On March 3rd, we had the esteemed Dr. Darryl Leong (Cardiologist and Director of the McMaster University and Hamilton Health Sciences Cardio-Oncology Program) at our Active Surveillance Virtual Support Group.
Dr. Leong, explained to men on active surveillance that his work on men on AS makes sense because many of these men are at greater risk of dying from cardiovascular diseases—such as heart attacks and strokes—than they are to die from prostate cancer. He said there is strong evidence for the benefits of exercise to reduce CVD risk. He said the research on a diet is not as strong because there are few randomized studies. However, there is recent research from MD Anderson that the Mediterranean diet may have some benefits for men on AS. Long warned that many cardiologists are now questioning the long-accepted practice of taking one baby aspirin a day. He also answered questions about cardiovascular disease issues in men with advanced prostate cancer who are taking hormonal therapy.
We want to thank Dr. Leong for answering so many questions!
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, Mar 2, 2021
Editor’s Pick: We rarely discuss anesthesia – but we did tonight. Along with estrogen treatment! (rd)
Topics Discussed
Recurrence with multiple spots; signet cells; artifical urinary sphincter; anesthetic choices; estrogen therapy; elecrostimulation for incontinence; i-131 PSMA radionuclide trial; abscopal effec from spot RT; regulating your own LHRH; relugolix; Flomas and shortness of breath; metformin & statins
Chat Log
Jake Hannam (to Everyone): 6:35 PM: Genomic Loss of Heterozygosity (LOH) or genomic instability is often related to defective homologous recombination repair mechanisms.
Herb Geller (to Everyone): 6:38 PM: I did find that BRCA mutations can lead to LOH.
AnCan – rick (to Organizer(s) Only): 6:41 PM: aggressive Tx
Mark Perloe (to Everyone): 6:44 PM: But loss of heterozygosity is of uncertain significant unless it relates to BRCA2
Herb Geller (to Everyone): 6:45 PM: That’s true – BRCA can lead to LOH, but LOH without BRCA is not informative/
Mark Perloe (to Everyone): 6:45 PM: I did trelstar and abiraterone. It was rough at first, but with exercise it was quite tolerable. Darolutamide does not cross the blood brain barrier, so how one feels is less disrupted. I agree that over agressive treatment may lead to earlier progression to CR status or neuroendocrine disorder. Deferring immune approach without BRCA2 seems to be outside the standard of care. Is Darolutamide covered to the same extent as other receptor blockers?
Herb Geller (to Everyone): 6:49 PM: Darolutamide may have a more favorable profile of actions.
Carlos (to Everyone): 6:56 PM: signet cells
Carl Forman (to Everyone): 6:58 PM: Is anyone on Relugolix (Orgovyx) as a replacement for, or instead of, Luporn/Eligard? It is a pill instead of an injection, and lower risk of cardiovascular events.
Herb Geller (to Everyone): 6:59 PM: It is a histologic variant of adenocarcinoma that responds very similarly to hormone therapy.
John Ivory (to Everyone): 6:59 PM: I’ve been on Relugolix for just a week instead of Lupron.
Peter Kafka (to Everyone): 7:01 PM: I am not sure Relugolix is covered by insurance yet. At least that is what I have heard. Perhaps it is too new.
John Ivory (to Everyone): 7:02 PM: I’m on Medicaid (not Medicare) in Illinois. Was surprised I was covered. Expected not to be. Maybe since it avoids the need for a nurse for the injection?
Mark Perloe (to Everyone): 7:08 PM: Propofol is great. It is just not an at home disease. We loved it for egg retrievals. You won’t remember going to sleep. They tell you it might burn, and the next thing you are ready to get dressed.
Carlos (to Everyone): 7:10 PM: No one complains about Prpopfol or Versed either.
Herb Geller (to Everyone): 7:13 PM: For me, I always taught that you taste almonds and then go to sleep.
Jon McPhee (to Everyone): 7:13 PM: What is the stuff they are discussing?
