Editor’s Pick: This week’s group is dominated by U-60 men diagnosed denovo metastatic – we speak to FIVE (5)!!!!! USPSTF HEAR THAT!!! A good discussion on abi side effects … AND A HYPERACTIVE CHAT LOG!!
Topics Discussed
Misdiagnosed 1st time leads to denovo Mx Dx for U-60 man 2nd time; post-RP spread managed for 10 yrs w/o HT; 25+ yrs living with G9 advanced PCa!; Keytruda trial for MSI stable man post-olaparib; Rusty’s 1st Football game post-HT!; abiraterone side effects; blood pressure issues from 2nd lin anti-androgens; glucocosticorteroid + enz trial; enz + LHRH for another U-60 denovo Mx man; yet another U-60 denovo Mx man starts RT; enz preferred with heart disease; cancer or sarcoidosis?
Chat Log
scott (to Everyone): 5:03 PM: Sylvester how are you doing?
David Muslin (to Everyone): 5:21 PM: Nicklas Robert Pfanzelter, M.D. (89 ratings) NorthShore Medical Group 847.503.1000 Conditions Adrenal Cancer, Basal Cell Cancer (BCC), Bladder Cancer, Genitourinary Cancer, Kidney Cancer, Lung Cancer, Melanoma, Merkel Cell Cancer, Prostate Cancer, Testicular Cancer, Transitional Cell Carcinoma, Urinary Tract Cancer Procedures Chemotherapy
John I (to Everyone): 5:26 PM: genitourinary
Len Sierra (to Everyone): 5:26 PM: GU = Genitourinary Oncologist
John I (to Everyone): 5:26 PM: (GU) medical oncologist (GU Med Onc)
Joel Blanchette (to Everyone): 5:27 PM: He is close to Alicia Morgans, GU Medical Oncologist
Mark Perloe (to Everyone): 5:27 PM: Alicia is great.
AnCan – rick (to Everyone): 5:28 PM: We are getting there gents …..
John I (to Everyone): 5:28 PM: She’s my doc. very good doc, good at answering questions, taking her time
Mark Perloe (to Everyone): 5:28 PM: I’d also consider OncocyteDX liquid biopsy as up to 50% of the mutations are limited to the tumor and are not inherited.
Jerry Pelfrey (to Everyone): 5:28 PM: do not forget Proton pencil beam as a choice
Ken A (Private): 5:29 PM: advise please on under 60 group
Len Sierra (to Everyone): 5:29 PM: Lynch Syndrome
Mark Perloe (to Everyone): 5:30 PM: SBRT with ViewRay, a device which marries MRI and Linear Accelerator can get treatment for five times. Visit ViewRay.com
Ken Doyle (to Everyone): 5:31 PM: Ken Doyle Info. Age 75, mPC after prostate removal in 2010
Herb Geller (to Everyone): 5:34 PM: BRCA1 or BRCA2
Jake Hannam (to Everyone): 5:34 PM: BRCA mutation
John I (to Everyone): 5:36 PM: I also had a good experience with Russell Szmulewitz at UChicago too–had to change because of insurance network changes
Carl Forman (to Everyone): 5:41 PM: In case I don’t have a chance to speak tonite, I wanted to throw out to the group if anyone has had experience with Keytruda, which has been dicussed by my Oncologist as a clinical trial treatment option for me.
AnCan – rick (to Everyone): 5:41 PM: Big subject Carl – should be discussed.
Ken A (to Everyone): 5:42 PM: Carl – Paul has advise me that it was in my future…
John I (to Everyone): 5:45 PM: active surveillance
Jake Hannam (to Everyone): 5:45 PM: active surveillance
Jake Hannam (to Everyone): 5:47 PM: Axumin
Jake Hannam (to Everyone): 5:49 PM: PSMA
scott (to Everyone): 5:52 PM: gentlemen: I have to go at 6 pm to make dinner….see you on another call
Ken A (to Everyone): 5:53 PM: hey Scott lets try that lunch once again.
Peter Kafka (to Organizer(s) Only): 6:00 PM: Wow! A 30 year journey as a GL-9 with BRCA +, A poster man! I hope I get half that kind of run.
Ken A (to Everyone): 6:02 PM: Dang I agree 100 percent…..
