Should you monitor your testosterone level ….. ? The group consider and discuss. (Tx for all b-day wishes! rd)
Topics Discussed
GU med onc places Mx man on LHRH alone???; Intermittent Hormone Therapy considerations; monitoring Testosterone levels; using different labs; trigger finger and HT; Bipolar Androgen Therapy; finding 2nd opinions remotely; when does a symptom warrant reporting; PSMA scanning tests; dealing with Brain Fog
Chat Log
Herb Geller (to Everyone): 6:15 PM: But yes, ACTH might be a better indicator.
Mark Perloe (to Everyone): 6:20 PM: I’m on Zytiga and prednisone. Dr. Turner drew a cortisol level and I got a call that my cortisone was low, but prednisone minimally affects blood cortisol level. I would think that ACTH would be a better marker. BP is normal, and I’m feeling ok. We dropped Zytiga to 500 mg/day with food. Turns out a recent study suggested lower DHEAS from adrenal with 500 vs 1000mg the standard dose. I appreciated cutting the cost in half as well.
John I (to Everyone): 6:29 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/amir-mortazavi
Herb Geller (to Everyone): 6:39 PM: abiraterone – trade name ZYTIGA
Jake Hannam (to Everyone): 6:39 PM: Zytiga
Mark Perloe (to Everyone): 6:42 PM: Also on Zytiga+prednisone.
Frank Fabish (to Everyone): 6:52 PM: thank you all
AnCan – rick (to Frank Fabish): 6:54 PM: Pleasure Frank ….. keep coming back
Frank Fabish (to Everyone): 6:55 PM: intend to. i’m pleased with this first meeting
John I (to Everyone): 7:20 PM: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
Herb Geller (to Everyone): 7:21 PM: https://cdmrp.army.mil/pcrp/research_highlights/20denmeade_highlight.aspx
Ken A (to Everyone): 7:24 PM: MDA stated BAT is not a good idea and they have had no success.
Mark Perloe (to Everyone): 7:48 PM: PSMA-rh study at Emory
John I (to Everyone): 7:57 PM: Here’s the org I just mentioned: http://dbsaalliance.org/
As reported in the Nov. 5, 2020 issue of JAMA Oncology, as many as half of all liquid biopsy-identified DDR (DNA Damage Response) mutations may be false positives. This may lead to patients being treated inappropriately with PARP inhibitors such as Olaparib or Rucaparib.
The cause of these false positives is what are known as CHIP variants. CHIP is an acronym for Clonal Hematopoiesis of Indeterminate Potential. These are clonal mutations of Stem cells of blood forming organs, primarily the bone marrow. This is a mostly harmless phenomenon that occurs with increasing frequency as we age. Some of these CHIP variants include the same mutations found in advanced and metastatic prostate cancer patients, but the CHIP variants are not related to prostate cancer at all.
The most common DDR CHIP variant the authors identified was ATM, followed by BRCA2 and CHEK2. The authors speculate that these false ATM mutations may account for the low response rates of prostate cancer patients treated with Olaparib.
Most commercial testing labs use only plasma samples for liquid biopsies called cfDNA testing, i.e., cell-free DNA. The authors found that CHIP interference variants could be distinguished from prostate cancer variants using a paired whole-blood control along with the plasma specimen. Sorry, I know this is kinda technical. But the bottom line is this: If you get a liquid biopsy and they are sequencing cfDNA to detect prostate cancer mutations, ask them if they use a whole-blood control along with the plasma specimen.
AnCan is keeping the informational content going to make sure we fully support the needs of our incredible community. We had the absolute pleasure of having Natalie Ledesma, MS RD(Oncology Dietitian, Patient and Family Cancer Support Center, UCSF Helen Diller Family Comprehensive Cancer Center) speak to our Active Surveillance Prostate Cancer Group about Nutrition and AS. We’re sure you will enjoy Natalie as much as we did!
Watch this excellent presentation here:
To view the slides for this presentation, please click here.
