, and your emotional budget”. I thought that was a great way to phrase it.
The entire point of euthanasia (and of this webinar) is to be able to minimize suffering, no matter their role in our lives. It’s a gift, really.
Quality of life
So, how can you tell if a pet is near its “time”? Gardner gives examples based on breed and ailment. Arthritis in big dogs, breathing problems, and more. Then she sprinkles in answers as to how she might assess the quality of life of this pet. She will go through a list of questions with clients that give her an idea of how to guide them. Consider this: How do they live? Is it living?
Sometimes their physical body is ready, but their mentality may not be. It can be hard to judge when it’s time because of that.
One thing Gardner stresses is that “It will always seem too soon until it’s too late”. Euthanasia is not about giving up. “It’s about ensuring that their goodbye is good.” Here’s something that hit home for me: if you know for sure it’s time, they’re usually really suffering.
When I heard that, I had flashbacks of moments where I regretted waiting too long. If only I’d had someone to tell me that the kindest thing to do would be to euthanize my pets before it was too much for them. My beloved Green Spotted Puffer fish, Puffy, comes to mind. I regret euthanizing when I did, and wish I’d proceeded sooner. I still feel a tinge of sadness every time I think about him. I’ve got to remember, though: he lived a very long, full life for a pufferfish in captivity. The happy, blissful days, far outweigh and outnumber that time in our lives. Hold on to those memories. Don’t put yourself down for feeling like you didn’t make the right call at the right time.
Quality of life continues to be a question that doesn’t have a clear answer. You’ve probably heard the reassurance, “Don’t worry, you’ll know when it’s time”. Well, actually, it isn’t that easy. You may even hear that sentence from veterinarians themselves. Unlike their human counterparts, veterinarians are typically not trained to have these end-of-life conversations. They may know the ins and outs of veterinary care, but they may be a little bit lacking in the palliative care and hospice departments. Of course, this doesn’t apply to all vets.
For Gardner, some people call her saying “We’ve had such a terrible week, I think it’s time”. Or, the opposite – “We had such an amazing week, I think it’s time”.
Caregivers
The webinar also talks about the role of caregivers. Human caregiving and animal caregiving have the very same symptoms. Anyone surprised? Not me. Gardner noticed this when she went to a conference about end-of-life care for humans. Caregivers for animals express the very same issues. It’s an emotional, physical, and monetary toll. This can be especially true for people in our AnCan community – those of us who are also living with cancer or chronic illnesses, or who are also caregivers to a beloved human.
I remember times when I declined to go out with friends on trips, or even a single night out when I had my rat, Pokka. Rats have a shockingly short lifespan, and this little rat and my pufferfish were my world at the time. I felt so bad leaving Pokka in his cage for too long, as he couldn’t live with any other rats. For 2.5 years, I just needed to be home for him. Although I felt bad for declining so many invitations from family and friends, I don’t regret spending a single second with my Pokka. I knew that my time with him was limited – especially as he got older, and his body started to deteriorate. For me, it helps to remember that those 2.5 years are just a drop in the bucket compared to how long my life could potentially be. It was all worth it.
It’s ok to feel frustrated at the situation. You may be feeling emotionally and physically tired. It’s possible to simultaneously be tired of the burden of all your pet’s problems, and want nothing more than to be there for them. Try to get support. Respite care is ok to ask for, even for pets. No judgment, whatever your situation is. It just is hard.
As with human care, hospice and palliative care are different (but related). Gardner works with clients to navigate both forms of care. Both she and BJ talked about how hospice and palliative care have negative connotations in the eyes of many people. Palliative care is the pursuit of a good quality of life. Hospice is all of that, but when the end is in sight. Have these conversations about palliative care and hospice if you feel your pet needs it.
Overall, this was a wonderful listen. Check out the full webinar here:
Mettle Health is dedicated to helping those with illnesses and conditions navigate their lives in a meaningful way. Take a look at the rest of their YouTube videos here:
There are some support groups you can find online, in addition to Facebook groups. I’m personally part of a private pet loss group on Facebook. Here are some resources I found just with a quick Google search:
Join us for this ‘ripped from the headlines’ webinar featuring a hot topic in the Active Surveillance community.
When world famous physician-scientist, leader of The Human Genome Project and former NIH Chief, Dr. Francis Collins, suddenly needs treatment for his prostate cancer that has accelerated from indolent to aggressive faster than a Formula 1 racer, many patients and medical professionals ask – whats up?
The NIH/NCI is considered one of the best medical institutions in the world. Did their active surveillance (AS) protocol fail or was Dr. Collins an anomaly? Do patients need to worry? … and is ‘cure’ really a possibility for Dr. Collins?
At short notice, AnCan Foundation, ASPI and The Active Surveillor have gathered together two world-renown urologists who curate their own AS cohorts. Drs. Peter Carroll and Laurie Klotz will discuss their views on the safety of pre-treatment AS for prostate cancer. Howard Wolinsky will moderate the discussion. AnCan’s own AS Support Group Moderators will be speaking after the presentation sharing their own thoughts
Watch here: (closed captioning is provided for this webinar, click the CC button at the bottom next to the gear.)
Special thanks to Bayer, Novartis, Johnson & Johnson, Myriad Genetics, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUPS, click here.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
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