AnCan – rick (to Everyone): 7:14 PM: estradiol
Carlos (to Everyone): 7:14 PM: Estrogen
Jimmy Greenfield (to Everyone): 7:17 PM: Wassersug said exactly this
Carlos (to Everyone): 7:20 PM: Yes Wasserburg is the source.
ALFRED LATIMER (Private): 7:20 PM: Dr E was very dismissive of my use of estrodiol. Said it was “old school”.
Jimmy Greenfield (to Everyone): 7:22 PM: everyone should know Wassersug is cool, very kind and approachable you can easily get his info he answers email
Carlos (to Everyone): 7:23 PM: Does anyone know a doctor that works with estrogen? I would like to explore that further. Are you using a patch?
AnCan – rick (to Everyone): 7:35 PM: Salivary Glands https://www.prostatecancer.news/2021/01/avoiding-radiation-damage-to-salivary.html
Carlos (to Everyone): 7:40 PM: UCLA and SFO are using gallium-68. Gallium-68 is for the PSMA PET scan. Oligometastatic is 5 or less metastatic lesions.
Herb Geller (to Everyone): 7:46 PM: The definition of oligometastatic is not so precise. Others use 3 and some would go further than 5.
Carlos (to Everyone): 7:50 PM: You are correct. Five is the cut off for getting focal radiology treatment.
Mark Perloe (to Everyone): 7:52 PM: Or you treat primary and the oligo mets respond. Dr. Kishan did not believe it exists in prostate
Mark Finn (to Everyone): 8:12 PM: folks – got to go. Thanks for an informative session.
Frank Fabish (to Everyone): 8:13 PM: I am checking off. See you next week. I have my 4th Chemo next Thursday.
Jon McPhee (to Everyone): 8:18 PM: On Flomax I noticed incidences of low blood pressure when exercising or hiking in hills. Have gone to Flowmax every second day and that helps
Mark Perloe (to Everyone): 8:18 PM: Take CO Q10 on statin
Herb Geller (to Everyone): 8:18 PM: I think I’ll try that – I am peeing fine, so I might ot need it at all.
Skip Maniscalco (to Everyone): 8:18 PM: What is too much Metformin?
Mark Perloe (to Everyone): 8:19 PM: I take 1000 mg bid\
Skip Maniscalco (to Everyone): 8:19 PM: Any difficulty? That is what I take
AnCan’s own highly qualified research scientists, Herb Geller and Len Sierra, attended the mid-February virtual GU (Genitourinary) ASCO on our behalf. Much gratitudeGents!
Here’s their 45′ presentation to our Group made on Feb 23 before our regular support group meeting. It covers their handpicked highlights of the Conference including a review of the best medical presentation Herb has ever heard(!!!) and a new oral chemotherapy drug for advanced prostate cancer.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording 2/23/21
Editor’s Pick: For our Vets this week, a vigorous discussion around using the VA, why to dual enroll, and Agent Orange.(rd)
Topics Discussed
Recurrence after Focal Laser Ablation; ARV-110 trial; high urea & creatinine; sacrocranial massage; estradiol patches; ProTER Lu177 PSMA trial; relugolix; enroll at the VA as well as your civilian provider; Agent Orange; electrostimulation for incontinence; restarting ADT when it was tough first time; exercise, ADT and Donna Wilson!; lasting as long as you can before starting ADT; artifical urinary sphincter procedure;; BiTE trials; Dr. Charles Drake – where are you?
Chat Log
Bill Franklin (to Organizer(s) Only): 4:00 PM: Really!? 15 slides? It didn’t seem like that many. 🙂 $75.00 already donated via PayPal.
AnCan – rick (to Everyone): 4:22 PM: Dennis McGuire is now with us!!!
Jake Hannam (to Everyone): 4:31 PM: Axumin PET/Ct Herb Geller (to Everyone): 4:36 PM: This trial NCT03939689 has MD Anderson as a site and used PSMA PET imaging
Julian Morales (to Everyone): 4:41 PM: Thank you Jake and Herb!
Pat Martin (to Everyone): 4:47 PM: What is Carl’s PSADT? That could tell him when he’ll fit the 4.0 threshold correctly.
Paul Freda (Private): 4:56 PM: For a long long time we’d have 20 – 25 show up. But recently I am seeing numbers >30 and tonight we hit 40. First time I have seen that.
Bob McHugh (to Everyone): 5:06 PM: PSMA avid?
Pat Martin (to Everyone): 5:17 PM: They have enlarged it to MOST bases as they used Agent Orange throughout to control vegetation. VFW posts usually have someone on site to help with the paper work
Jake Hannam (to Everyone): 5:21 PM: ty Pat
AnCan – rick (to Everyone): 5:25 PM: http://www.uroplasty.com/
AnCan – rick (to Everyone): 5:26 PM: DAV Disabled American Veterans is also a great source …. <http://www.dav.org/>
Jim Marshall – Alexandria, VA (to Everyone): 5:28 PM: IT is said 18M+ gallons were dumped all over Vietnam over 11 years. Have an analysis of where, when, what and ho wmuch was dumped if anyone is intersted. send me an e-mail at Marshall-james@Comcast.Net Got it from Agent Orange Lawsuit. AF-Ret, 200% VA Disabled.
Mark Perloe (to Everyone): 5:29 PM: Can they use abiraterone and prednisone alone? They should block testosterone from the testicles as well.
Mark Perloe (to Everyone): 5:31 PM: Peloton each morning helped with brain fog and weakness.
Herb Geller (to Everyone): 5:31 PM: But there should be no difference in side effects
Frank Fabish (to Everyone): 5:33 PM: I need to drop off. Thank you. See you next Monday.
Mark Perloe (to Everyone): 5:41 PM: Absolutely Jimmy. Aerobics is not enough. It helps endurance, but cardioprotection comes from building and protecting muscles.
Mark Perloe (to Everyone): 5:41 PM: You can use bands, or dumbells.
Pat Martin (to Everyone): 5:43 PM: Lifting also strengthens your bones
Jimmy Greenfield (to Everyone): 5:43 PM: Definitely!
John Ivory (to Everyone): 5:47 PM: Yes. My mind never wants to believe that exercise will help, and it protests, but both resistance and cardio both give me energy. I usually don’t need a nap on days that I exercise.
Alan Moskowitz (to Everyone): 5:50 PM: To those who do muscle strengthening while on hormone therapy, how hard and how long and how frequently do you do weight training / band training exercise? I hesitate even how, pre-ADT, to push myself too hard because of muscle strain, arthritis, etc.
Jim Marshall – Alexandria, VA (to Everyone): 5:51 PM: Exercise has been my slavation, biking almost every day just tooling around the local area for 30-45 minutes, Plus hydration around 60 fluid oz per day. Eat frozen grapes to mitiage hot flashes. Also works with chunks of frozen banannas.
John Ivory (to Everyone): 5:52 PM: Thanks for the info, Rick. I listened to the talk today and have some taps open to check out her exercises.
Pat Martin (to Everyone): 5:53 PM: I’ve been in ADT twice so for and usually use a weight that I can rep 15 times and then do 3 sets. My MO got on me when I would slack off and explain to him I didn’t have any T. You won’t be building muscle, mainly maintaining.
John Ivory (to Everyone): 5:53 PM: https://ancan.org/keep-movin-donna-wilson-rn-msn-rrt-webinar/ @Pat Martin, I hadn’t done resistance training before and started with this easy routine from PCRI https://pcri.org/sky-2/2017/9/19/fitness-and-longevity-rylt4
Jerry Pelfrey (to Everyone): 5:55 PM: I exercise every day in the morning. Treadmill for one hour which is about 3 miles. As I am walking I use 3 lb weights and do upper body work. Pat Martin (to Everyone): 5:55 PM: I watched a presentation from them today.
Len Sierra (to Everyone): 5:55 PM: Thanks for the link, John Ivory!