To view another nutrition and prostate cancer webinar we have with Greta Macaire, RD, please 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.
An article Howard has been developing for some time, The Swinging Pendulum of PSA Screening, was finally published this morning. It included not just thorough research (as always!) but interviews with significant names …. and I do NOT include myself in that crew. One of those names was USPSTF Chair, Dr. Alex Krist who agreed with many of us “that (prostate cancer) overtreatment could have been prevented if doctors used the PSA information more judiciously.”
Howard’s article goes on to quote Dr. Krist ….
“Back in 2012, the data actually showed that that’s not what was being done.In fact, 90% of men with low-grade prostate cancers were getting surgery and radiation,” said Krist. “And we know today that that is overtreatment, and the treatment patterns changed between 2012 and 2018 [when USPSTF again reviewed its PSA guidelines].”
What breaks my own heart are the number of men now diagnosed so late that their disease is already metastatic resulting from not being PSA tested and its D Grade awarded by the USPSTF … and many of these men are in their 40’s and 50’s. Just last week we buried a 55 yr old man with two young kids diagnosed de novo metastatic in 2016. He had a family history … a reasonably intelligent GP should have known that and tested his PSA starting at 40 or 45. And he should have been tested for an inherited mutation and never was … but that’s a whole different blog post!
Remember, PSA TESTING IS ABOUT INFORMATION NOT TREATMENT! What you and your doctor do with that information is between you …and that is why you have to be your own best advocate. That said, without information, it’s tough to advocate!
Editor’s Choice: Tough one this week ….. very useful discussion on insurance issues, and we also learn some intersting things about Xgeva (…. see Chat), not to mention monotherapy AR blockers (rd)
Topics Discussed
PCF Scientific Retreat review; what to do when insuracne says ‘No’; managing abiraterone side effects; bone density and hormone therapy … is Xgeva a lifetime drug?; chemo may send PSA up .. THEN down!; do T levels matter with monotherapy androgen blockers?; Phase 1 trial experience with a glucocorticoid blocker; what type of SBRT to choose for gland ablation; does switching from an LHRH antagonist to agonist casue a flare?
rick (to Everyone): 5:10 PM: Prolia …. same as Xgeva Ancan –
rick (to Everyone): 5:12 PM: denosumab ….
Len Sierra (to Everyone): 5:16 PM: Patients need to be advised of the increased risk of bone loss and vertebral fracture when therapy is stopped. If denosumab needs to be stopped, it should be replaced by an alternative osteoporosis medication to help prevent rapid bone loss and risk of fractures (Symonds CMAJ April 2018).Oct 23, 2018
Jake Hannam (to Everyone): 5:18 PM: osteo-necrosis of the jaw (ONJ) is the real danger
John I (to Everyone): 5:19 PM: thanks for the research Len & Jake
Jim Ward (to Everyone): 5:58 PM: I’ve got a question re going to 1-month Lupron shot due to the shortage after consistently doing 3-month shots
Jim Ward (to Everyone): 6:07 PM: Thanks for the comments, guys. Sorry about my mic; don’t know what’s going on there
Ken A (to Everyone): 6:07 PM: whats your t -level Jim
Things don’t always go the way we plan … or want.- from the recent elections to our health, to just taking care of daily biz. We have to be careful how that impacts the way we interact with others. Peter’s thoughts crystalllize how our emotions can impact many more than just us (rd)
“WINNING AND LOSING”
As I sit at my desk, it is Monday morning November 2nd the day before election day. I woke up this morning thinking of this theme and how applicable it is to those of us dealing with a cancer diagnosis. In our case a diagnosis of Prostate Cancer.
For 24 years my final career was as a maintenance supervisor for Haleakala National Park. One of my duties in that position was to be a Heli-Manager. This involved coordinating and managing the ground operations for the periodic use of contract helicopters that we used to transport firewood and other materials to the Park’s historic backcountry cabins. This job had many inherent dangers including hooking up a swivel cable to the belly of a helicopter hovering just a foot or two over my head, loading cargo nets with materials to be sling loaded to the drop sites, calculating the weights of each load, ensuring the safety of myself and that of the rest of my ground crew and communicating by radio to the pilot and others of my crew on the receiving end of the cargo. It was a lot to keep track of, and it required a high level of intensity and concentration.
One Monday morning during this operation one of my employees came to work, and his home state professional football team had lost in the playoffs the day before. He was pretty bummed out. So bummed out that I didn’t take it seriously at first. Afterall, football was just a game in my mind. Life goes on. But in his mind, it was pretty close to the end of the world. I tried my best to get him to “let it go”. But he would not drop his gloomy attitude of defeat. It was so pervasive in him and he would not stop talking about it to the rest of the crew. It was becoming a big distraction and for the safety of our task at hand I had to send him off to do another job on his own far away from our helicopter operations.
I bring up this story because it is all too easy to associate a cancer diagnosis with somehow losing. This can be an insidious and infectious attitude that can not only weigh down ourselves, but those around us including family, friends and even our medical support community. An exaggerated negative attitude and clinging to the feeling that one has “lost” can be a dangerous distraction.
In the bigger picture, we have not lost. Our bodies might be quite challenged due to our diagnosis, but we still have a vital part to play in our family, our workplace, our community and it is NOT to infect all of these others with a bummed-out attitude lest we drive them away, and we quickly will.
Our attitude, like diet and exercise is one of the key things that we have absolute control over. In my own experience if I find myself starting to wake up on the wrong side of the bed, I rearrange the furniture and put THAT side of the bed against the wall so that I have to wake up on the RIGHT side. Bottom line, take responsibility for your own attitude!
Editor’s Choice:While there’s lots of talk about PSMA scans this week, the discussion around tolerating abiraterone v. enzalutamide is my pick! (rd)
Topics Discussed
Denovo Mx diagnosis has been through most treatment options – what next?; SBRT for recurrence – Part 1 almost over; looking at trials for advanced Mx disease; abi better tolerated than enz – but what about others?; Spot RT slows doubling time – is that enough without ADT?; PSA-progression recurrence shows nothing on PSMA scan – what treatment?; man with recurrence finds an invitation-only PSMA scan; long time Mx survivor seeks PSMA scan; denovo Mx man received less than standard care and now seeks GU med onc
Chat Log
Len Sierra (to Everyone): 6:33 PM: BiTe = Bispecific T-cell Engager
Len Sierra (to Everyone): 6:35 PM: Talabostat is an experimental drug that initiates an inflammatory response in the tumor microenvironment, converting cold tumors to hot tumors and thereby making them better targets for checkpoint inhibitors, like pembro or nivolumab.
Jake Hannam (to Everyone): 6:37 PM: Why give up on enzi after just one month?
Jake Hannam (to Everyone): 6:41 PM: AR V7
Jake Hannam (to Everyone): 6:46 PM: rd@ancan.org
Mark (to Everyone): 7:04 PM: Isn’t Blue Earth for Axumin and rh-PSMA
Mark (to Everyone): 7:15 PM: Abi blocks steroid production. Won’t levels still be zero with monotherapy?
Len Sierra (to Everyone): 7:17 PM: Mark, there was a trial showing that Abi alone was just as effective in suppressing T-levels as Abi + Lupron.
Herb Geller (to Everyone): 7:27 PM: Concomitant intake of abiraterone acetate and food to increase pharmacokinetic exposure: real life data from a therapeutic drug monitoring programme By:Groenland, SL (Groenland, Stefanie L.)[ 1 ] ; van Nuland, M (van Nuland, Merel)[ 2 ] ; Bergman, AM (Bergman, Andries M.)[ 3 ] ; de Feijter, JM (de Feijter, Jeantine M.)[ 3 ] ; Dezentje, VO (Dezentje, Vincent O.)[ 3 ] ; Rosing, H (Rosing, Hilde)[ 2 ] ; Beijnen, JH (Beijnen, Jos H.)[ 2,4 ] ; Huitema, ADR (Huitema, Alwin D. R.)[ 2,5 ] ; Steeghs, N (Steeghs, Neeltje)[ 1 ] EUROPEAN JOURNAL OF CANCER Volume: 130 Pages: 32-38 DOI: 10.1016/j.ejca.2020.02.012 Published: MAY 2020
Mark (to Organizer(s) Only): 7:34 PM: The abstract did not show a lower dose, just ok for light snack.
Len Sierra (to Everyone): 7:41 PM: From Allen Edel: About 90-95% of metastatic men express at least some PSMA on their prostate cancer cells. Less aggressive PCa produces much less PSMA.
Ancan – rick : 7:42 PM: color.com
Mark (to Everyone): 8:07 PM: This is the low dose abiraterone article: J Clin Oncol . 2018 May 10;36(14):1389-1395. doi: 10.1200/JCO.2017.76.4381.
AnCan was deeply honored to co-present the webinar “Prostate Cancer Connections: Genetics, Genomics and Prostate Cancer” with US Too International.
For the second of our three Prostate Cancer Connections webinars, we offer a discussion on genetics, genomics and prostate cancer. About this exciting emerging topic, panelist Katie Stoll states, “Genetic testing technology is changing rapidly and there are a growing number of genetic testing options available. We’re here to help you sort through the wealth of information in this new age of genetics. Our goal is to provide objective expertise and latest developments.”
Recorded on Thursday, October 15, 2020, you’ll enjoy hearing from distinguished panelists Heather H. Cheng, MD, PhD (Director, Prostate Cancer Genetics Clinic, Seattle Cancer Care Alliance), Katie Stoll, MS, LGC (Executive Director, Genetic Support Foundation), James Barrett DeLong (Patient Perspective, University of Washington School of Social Work, Lecturer Emeritus), Janet Shimabukuro (Patient Perspective).
Watch this outstanding webinar 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.
Editor’s Pick The estrogen discussion is a rare topic in this forum; and, we finally pick apart IHT for one of our gents. (rd)
Topics Discussed
Estrogen and prostate cancer; 2018 denovo metastatic PCa diagnosis treated with Lupron alone; issues to raise re. Intermittent Hormone Therapy; docetaxel and HT may no longer be working; are lesions in the prostate bed considered oligometastatic disease?; Ph 1 trial experience; Jake appointed our Official Muter!; Eary success with ViewRay; Eligard vs Lupron: even after years, PSA wandering in a anarrow range well below 1.0′ Provenge.
Chat Log
AnCan – rick (to Everyone): 3:17 PM: Direct to our AnCan blog https://ancan.org/blog/
Mark Perloe (to Everyone): 3:23 PM: Does anyone.know if abiraterone has an effect on cholesterol?
Len Sierra (to Everyone): 3:25 PM: Abiraterone contributes to metabolic syndrome which raises cholesterol.
Larry Fish (to Everyone): 3:33 PM: how long for PSA fo go to 1.7 from .02 any idea of doubling time
Mark Perloe (to Everyone): 3:40 PM: Without treatment of the prostate with surgery or radiation, I find it hard to see it really go that low by just Lupron. I also wonder what tracer was used for PET scan.
Peter Kafka (Private): 3:40 PM: Has Tony had a biopsy? He did not say. Does he have a GL score? All he said was Stage 4
AnCan – rick (to Everyone): 3:41 PM: Mark ….. lupron can drive and keep it that low. We used to see that frequently Mark Perloe (to Everyone): 3:42 PM: Would he possibly benefit from radiation of prostate hoping for the abscopal effect. Would abiraterone be more appropriate than a receptor blocker?
Joel Blanchette (to Everyone): 3:43 PM: Dr. Mohammad Rahman, MD is a Medical Oncology Specialist in Steubenville, OH and has over 35 years of experience in the medical field. He graduated from Dow Med Coll medical school in 1985. He is affiliated with medical facilities East Liverpool City Hospital and Trinity Medical Center East. He is accepting new patients. Be sure to call ahead with Dr. Rahman to book an appointment.
Mark Perloe (to Everyone): 3:46 PM: FDA approved a urine liquid biopsy for prostate CA miR Sentinnel PCC4 Assay. pretty good sensitivity 94% and specificity 92%. It is used to predict presence of CA and asses the risk of high-grade tumors. Not sure I’ve seen any liquid biopsies that can be used to follow or monitor treatment.
Larry Fish (to Everyone): 3:47 PM: He is a Hemotologist
John I (to Everyone): 3:48 PM: Looks like Dr. Rahman is a generalist medical oncologist –many things conditions treated, but not PCa Ovarian Cancer Malignant Neoplasm of Female Breast, Melanoma, Non-Hodgkin’s Lymphoma, Lung Cancer, Bladder Cancer, Gastric Cancer, Hodgkin’s Lymphoma, Malignant Neoplasm of Colon, Testicular Cancer, Pancreatic Cancer. Leukemia, Rectal, Abdomen, Small Intestines, or Colon Cancer, Multiple Myeloma
John I (to Everyone): 3:48 PM: https://wb.md/3mpPxN1
Tracy Saville (to Everyone): 3:54 PM: I have to drop off, everything going well here. see you guys next week.
John I (to Everyone): 4:16 PM: I hadn’t seen the UCSF pamphlet on hormone therapy before. For anyone else who hasn’t, it’s here: https://bit.ly/2HDyhVl
AnCan – rick (to Everyone): 4:38 PM: If you are failing the chemo, then a couple of strategies occur to me, Ken. 1. Rechallenge with a second line anti-androgen – either abi or a blocker 2. Switch to a different chemo combination like cabazitaxel 3. Sequence again and see if there is anything new to treat. 4. Consider a bi-specific trial … viz AmGen, Xencor, Regeneron BiTE (AMG 509) in Greensville …… ClinicalTrials.gov Identifier: NCT04221542 Xencor XmAb20717 in Charlottesville ClinicalTrials.gov Identifier: NCT03517488
Herb Geller (to Everyone): 5:01 PM: Sorry. Gotta eat dinner. See you Monday.
James Barnes (to Everyone): 5:03 PM: Good night guys! Great meeting!
Jim Ward (to Everyone): 5:04 PM: Good night, gents. Thanks for the input re intermittent ADT! The cancer center where I’m receiving Lupron in Tallahassee, FL only had a 1-month Lupron shot availble for my last shot. So, it looks like I’m going with monthly shots for now.
John I (to Everyone): 5:11 PM: Gotta run–wishing everyone a great week!
James Doyle (to Everyone): 5:12 PM: Thanks for your input and be safe. :-(])
On our third edition of The TALK, a series of webinars addressing how parents and kids of every age speak to each other about their health conditions, we had an amazing night with marvelous members of the Multiple Sclerosis community.
On Wednesday, September 30, we were honored to have Dr. Aaron Boster (Board-Certified Neurologist specializing in Multiple Sclerosis and related CNS inflammatory disorders, founder of The Boster Center for Multiple Sclerosis, and popular MS Vlogger.) gives a passionate perspective on MS and community. Brenda Miller (MS certified nurse and MS patient) moderated conversations with Dr. Boster and our excellent panelists featuring: Karrie Anderson (diagnosed in 2010), her husband, Cris, and their 13-year-old son, Kellen. Wanda Terrell (diagnosed in mid-1990s) and her 27-year-old daughter, Tazia. Justin Weiss (diagnosed in 2008), his 17-year-old daughter, Megan. And Channing Barker (diagnosed in 2006 when she was 16) with her mother, Patti.
You’ll hear about different challenges these families have experienced (and overcame), talking about your diagnosis, and how MS impacts everyone. We sincerely thank our medical experts, panelists, and co-sponsors A Couple Takes on MS; Jennifer and Dan Digmann.
Watch this amazing webinar, here:
For information on our peer-led video chat MULTIPLE SCLEROSIS 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.
