Dr. Herbert Geller, researcher and AnCan Advisory Board Member, had some great thoughts to share about clinical trials titled “Seeing Clinical Trials From Both Sides” for our partner ZERO – The End of Prostate Cancer. We liked it so much, we wanted to share it with you again. Thank you so much Dr. Geller for being an important part of AnCan, and the patient community.
Like many men with prostate cancer, my introduction to clinical trials started with my primary care doc saying “Your PSA of 3.1 is higher than last year, so let’s get it checked out”.
Off to the urologist, who found that my prostate was enlarged and scheduled a biopsy. But before I underwent the biopsy, one of my colleagues at the National Institutes of Health (NIH), a prostate cancer survivor himself, suggested that I participate in a clinical trial at the National Cancer Institute whose goal was to test whether MRI may be used to diagnose prostate cancer.
As a scientist and researcher, the decision to participate was obvious – first, if the MRI was negative, I could be spared a biopsy, but if it wasn’t then I’d be in good hands. Unfortunately, it was the latter – both the MRI and biopsy found cancer that spread outside the prostate. And so began my journey as a prostate cancer patient and my involvement in clinical trials.
The NIH is our nation’s premier research organization, whose mission is to improve our health through discovery. Every patient here – including me – is always part of at least one clinical trial, if not more.
While my next scans seemed conventional – CAT scan, MRI, bone scans, DEXA scan – the next one, a PSMA-PET scan, was under another clinical trial to evaluate PSMA to detect metastases and compare it with conventional imaging. The FDA has now approved PSMA-PET for this purpose, but the FDA approval was based on data collected by a different clinical trial conducted at UCLA and UCSF. So those of us who participated in a PSMA-PET trial have contributed to a major advance in prostate cancer treatment.
After my diagnosis and treatment, I was then recruited to another clinical trial which required a biopsy of my bone metastases. Though this trial was more invasive and required anesthesia, and would not directly benefit me, I gladly volunteered. While there was some inconvenience, and I did lose about a half day’s work, I didn’t feel any pain and I returned to my lab.
While these trials were designed to improve the diagnosis and treatment of prostate cancer, I’m also part of a trial here to evaluate the psychological effects of a cancer diagnosis. Like the biopsy, this one is not going to benefit me, but hopefully will lead to new insights to help others through our ordeal.
At the moment, my condition is stable with current treatment, but if things change, then I’m prepared to move on to clinical trials that are testing new therapies. While the most novel trials are Phase 1, which are designed to test toxicity, I’d probably look at either late Phase 2 trials, which generally are testing novel therapies that were shown to have manageable toxicities in Phase 1, or Phase 3 trials, which are the final steps before approval. These trials can both help provide a cure as well as needed information to move the field forward.
Because I am both a medical researcher and a patient, I see clinical trials from both sides. They are essential to advance medical knowledge. Without careful observation and controlled studies, we’d be back to the age of snake oil. And, yes, as a patient, trials require a level of commitment above normal therapy, but that’s a small price to pay for medical progress.
For information on our peer-led video chat PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
Be Your Own Best Advocate – Something we say a lot, definitely. And yeah, we wear it proudly on our shirts too. But we really mean it!
As an advocate myself, I truly believe change happens at the community level, and that includes in the doctor’s office as well. Times change, opinions change, and we’ve seen that a lot with Active Surveillance in particular. What was once controversial, is now a common discussion at the urologist. I’m so glad we had our Active Surveillance & Beyond! webinar series to make this even more mainstream.
On January 6th, we had the absolute pleasure of hosting the very esteemed Dr. Anne Katz (Certified Sexuality Counselor, and Clinical Nurse Specialist at CancerCare Manitoba in Winnipeg, Canada) at our Active Surveillance Virtual Support Group. She is also the author of Prostate Cancer & The Man You Love. Dr. Katz is such a rockstar in the cancer community, so I was definitely starstruck!
She answered all the questions our gentlemen, and their partners had. I highly encourage you to watch as I’m sure your questions will be answered too! She provided information relevant to all within the prostate cancer community.
We here at AnCan want to sincerely thank Dr. Katz for providing this invaluable resource.
Watch here:
To view the slides from this presentation, click here.