Peter Kafka (to Organizer(s) Only): 6:34 PM: Just letting you all know that I spent 2 hours on the phone with my buddy Mr. Sharma in Delhi, India the other day. This was my 2nd round with Del Service from India. I think we got my sound problems resolved this time. I now have a 1-year service contract and Sharma recommended that I check in at least every 2 months if not every month for a “tune up”.
AnCan – rick (to Everyone): 6:40 PM: Theraworks
John I (to Everyone): 6:42 PM: spelled theraworx
AnCan – rick (to Everyone): 6:42 PM: tx John
Jeffrey Bates (Private): 6:43 PM: Thanks John
Jeffrey Bates (Private): 6:54 PM: who is the balding man with glasses an grey/black goatee. he is sitting on couch with blue blanket behind him and a window
AnCan – rick (to Jeffrey Bates): 7:02 PM: John Ivory also young like you; in Chicago.
John I (to Everyone): 7:02 PM: Yes–you saw it?
AnCan – rick (to John I): 7:03 PM: Please connect with Jeff B
Editor’s Pick: Brain fog is a familiar subject to many who follow our group … today we pick it apart!
Topics Duscussed
Clinical trial ins & outs; lymphedema, edema and acupuncture; PSMA scan availability; germline mutations; colonoscopies and anaesthetic; mangaing progression with spot SBRT; combating brain fog; port installation; SBRT radiation to the gland; PSA nadir; abi, enz and hypertension..
Chat Log
John I (to Everyone): 3:35 PM: Haha, thanks–it’s the sweatshirt for the cold Chicago winter 🙂
John I (to Everyone): 3:37 PM: It’s FANTASTIC right now. Sitting outside because there will be few days (or hours?) left that are warm
John I (to Everyone): 3:38 PM: Nice fall colors too–will probably peak in the next week
Len Sierra (to Everyone): 3:38 PM: I have the sweatshirt, too. Very warm and soft. Nice job, Peter and Jeffrey, his son.
Lou (to Everyone): 3:55 PM: going to conference on ui and ed @7
Peter Kafka (to Everyone): 4:03 PM: I have two sweatshirts in my closet and have to wait until February before the weather is cold enough to wear them here on Maui.
Rusty (to Everyone): 4:39 PM: Complete Fall in NH, peak colors this weekend. Snow in the mountains later this week. Our 8 weeks of summer were nice though.
Editor’s Pick: 54 yr. old man w. denovo metastatic disease and significant anemia – is it all due to prostate cancer.
Topics Discussed
Denovo metastatic Dx with very significant anemia; 3-7 day break in PARP to see if it alleviates side effects; abdominal hernia; blood clots from PARP; switching to abi to avoid enz side effects; returning from 24 months HT; SPOP mutation – docetaxel resistance; chemo reduces PSA; heartburn/GERD & abi; Axumin & Insurance; glucocortisoid trial; intermittent hormone therapy
Chat Log
Rich J : 3:41 PM: Have a lymph node needle biopsy scheduled for 22 Sept, radiologist choice of location. Was interested in advice on recovery, but, don’t expect anything unusual. Tracy needs the time. No time for me, thanks.
John I. (to Everyone): 3:44 PM: Tracy, this is a good resource for diet & exercise, esp. the guide you sign up for (free) https://www.pcf.org/patient-resources/living-prostate-cancer/
AnCan – Rick (to Rich J): 3:47 PM: Let’s ask other guys about lymph Bx Rich J (Private): 3:47 PM: I have to leave in about 10 minutes to support my local group.
Rich J (Private): 3:49 PM: CT guided needle biopsy, left groin area, middle ansthesia, Brenda has to drive, but I won’t be out. I be fine. 🙂
John I. (to Everyone): 3:51 PM: Tracy, my doc let’s me tape our conversations with my phone in case I miss anything in my notes
Herb Geller (to Everyone): 4:26 PM: https://www.urotoday.com/conference-highlights/asco-2019-annual-meeting/asco-2019-prostate-cancer/113079-asco-2019-suppression-of-testosterone-production-using-abiraterone-acetate-with-or-without-androgen-deprivation-therapy-in-metastatic-castration-resistant-prostate-cancer.html
AnCan – Rick (to Len Sierra): 4:28 PM: David — abi works differently to the androgen blockers. Every man responds differently – hard to know how you would respond.
AnCan – Rick (to David Muslin): 4:28 PM: David — abi works differently to the androgen blockers. Every man responds differently – hard to know how you would respond.
David Muslin (Private): 4:29 PM: Thanks Rick. I’ll give it a try and we’ll find out.
Editor’s Pick: Tough one this week – a toss up between treatment options for men with recurrent disease …. and finally taking a drug holiday after 3+ years! rd
Topics Discussed
PCRI Virtual Conference 2020; chemo edema disappears overnight; Covid Test; alkaline phosphatase discussed; recurrence treatment options for two of our guys; after 3 years of success – drug holiday!; treating the primary for metastatic men; available PSMA screening trials; starting ADT
Chat Log
AnCan – Rick (to Everyone): 3:08 PM: 877 582 7011 + GtM Support
AnCan – Rick (to Everyone): 3:20 PM: To register for PCRI ….. https://pcri.us7.list-manage.com/track/click?u=e61bab2d681f6500ca8a92f0e&id=ccc38b0e20&e=27da33585f
AnCan – Rick (to Everyone): 3:39 PM: Dennis M’s trial – https://www.clinicaltrials.gov/ct2/show/NCT03437941
AnCan – Rick (to Everyone): 4:05 PM: NGS new rules ….. https://ancan.org/much-excellent-news-from-foundation-medicine/
Len Sierra (to Everyone): 4:14 PM: Trial at Carbone Center: PSMA-based 18F-DCFPyL PET/CT and PET/MRI Pilot Studies in Prostate Cancer Brief Summary: The overall goal of this research is to validate and develop a non-invasive imaging biomarker of prostate cancer detection, progression, and recurrence. Development of such a biomarker may be useful to differentiate indolent from aggressive prostate cancer phenotypes allowing for selection of an appropriate risk adaptive therapy. Principal Investigator: Steven Cho Sex(es): Male Age: 18 Years and over
Rich J (to Everyone): 4:17 PM: Imaging Study to Investigate Safety and Diagnostic Performance of rhPSMA 7.3 (18F) PET Ligand in Suspected Prostate Cancer Recurrence (SPOTLIGHT)
Jeremy (to Everyone): 4:58 PM: UCLA has increased their price to $3K /Users/jeremylew/Desktop/Screen Shot 2020-09-01 at 4.57.31 PM.png
Ken A (to Everyone): 4:59 PM: thanks Jeremy….
Ken A (to Everyone): 4:59 PM: looking at the trial UCLA has….
Jeremy (to Everyone): 4:59 PM: Tried to show the screenshot, but it didn’t post. BUt the price they gave me last week was $2977
Editor’s Pick: Other than our discussion about therapeutic benefits of using a chain saw … the diverse effect of enzalutamide on different men is evident this week. And wait to the end to hear how important it is to “Be Your Own Best Advocate!”
Topics Discussed
Recurrence complicated by urethral strictures; are PSA readings during chemo impacted by the cell cycle?; hemoglobin anxiety & MCHC; PSA trends down afer spot radiation; use the same lab for all tests!; AS vs surgery … for a kidney cyst!; access Medicare if you are on SSDI; Xtandi hurts QoL for some men … but not others; doctor wants to treat suspicious lesion in newly Dx man – without checking first if metastatic!
Chat Log AnCan
Rick (to Everyone): 3:27 PM: Does early salvage radiaiton save lives? https://prostatecancerinfolink.net/2015/01/26/does-early-salvage-radiation-save-lives/
Peter Kafka (to Everyone): 3:51 PM: DR. Feng at UCSF is the top Rad Onc; he came from Michigan and does considerable research
Peter Kafka (to Everyone): 4:59 PM: Indiana Univ has some Ga68 trails.
AnCan – Rick (to Everyone): 4:59 PM: Next Month ….. 1st and 3rd Tuesday …. NOT 2nd & 4th
AnCan – Rick (to Everyone): 5:00 PM: clinicaltrials.gov
Shamsul Chowdhury (to Everyone): 5:02 PM: Anyone there has any experience of Proton beam therapy! Thanks
Jake Hannam (to Everyone): 5:04 PM: Make the Most From the Internet https://www.youtube.com/watch?v=UdSW86R8LsE&list=PLDlL6phvnOTyCynAKkOUKPMhFKaKFx
