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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Helpful Tips to be Your Own Best Medical Researcher
AnCan asked Mike Wyn, a valued AnCan Frequent Flyer and intrepid researcher, to provide a little navigation to those who are new to research… as well as useful tips for some old hands like myself. I’ve already gathered some research nuggets from Mike’s wisdom… thank you, Mr. W.
Here are a few tips ensure the medical information you are researching is reliable and accurate
Book Research
Check the publication date: authors may need at least a year to write a book, and the average time between a book’s acceptance and its publication is typically between 9 to 12 months. Hence, the data may already be outdated when it hits the shelves
Professional Presentations
Check the credentials, disclaimers, and disclosures of the presenters. Who is the author? What is the sponsoring organization providing the information? Preferred sources are from reputable institutions, such as universities, hospitals, or government health agencies.
Google Web Searches
Use command “site:” to limit you search to top-level domains like .gov, ,org and ,edu. For example, type: latest NCCN guidelines for prostate active surveillance site: .gov OR site: .org OR site: .edu
Be cautious with .com sites unless they are from recognized and credible entities. Medical databases such as PubMed, Cochrane Library, and Google Scholar are good sources for cross-referencing scientific research.
Articles, Online Posts
Check articles, online posts, videos etc. for their sources, including scientific studies, medical journals, or clinical trials. Information from peer-reviewed journals is typically more reliable than content from non-peer-reviewed sources. Poor reviewed means that other people similarly qualified to the author have reviewed teh article adn provided comments.
Anecdotal Evidence
Anecdotal evidence is information that has been observed by the person reporting but not verified. Be skeptical of anecdotal evidence such as personal stories. It is not scientifically reliable. Focus on information supported by scientific evidence and clinical studies. The quality levels of evidence from highest to lowest for medical data are:
Systematic reviews: collect and evaluate all available data/evidence within the researchers’ criteria. An example is the “Cochrane Database of Systematic Reviews”. Meta studies are a systematic review.
Randomized controlled trials: participants are randomly assigned to experimental and control arms. The double-blind trial is the gold-standard of medical research where neither the participants nor the researchers know the placebo or medication/treatment is given. This is to prevent bias and to ensure the validity and reliability of the study.
Cohort observational study: participants with common traits or exposure to the proposed medications or treatments are followed over a long period of time.
Case study or report: a detailed report of result after treatment of an individual. This is formalized and reviewed anecdotal evidence.
Medical Trial Reports
The phases of medical trial studies cited by published medical papers are:
Pre-clinical studies: laboratory experiments using cell cultures, animal or computer models. In vitro means tested In Vitro – literally ‘in glass’ means testing outside a living organism, in a test tube or petri dish, In Vivo – literally in life -means testing in a living organism, often mice. Then studies move on to humans…
Phase I trials: assess safety, dosage and side effects of the proposed medications or treatment.
Phase II trials: expand P 1 to evaluate efficacy of the proposed medications or treatment – how well it works..
Phase III trials: confirm efficacy, safety, dosage and to evaluate side effects of the proposed medications or treatment in much larger samples. This is often where randomized blind and double blind design is used. Blind means the patient does not know what they are getting; double blind means neither the patient nor the clinician know what is being dosed.
Phase IV trials: monitor long term effectiveness and safety of the medication or treatment.
Statistical Terms
Some terms regarding statistical data cited in medical journals are explained as follows:
N = the number of participants: be wary of studies with a very low N.
HR = hazard ratio: HR=1 – there is no change in the proposed medication/treatment compared to control baseline. HR<1 – there is a reduction of risks with the proposed medication/treatment. HR>1 – there is an increase risk with the proposed medication/treatment.
CI = Confidence Interval: A trial shows that a particular drug has a 20% effect within a certain time frame with 95% CI. This shows that the study, if repeated many times, it will be 95% confident that the 20% reduction will be consistently observed.
P-value = Probability Value: This measures how strong the evidence is that the hypothesis, or effect being tested, is correct, rather than the result being random, or incorrect (null hypothesis). We seek a P-value that is <=0.05 meaning that there is a 95% or better likelihood the result is attributable to what is being tested..
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
WELOME 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.
If you missed any recent recordings, you’ll find a full list either on our YouTube Playlist (click above) or visit our Blog Post https://ancan.org/our-recent-blog-posts-in-case-you-missed-them/ Sign up for our Blog by checking the New Blog box at https://ancan.org/contact-us/
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: You rarely get out of cancer Scott-free; and treatment decisions complicated by other chronic conditions (rd)
Topics Discussed
Evaluating treatment plan options (radiation, surgery, and hormone therapy) and quality of life issues associated with treatments; Participating in the RTIRE trial for treatment; Understanding different medical reports and tests for prostate cancer; Getting a third opinion to decide between surgery and radiation while seeking the best quality of life outcomes; Life after treatment and having the right mindset; Choosing a treatment option when other chronic conditions/diseases exist; What makes focal treatment a good option.
Chat Log
Jim Stewart Reno, NV sent: 6:25 PM
have to pick up grandkids so signing off….see you all next time!!
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:
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Janssen, Myriad Genetics, Novartis, Telix & Blue Earth Diagnostics.
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: What do medical medical marijuana and estradiol (E2) have in common? … cardiovascular risks (rd)
Topics Discussed
Is this Newbie getting enough radiation for his high risk situation?; darolutamide monotherapy or maybe a drug holiday?; ARX517 trial – PSMA antibody drug conjugate that carries cytotoxic payload; addressing sleep issues; otc CBN; medical marijuana comes with cardiovascular risks; switching your provider for cause; estradiol and phytoestrogens; early success with AR degrader ARV766; delaying Pluvicto #3 and considering PARP-i; is it a flare or progression?; fenbendazole
Chat Log
Jim Marshall, Alexandria, VA
sent: 3:23 PM
If anyone is facing Open Heart Surgery contact me and I can give you somethings the Surgeon might not mention. Jim 703-338-7341
Jim Marshall, Alexandria, VA
sent: 3:30 PM
Janssen also makes a Generic version oof Abiraterone (ZYTIGA). Have taken it as a generic
After being on Eligard + Abi for 5 years, it took 13 months to recover any testosterone after being on the 2 drugs for 5 yrs. a 90-day Eligard shot can last much more than 90 days
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