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Jan 12, 2021
Editor’s ChoiceBiTE discussion …… and hear from a man with metastatic disease that is now in remission with no hormne therapy required. (rd)
Topics Discussed
Advanced disease & ‘bispecific’ alternatives; lupus hits one of our men post ADT; handling depression; starting chemotherapy with lung nodules; viability of spot RT vs systemic Tx; dealing with long-term and intermittent ADT mentally; MX disease stabilizes with no further HT; managing your own GU med onc
AnCan Barniskis Room (to Everyone): 4:20 PM: Apologies for being late everyone
Bryce Olson (to Everyone): 4:23 PM: what is the pros/cons of BITE vs. Lu177. Why BITE over that. BITE just feels less direct, and you’ve got to get the CD3 cells into the tumor and tumor microenvironment could stop that from happening in BITE without some TKI that focuses on myeloid cells
Bryce Olson (to Everyone): 4:23 PM: I wanted to ask directly but my mic isn’t working
Herb Geller (to Everyone): 4:31 PM: The radiodirective therapies are more advanced with more data to support them. All the BiTEs are Phase 1, and have many more side effects. You are coorect that BiTEs are less direct, as they depend upon activating T cells and all the current ones are dealing with issues of T cell depletion.
John Ivory (to Everyone): 4:39 PM: Right, Peter. It’s unfortunate that seeing a psychiatrist is seen as controversial. I’ve been to a number of them.
Bryce Olson (to Everyone): 4:47 PM: Really sorry Rusty. I’ve been there before and I know how shitty the depression can be.
Rusty (to Everyone): 4:57 PM: I hurt and tired. I need to go bed.
AnCan Barniskis Room (to Rusty): 4:58 PM: From David Muslin to Rusty- feel better
Herb Geller (to Everyone): 5:42 PM: He seems fine, but the real issue is the approach he takes — why 10 sessions? Is this SBRT? But I think you may need more systemic approaches.
AnCan Barniskis Room (to Organizer(s) Only): 5:46 PM: Is he still on ADT?
George Southiere MD (to Everyone): 6:02 PM: Thanks to everyone for being here !
Pat Martin (to Everyone): 6:03 PM: Dxed with Gl 10 all 12 cores + with up to 80% cancer. In 2014. Pat Martin (to Everyone): 6:06 PM: Rp, ADT for 18 mos, Vacay, Rad with ADT, Lupron Zytiga for another 21/2 years, Vacay, PSA has come back from less than 0.03 to 0.59 in 6 months. last 3 months show a PSADT of 2.1 mo. Washington state. Am at Fred Hutchinson
Our Board Chair and long time moderator, Peter Kafka, tells us how he fortuitoulsy got his Covid vaccination last week. For the first time, Peter adds the High Risk/Recurrent//Advanced Prostate Cancer Group to his Moderation repertoire this week.
POKEY MAN
i just returned this morning from getting my initial Covid-19 Moderna vaccination. Happy to report that it was an uneventful event. My anxiety level was increasing in recent days as our positive cases began to tick up considerably out here on little Maui in the middle of the Pacific ocean. Information here is slow to filter down and when I inquired about the shot I was tole that it would be some time in April or May since I was not yet 75 years old. Then, I got a surpise call from the Pacific Cancer Foundation which I volunteer for in a support and advocacy capacity and they told me that they could get me into their priority group today.
I am certainly not bragging about the above, but I mention it because there was absolutely no hesitation or concern in me about going forward with the vaccination. In the past 7-years I have been poked and scoped and proded more times then I can count. This kind of comes along with signing up for medical treatment for advanced prostate cancer. I understand that there may be as many as 40% of Americans who may decline getting a Covid-19 vaccination according to polls and predictions. And this is a personal choice in our society. But I doubt that those of us who find ourselves in this subset of Prostate Cancer guys would be so reluctant.
Over the years I have met men who chose not to enter into any kind of treatment for their more advanced prostate cancer diagnosis. Some of these men are still around and others not. I always wrestle with what my role is in this decision. I can encourage, I can strongly suggest that someone at least consult with a doctor who might be more pursuasive than me, and most of all I can point to myself as an example of a man who has not suffered from a host of medical treatments thus far. But in the end everyone must live or not with the decision they make.
