Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 5, 2021
Editor’s PickShould docs make overall survival predictions – it scares a newly diagnosed man, while an old hand laughs! (rd)
Topics Discussed
High-risk PCa treatment decision; recurrence – beware of overall survival preductions; durable remission and NED; experiencing spinal collapse; Spot Radiation; scanning for recurrence; ARV110 trial experience; can you add a drug to your trial; lymphedema issues; CBC questions; picking up rib lesions; 5 yrs out when the doc didn’t give you 5; record your medical meetings; estrogen patch for hot flashes; more chemo …. & more & more; gabapentin for neuropathy; PBRT vs IMRT; going off ADT to get a scan result; …. & lots of nutrition discussed in the Chat Log!
Chat Log
Jeremy (to Everyone): 5:21 PM: https://www.fda.gov/news-events/press-announcements/fda-approves-first-psma-targeted-pet-imaging-drug-men-prostate-cancer
Ken (to Everyone): 5:24 PM: hey jake…. chemo #15 this past friday so dealing with the side effects. alk phos continued down 10 points and psa down 2
Ted Healy (to Everyone): 5:46 PM: record your meetings
Jake Hannam (to Everyone): 5:47 PM: Yes we do, Ted (this and several others)
Ted Healy (to Everyone): 5:48 PM: no, meetings with the dr
John I (to Everyone): 5:52 PM: Wow, Sylvester, that was inspirational!!!
Len Sierra (to Everyone): 5:53 PM: I agree with John – we need to hear more from Sylvester on these calls!
Jake Hannam (to Everyone): 6:26 PM: Radium 223 negates future use of lutetium?
Jake Hannam (to Everyone): 6:27 PM: Is that true?
Herb Geller (to Everyone): 6:36 PM: I don’t know Ra-223 negates anything but it doesn’t seem that promising compared to other therapies.
Rick Davis (to Everyone): 6:38 PM: radionuclide trials usually prevent particpation if you have already taken a radionuclide. check the Lu177 trials
Carl Forman (to Everyone): 6:52 PM: Thanks so much to Scott Hogan for being able to participate here tonight. Hope to see you here again. Best wishes.
Ted Healy (to Everyone): 7:06 PM: I’m sorry, have to go. thank you all!
Vanita Gaglani (to Everyone): 7:10 PM: walnuts, greens,soaked fenugreek seeds ( 1 tsp per day) real licorice roots, sunflower seeds, spearmint tea all help with hot flashes. Len Fenugreek seeds can be bought in any Indian grocery store.If you have an Indian grocery store near you they have the greens called Methi. Some of the anti carcinogenic ,anti inflammatory natural products include Turmeric, cummin seeds, cinnamon.
eric (to Everyone): 7:16 PM: is this for anti inflammatory
Carlos Huerta (to Everyone): 7:19 PM: Alpha Lipoic Acid
Vanita Gaglani (to Everyone): 7:19 PM: yes. But get real turmeric powder , not capsules.1/4 tsp each you can put all in mik and drink or in tea, warm water. I am happy to answer any questions. hello@vanitasrehab.com. These are natural anti inflammatories.
Rick Davis (to Everyone): 7:22 PM: IMRT vs PBRT side effects http://prostatecancerinfolink.net/2012/02/01/first-directly-comparative-data-question-safety-of-pbrt-vs-imrt/
Carlos Huerta (to Everyone): 7:23 PM: Get a PSMA PET to target the protons
Vanita Gaglani (to Everyone): 7:24 PM: For all treatments try to keep the bladder filled 8-10 oz of urine.
Rick Davis (to Everyone): 7:24 PM: Not necessarily true Vanita – as we heard earlier
Vanita Gaglani (to Everyone): 7:24 PM: we do not need 32 oz of fluid because most men cannot hold it.or women.
John I (to Everyone): 7:26 PM: I needed a full bladder, but I believe it was 24 ounces (though I’m small)
Vanita Gaglani (to Everyone): 7:28 PM: 24 oz is difficult to hold
John I (to Everyone): 7:29 PM: They timed it–drank it 20 min before treatment & tretament was quick.It was hard to hold only if the machine went down & I had to wait a few extra minutes
Vanita Gaglani (to Everyone): 7:30 PM: if anyone can tolerate plain yoghurt eating that helps a lot too Agreed John.
Bruce Bocian (to Everyone): 7:39 PM: please type those letters of that stanford test in the chat box, not sure I heard it correct
Rick Davis (to Everyone): 7:40 PM: 17F DCFPyl
Peter Kafka (to Everyone): 7:40 PM: 17F DCF-PYL PSMA PET CT
John I (to Everyone): 7:42 PM: Great session, thanks Rick
The Role of Estrogen-Based Hormone Therapy for Treating Prostate Cancer – Mar 29, 2021
Summary
AnCan’s Advisory Board Member, Richard Wassersug PhD, has almost 20 years of personal experience using high dose estrogen therapy to manage his recurrent prostate cancer. Dr. Wassersug is also an expert in hormone therapy; he is the lead author of ‘Androgen Deprivation Therapy- an essential guide for prostate cancer patients ane their loved ones’. And Richard has led many studies on the psycho-social aspects of hormone therapy.
In this interactive seminar, Dr. Wassersug discusses his personal experience on estrogen based therapy. He is joined by our AnCan Brains Trust, Herb Geller and Len Sierra monitoring audience quesions, as well as PCa patient and fertiltiy endocrinologist, Dr. Mark Perloe.
Chat Log
Peter Kafka (to Everyone): 5:04 PM: I have seen reference to using Estrodile in combo with Relugolix in uterine conditions to boost hemoglobin in women, For men like myself might Estrogen with Relugolix insteade of Lupron knock down my anemia?
Mark Perloe (to Everyone): 5:05 PM: Is there a role for SERMS selective estrogen receptor modulators. in dealing with prostate cancer?
Ronald Goldberg (to Everyone): 5:09 PM: For men, which serum estradiol test do you recommend: Estradiol or Estradiol Sensative? For the estradiol sensative test, what is the “Healthy Range” for a man using estradiol to mitigate the side effects of ADT?
Ronald Goldberg (to Everyone): 5:14 PM: Is monitoring serum bone turnover markers useful to monitor bone density when on ADT?
Mark Perloe (to Everyone): 5:23 PM: Does estrogen suppress adrenal androgen production. If not, what cut-off for T suppression should be the target.
Mark Perloe (to Everyone): 5:26 PM: Isn’t much of the T behavioral effect due to aroma taste activity converting T to E.
Richard Stanton (to Everyone): 5:30 PM: What are your thoughts on whether cycling monotherapy with estradiol patches, LHRH agonists, LHRH antagonists, and ARSI’s could or might avoid, inhibit, or delay castration resistance caused by adaptive or other resistance mechanisms?
Rick Davis (to Everyone): 5:36 PM: The male breast cancer patients HATE tamoxifen.
John Ivory (to Everyone): 5:42 PM: Can you talk a little more about the mechanics of wearing the patches (is it like a bandaid? where, how often you change them, Issues of it coming off in bath/swimming/shower, how the gel is used vs. the patch)?
Herb Geller (to Everyone): 5:45 PM: Randomized Controlled Trial Eur J Endocrinol . 2018 May;178(5):565-576. doi: 10.1530/EJE-17-1072. Epub 2018 Mar 16. Short-term effects of transdermal estradiol in men undergoing androgen deprivation therapy for prostate cancer: a randomized placebo-controlled trial Nicholas Russell 1 2 , Rudolf Hoermann 3 , Ada S Cheung 3 2 , Michael Ching 4 , Jeffrey D Zajac 3 2 , David J Handelsman 5 , Mathis Grossmann 3 2
John Ivory (to Everyone): 5:47 PM: Thanks, Herb. Here’s the link: https://pubmed.ncbi.nlm.nih.gov/29549104/
Patrick (to Everyone): 6:00 PM: What level does the estrogen have to be at to suppress the testosterone?
ALFRED LATIMER (to Everyone): 6:01 PM: I may be the only one here that is on estrogen. I wear three .1 patches at a time and change one patch per day. My testosterone levels and estrongen levels stay fairly consistant. I also take avodart. This combo kept my psa lees than 0.1 for almost 10years. My patches are on my upper legs Has Richard used avodart in combination?
ALFRED LATIMER (to Everyone): 6:04 PM: Could Richard repeat the discussion of not using estrogen if you have a BRAC 1 or 2 mutation.
Gary (to Everyone): 6:10 PM: When is the PATCH study likely to be done and the data published?
Herb Geller (to Everyone): 6:12 PM: Transdermal oestradiol for androgen suppression in prostate cancer: long-term cardiovascular outcomes from the randomised Prostate Adenocarcinoma Transcutaneous Hormone (PATCH) trial programme. Langley RE, Gilbert DC, Duong T, Clarke NW, Nankivell M, Rosen SD, Mangar S, Macnair A, Sundaram SK, Laniado ME, Dixit S, Madaan S, Manetta C, Pope A, Scrase CD, Mckay S, Muazzam IA, Collins GN, Worlding J, Williams ST, Paez E, Robinson A, McFarlane J, Deighan JV, Marshall J, Forcat S, Weiss M, Kockelbergh R, Alhasso A, Kynaston H, Parmar M. Lancet. 2021 Feb 13;397(10274):581-591. doi: 10.1016/S0140-6736(21)00100-8. PMID: 33581820
Mark Thompson Rehoboth Beach DE. (Private): 6:27 PM: Thank you very much for having this discussion.
Rick Davis (to Mark Thompson Rehoboth Beach DE.): 6:28 PM: pleasure Mark – hope it is helpful
Rich Jackson (to Everyone): 6:36 PM: Webinar: The TALK – Inherited Mutations Register here: https://bit.ly/2Oq2YkG Wednesday, March 31 2021 @ 8 pm ET, 7 pm CT, 6 pm MT, 4 pm PT, 2 pm HI
Rick Davis (to Everyone): 6:36 PM: registration for webinar https://register.gotowebinar.com/register/3736798432724445452
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.
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.
Eleni Efstathiou MD, PhD
Associate Professor, Department of Genitourinary
Medical Oncology, Division of Cancer Medicine,
The University of Texas MD Anderson Cancer Center
Tomasz Beer MD, FACP
Deputy Director, OHSU Knight Cancer Institute
Scott T. Tagawa MD, MS, FACP
Professor of Medicine and Urology, Weill Cornell
Medicine; Physician, NewYork-Presbyterian -Weill Cornell Medical Center
David VanderWeele MD, PhD
Assistant Professor of Medicine, Northwestern
University Feinberg School of Medicine; Medical
Oncologist, Lurie Cancer Center at Northwestern Memorial Hospital
Atish D. Choudhury MD, PhD
Co-Director of the Prostate Cancer Center,
Dana-Farber Cancer Center