Pat Martin (to Everyone): 5:55 PM: Good group.
John Ivory (to Everyone): 5:55 PM: NP, want to check it out myself! 🙂
Jimmy Greenfield (to Everyone): 5:57 PM: Building muscle is tough at our age even without supressed T. You can get it done with light weights, bands, calisthenics etc but you have to do a lot of repetitions.
Mark Perloe (to Everyone): 5:57 PM: how long do you continue prednisone after stopping abi.
AnCan – rick (to Everyone): 5:59 PM: stop slowly Doc ……. you know that
Jimmy Greenfield (to Everyone): 5:59 PM: but it’s good for everybody!
Alan Moskowitz (to Everyone): 6:04 PM: thanks for the comments on exercise.
Mark Perloe (to Everyone): 6:06 PM: Thanks. They always say that CYP17 inhibitor is irreversible.
Mark Perloe (to Everyone): 6:06 PM: Anyone have an idea on Jeffrey Turner? My oncologist left the practice and I can’t get an answer from them.
Pat Martin (to Everyone): 6:07 PM: I stopped taking Abi and Prednisone at the same time. Didn’t notice any SEs.
David Muslin (to Everyone): 6:07 PM: Got to go guys. See you next week.
Jimmy Greenfield (to Everyone): 6:07 PM: Alan get a trainer if you’re unsure, but in general you’re going to hurt yourself far more backing off than to do it. I use a pulse rate monitor also
John Ivory (to Everyone): 6:08 PM: Jimmy, how much should a trainer cost and how often do you use yours?
Herb Geller (to Everyone): 6:08 PM: Charles Drake is VP of Immuno-oncology at Janssen.
Mark Perloe (to Everyone): 6:08 PM: Thanks. I’d be most grateful.
This week, Peter Kafka considers how the constraints on providing health care during the pandemic may have long term consequences.
As an editorial note, we now see how discouraging PSA testing has come back to haunt us. The American Cancer Society projections for new prostate cancer cases in 2021 have leapt 30% from 2020 to 2021 reaching ca. 249,000. Ancan puts it down largely to built-up backlog due to lack of testing. (rd)
As I sit down to compose this reminder notice for our upcoming meeting, I am very much aware that here in the USA this weekend we will probably reach the milestone of half a million recorded deaths from Covid-19 in the year since the first deaths were reported. Regardless of how you might process numbers such as this, one thing for sure is that this Pandemic has flipped much of our healthcare system on its head and that impacts all of us. And of course, this is not only true in the US, but throughout the world.
Just the other day, “I heard it through the grapevine… that my medical oncologist (for the past 6-1/2 years) would no longer be mine”. Yes, the thriving practice that he was such an integral part of began losing so much money this past year that he had to depart for his own financial security. Many independent medical practices are struggling as are hospitals that depended upon elective surgery and emergency room visits to remain financially viable. People just aren’t going to the doctor the way they used to in 2019.
Men were notorious for avoiding doctors even before this pandemic. But now it is amplified. For those that are healthy and young the impact is minimal. But for those who are older and have increased risk of serious illness and disease such as cancer, the impact on both men and women is considerably higher. Statistics are now rolling in comparing the diagnosed incidence of various cancers in 2020 to the totals of 2019 BC (Before Covid). The difference is substantial and not just a statistical fluke. Someone might take this to mean, “Great, cancer rates are dropping”! But unfortunately, this is not the case. Men and women are forgoing routine screening and testing for cancer for fear of going to hospitals, clinics and doctors.
Unfortunately, the implication is that in the months and years ahead there may well be a significant rise in the number of cancer cases that have advanced to a more serious metastatic stage because of a decline in early detection and early treatment. While the incidence of seasonal flu has slowed way down in this age of Covid-19, prostate cancer as well as other cancers and serious illness are still chugging along at the same clip, but just not being diagnosed. So, I think I will leave it there for you to draw your own inferences. If it were me, I would encourage anyone I know not to ignore symptoms and concerns about their health even if it is more difficult to get medical help.