The other day we had an AnCan Webinar with Dr. Jonathan Epstein, the go-to pathologist at Johns Hopkins for second opinions. He mentioned that he does actually consult with some of the men who reach out to him. This brought a smile to my face when I recalled a good friend who was leaning toward his own alternative treatments for his GL-4+3 diagnosis. I encouraged him to get a second opinion from Dr. Epstein. On his own he called the office and Dr. Epstein listened politely for 10 minutes while my friend described his alternative treatment protocol. Dr. Epstein responded, “That is all fine and good and you can continue with that protocol but you need to know that without medical intervention this disease can kill you!” That was all it took, a few weeks later he was getting radiation and he is doing fine and we are best of friends.
Teamwork makes dreamwork here at AnCan, and we were thrilled to team up with PatientPower for the webinar series “Your Prostate Cancer Questions Answered“. Video and transcript are available in the links below.
In 2018, patients with nonmetastatic castration-resistant prostate cancer (nmCRPC) were watching and waiting. Two years later there are three novel androgen receptor inhibitors available. But more options mean more questions for doctors and for patients. In this first installment of our prostate cancer Answers Now series, we’ll explore these emerging questions around who should use what when, and why. We will also zoom out to give an overview of the disease and current treatment options. This event will be hosted by AnCan Founder Rick Davis and Len Sierra, AnCan Prostate Cancer Moderator. Dr. Eleni Efstathiou from MD Anderson Cancer Center in Texas and Dr. Tom Beer, Chair of Prostate Cancer Research at OSHU.
In this edition of our prostate cancer Answers Now series, we’ll learn about the latest in testing and imaging for prostate cancer with hosts & AnCan Prostate Cancer Moderators, Len Sierra and Peter Kafka. They will be joined by Scott Tagawa, MD, Professor of Medicine and Urology at NewYork-Presbyterian-Weill Cornell Medical Center in New York City and David VanderWeele, MD, PhD, Assistant Professor of Medicine in the Division of Hematology and Oncology at Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Feinberg School of Medicine. We invite your questions as we cover what PSMA PET and Next Generation Imaging can mean for patients at different points in their prostate cancer journey.
Talking honestly about one’s medical realities in the doctor’s office takes practice, but it is a crucial step to take. Tune in as experts discuss how transparent doctor-patient relationships can improve prostate cancer outcomes.
Hosted by AnCan Founder Rick Davis and Peter Kafka, AnCan Prostate Cancer Moderator. They will speak with Dr. Atish Choudhury, Co-Director of the Prostate Cancer Center at Dana-Farber Cancer Center about the importance of open communication between patients and physicians. What are the best treatment options? What side effects may I experience? What will my quality of life be? Expect all of these answers and more.
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording Jan 4, 2021
Happy New Year friends … may it be safe and healthy. Welcome to our first group of 2021 along with a few new organizational rules that you’ll hear about.
Editors PickThe Group settles a new man freaked by his diagnosis.(rd)
Topics Discussed
New Canadian Gent wrestles with hot flashes and HT side effects; Optum Rx changes its formulary on a specialty drug; considering different LHRH drugs; back to chemo when low dose abi stops working; denovo MxPCa Dx challenges yet another man mentally; monotherapy darolutamide and abiraterone; Dr. Efstathiou goes AWOL; Prostate Oncology invokes concierge policy; seeing Dr. Singh at Mayo for the first time; always give your doc a list of questions; what to expect when starting chemo
Chat Log Jake Hannam (to Everyone): 6:02 PM:
Our moderators will rotate the meeting chair throughout the month – we are still working on the schedule, and will confirm next week. The meeting hosts will be Rick Davis, Len Sierra, Peter Kafka and Herb Geller. All of us will still do our best to attend evey meeting.
We will use our AnCan blog more frequently to inform you of key developments in the PCa world, rather than taking time at the beginning of meetings. So please sign up to our Blog in the right sidebar to stay informed https://ancan.org/blog/ .
Meetings will start promptly no later than 10 minutes after the appointed start time – 6 pm or 8 pm Eastern. Those arriving later than ‘Ten After’ are still most welcome BUT will be lower priority if they need time. Latecomers will be polled only after all those arriving on time have beeen addressed. Again, LATE means 10 minutes after the start time.
The Moderators are creating a list of questions to help structure the time we dedicate to new men at the start of each meeting. We are limiting new men to 3 per meeting; additonal men will be deferrd to the following week.
Mark Perloe (to Everyone): 6:10 PM: If you are not speaking, please mute your microphone.
Carl Forman (to Everyone): 6:21 PM: Curious if anyone has recently received a letter from their medicare drug plan informing you that your med will no longer be covered in 2021, and you will be paying full price?
Jake Hannam (to Everyone): 6:23 PM: I sure hope not! Medicare Part D?
Frank Fabish (to Everyone): 6:25 PM: I get my treatment through the VA due to Agent Orange. So no limitations.
Carl Forman (to Everyone): 6:25 PM: Yes, Part D coverage. My Olaparib, which has not cost me anything out of pocket, will now possibly cost me $13000-16000 per month!
John A (to Everyone): 6:34 PM: Venlafaxine; Depot Provera
Mark Perloe (to Everyone): 6:41 PM: Please check out GoodRx Gold. I found that I got my meds at a price much less than Part D. Abiraterone was going to be $800 on Part D and $300 on GoodRx Gold. Unfortunately, I now go to three different pharmacies to get my meds.
Len Sierra (to Everyone): 6:42 PM: cyproterone
Peter Kafka (to Everyone): 6:45 PM: I suspect that this year we will see lots of changes in the medical insurance world due to the pandemic and challenges that hospitals are facing. Just my intuition.
Mark Perloe (to Everyone): 6:48 PM: Zejula may be the cheapest. None of the PARP inhibitors are listed in GoodRx.
Len Sierra (to Everyone): 6:51 PM: Talazoparib trade name is Talzenna
Peter Kafka (to Everyone): 6:52 PM: If this is true about Olaparib it will be a problem for women dealing with BRCA2 & 1 mutations as well as some of us guys. I suspect that Women will object
Len Sierra (to Everyone): 6:52 PM: Zejula trade name is niraparib, the generic name.
Mark Perloe (to Everyone): 7:01 PM: For me, 500 abiraterone with food is great. T is undetectable. It actually appeared to be a higher level with the lower dose with food.
Mark Perloe (to Everyone): 7:07 PM: I think if the T is undetectable, then dosing doesn’t really matter. Is the T undetectable? If so, then I doubt increasing will help. I thought the Prednisone vs Dex is about blood pressure to protect against suppression of cortisol.
John Ivory (to Everyone): 7:12 PM: It looks like Abbvie expected to start shipping Lupron again last month (see Lupron Depot 3 month 2nd line in table): https://bit.ly/393xN4L Looks like Takeda (Japanese pharma co) produces Lupron & Takeda claims they had a mfg problem: https://bit.ly/3rVBMZS
Len Sierra (to Everyone): 7:12 PM: Johann de Bono is an author on this paper in BJC: Tumour responses 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/
Mark Perloe (to Everyone): 7:13 PM: This randomized, Open Label Phase 2 study published in JAMA Oncology compared various dosing schedules of prednisone and one for dexamethasone which are used with Zytiga (abiraterone acetate). As you may know, some form of steroid is necessary for use with Zytiga to compensate for its inhibition of natural cortisol production. If not compensated, patients on Zytiga would suffer from a metabolic syndrome known as mineralocorticoid excess (hyperaldosteronism) resulting in hypertension and hypokalemia (low potassium) which could lead to metabolic alkalosis, tetany (muscle cramping) and irregular heart rhythms.
The various prednisone regimens included 5mg once per day, 2.5mg twice per day, and 5mg twice per day. Dexamethasone was given as 0.5mg once per day. For each of these subgroups, the following percentage of patients had no mineralocorticoid excess (a good thing!):
As they say, all good things must come to an end. While our 2020 Webinar Series “”Active Surveillance and Beyond” is finished, our support groups are still going strong! And if you’re feeling a little sentimental like we are, you can always rewatch the first, second, and third webinars.
Pathologist Dr. Jonathan Epstein (Director of Surgical Pathology at Johns Hopkins Institutions in Baltimore, Maryland) explains why he opposes reclassifying Gleason 6 as a noncancer, and why he thinks a second opinion should be sought on all pathologies, not just prostate cancer.
We want to graciously thank Dr. Epstein for answering our attendee’s questions!
Watch this fascinating and incredible webinar here:
