Last night Invitae and the National Society of Genetic Counselors (NSGC) honored our amazing Advisory Board Member and Genetic Counselor, Lindsey Byrne, as one of the 14 Finalists for the Genetic Counselor of the Year Award during the National Society of Genetic Counselors Annual Conference in Nashville, TN.
While Lindsey was not selected amongst the top 3, both we and she were honored Lindsey was invited to the Awards Ceremony. Nominated by our AnCan Advanced Prostate Cancer Group regular, Frank Fabish, who seeks his care at The Ohio State The James Comprehensive Cancer Center where Lindsey works as a Counselor and Professor, Frank and his wife Gail have benefitted and much enjoyed their consults with Lindsey. She is one of the very few genetic counselors who specializes in working with genitourinary and prostate cancer patients. Lindsey sent us a pix from the Awards Ceremony that has our Star in the foreground with nominator and nominee behind!
Lindsey has hosted and appeared in AnCan webinars as you see below. She also LOVES promoting our cause!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Editor’s Pick: Severe side effects – a “Lupron Frankenstein” and an abdomen swollen by chemo – plus a surprise case of shingles. (bn)
Topics Discussed
Newcomer from northern Michigan finds he’s 5+4; shingles brought on by ADT?; end of radiation and a steak dinner; benefits of pelvic floor therapy; Lupron turns a newcomer’s life upside down; are Orgovyx and darolutamide chemotherapy? ; mini-poll on hot flashes: who uses what?; putting chemo on pause after success; self-advocating finally gets him Pluvicto; “what is chemo?” revisited; funny-smelling stool following chemo; chemo abdominal swelling diagnosed as ascites — he’s now on Pluvicto and improving; end-of-life discussions; gabapentin for neuropathy leaves him loopy; latest scan shows 30 bone mets gone.
Chat Log
Richaed Wassersug to Everyone 6:36 PM
Herb,
Richaed Wassersug to Everyone 6:36 PM
Can you put the ADT and Herpes ref here?
Herbert Geller to Everyone 6:37 PM
Andrologia . 2018 Mar;50(2). doi: 10.1111/and.12863. Epub 2017 Aug 8. Increased risk of a herpes zoster attack in patients receiving androgen deprivation therapy for prostate cancer F J Wu 1, L T Kao 2, S Y Sheu 1, H C Lin 3 4, S D Chung 4 5 6
Bob G to Everyone 6:37 PM
I had shingles at age 30 due to stress.
Paul Freda Lake Worth FL to Everyone 6:41 PM
Stan How is everything going with you ? Any new treatments ? PSA stable ? I am smae except for a spot on my Pancreas. Doc says its stable and not likley to become cancerous. Hope he is right. Paul Freda AEPi 1969
Steve Roux, Elk Rapids, MI to Everyone 6:44 PM
Hey guys, here is the clinical trial info – NCT#04513717 Cancer Research Consortium of West Michigan NRG-GU009, “Parallel Phase III Randomized Trials for high risk prostate cancer evaluating intensification of concurrent therapy for higher genomic risk with radiation”
Herbert Geller to Everyone 6:54 PM
Here is more information on the trial by the NRG:Parallel Phase III Randomized Trials For High Risk Prostate Cancer Evaluating De-Intensification For Lower Genomic Risk and Intensification of Concurrent Therapy for Higher Genomic Risk with Radiation (Predict-RT*) *Prostate RNA Expression/Decipher To Individualize Concurrent Therapy with Radiation Principal Investigator Paul L. Nguyen, MD, Co-Principal Investigator(s) A. Oliver Sartor, MD
Steve Roux, Elk Rapids, MI to Everyone 7:07 PM
My brother David, with ALS, was given a weekly ADT shot, NOT Lupron, which gave him these same symptoms I hear him saying. David quit the weekly shots just to have some level of normal quality of life.
Joe Gallo to Everyone 7:12 PM
len@ancan.org
Joe Gallo to Everyone 7:12 PM
embrwave
Bob G to Everyone 7:13 PM
I have a question, but have to step out for 5 – 10 min.
Steve Roux, Elk Rapids, MI to Everyone 7:14 PM
Guys, THANK YOU for allowing me to sit in for this. I will be back for future meetings! But I need to go attend another meeting!
Julian Morales – Houston to Everyone 7:38 PM
And many more!!!!
AnCan – rick to Everyone 7:40 PM
Thank you all
AnCan – rick to Everyone 7:50 PM
Beginners Guide to the End, BJ Miller MD and Shoshana Berger
Frank Fabish Columbus OH to Everyone 7:56 PM
Got to go guys. Thanks for the updates. I see my Doc next Tuesday for Labs and Exam.
Editor’s Pick:Whether the word’s concordant or congruent, if your PSMA and CT scans don’t match up, talk carefully with your Provider if you’re a good candidate for Pluvicto! (rd)
Topics Discussed
Make sure your PSMA and Full CT scans are concordant .. or is it congruent??; new lesions appear in Pluvicto follow-up scans; is BAT an option to follow Pluvicto?; when best to start Tx on recurrence; starrting IHT; liver cyst shows up on an Axumin scan; tear duct issues from chemo; Pluvicto availability; does ADT control DHT – dihyydrotesterone?
Chat Log
Jim Marshall, Melbourne, FL to Everyone 06:28 PM Concordance – Agreement or consistency
Bob G to Everyone 06:42 PM Took about 11 days before I felt back to normal. Easier how? So, I’m done (for now) with chemo. I retry abiraterone at 1/2 dose in another 10 days & will see. Scans in early Dec & then see Dr.
Jim Marshall, Melbourne, FL to Everyone 07:19 PM For you Florida guys, you can track and predict storms, hurricanes, etc with the Ventusky weather model out of the Czech Republic at. www.ventusky.com you Gulf states can use it too along with East & West Coast. It predicts weather all over the world.
Ben Nathanson to Organizer(s) only 07:31 PM mary-ellen taplin?
george rovder arlington virginia to Everyone 07:50 PM Thank you all. Good Night.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 1, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Editor’s Pick: Chemo robs him of breath — but he’s determined to work through his bucket list. (bn)
Topics Discussed
PSA of 3.1 to drops to 1.5 after darolutamide; who gets darolutamide for free?; on chemo and struggling to breathe; how often should I request sequencing?; why can’t my tumor be spot-radiated?; get sequencing on a rare testicular metastasis; PSMA PET at 0.2?; establishing formal qualifications for PSMA PET interpretation; another report of major fatigue on darolutamide — but maybe it’s a drug interaction; expat’s sticker shock at U.S. drug pricing; radiation fatigue can’t stop his climbing trip; break for a little toilet humor; interpreting a p53 mutation; a pharmacy offering lower-cost drugs; is bone biopsy as painful as they say?
Chat Log
David Muslin 6:40 PM Cancer genome sequencing is the whole genome sequencing of a single, homogeneous or heterogeneous group of cancer cells. It is a biochemical laboratory method for the characterization and identification of the DNA or RNA sequences of cancer cell(s).
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 25, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups: Men (Only) Speaking Freely …1st & 3rd Thursdays @ 8.00 pm Eastern AnCan Barniskis Room Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern AnCan Barniskis Room
Editor’s Pick: We hear evidence Pluvicto may be shortlived. And before you start it, be sure all your lesions express PSMA! … and higher levels of corticosteroids may reduce PSA – who knew?(rd)
Topics Discussed
How durable is Pluvicto? concordance required for Pluvicto success; incontinence during salvage radiation; are PSMA scans viable at 0.2 PSMA; Medicare covers DEXA scans; Dr. A confirms Kwon treatment – and orders NGS; extened use of prednisone may cause cataracts … or is it aging?; and that same pred may reduce your PSA!; oral pain issues from chemo.
Chat Log
Carl Forman to Everyone 03:21 PM Dr Kwon posted a video 2 weeks ago, thru PCRI, titled PSMA and LU177 in 2022 https://www.youtube.com/watch?v=bwUJJP614f8 May have useful info.
Len Sierra to Everyone 04:03 PM NCCN = National Comprehensive Cancer Network
rd to Everyone 04:26 PM From Bob McHugh …. ‘What does “avid” mean?’
Len Sierra to Everyone 04:27 PM Active lesion (Ed: Lesion expressing PSMA)
TonyFig to rd 05:07 PM I started 30 day Firmagon two weeks ago. Dr. VanV ordered monthly blood/testosterone/PSA 3 days prior to each injection. No side effects this far with Firmagon. Wondering if I should stay with Firmagon monthly or switch to Lupron. Thinking of staying with Firmagon since no adverse reactions at this time. Alan Babcock to Everyone 05:10 PM I have to go. Thanks for your help.
rd to TonyFig 05:11 PM Benefit of Lupron is that you can get a 3 or 4 month shot rather than monthly. Also some folks don’t like the belly shot.
Peter Kafka – MN to Everyone 05:13 PM Good night guys, Keep fighting the fight.
Jim Marshall, Alexandria, VA to Everyone 05:19 PM Here is the writelup I found Prednisone: It has been shown taking 10mg a day, can decrease the PSA result by more than 50% in many patients with hormone-refractory progressive Prostate Cancer. “In patients with serum testosterone castrate levels (less than 20ng/ml), hormone-refractory prostate cancer is defined as 2-3 consecutive rises in prostate-specific antigen (PSA) levels 12 obtained at intervals of greater than 2 weeks and/or documented disease progression based on findings from CT scan and/or bone scan, bone pain, or obstructive voiding symptoms.” So, getting this straight, if one does not have Prostate Cancer, then prednisone has no effect. But if Prostate Cancer is present, then the PSA test result is one half of its normal value. (Ed: not necessarily – PSA may also be half in all men taking pred, but they didn’t look at that!)
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
Our special October guest was fabulous Kelle Jolly!
Kelle, “The Tennessee Ukulele Lady”, is an accomplished music entertainer and educator. She shares musical stories and songs from the South. Her repertoire includes traditional African American music of blues, jazz, spirituals, and folk. Kelle is a graduate of South Carolina State University, where she studied Music Education with Concentrations in Voice. Kelle is the 2011 Mountain Soul Vocal competition winner and the Knoxville Community Shares 2013 Artist of the Year.
Kelle Jolly is the host of Jazz Jam, Knoxville’s only vocal jazz radio show, on WUOT 91.9FM. She is the founder of the Women in Jazz Jam Festival and Ukesphere of Knoxville. Kelle and her saxophonist husband, Will Boyd, have served as ambassadors of jazz from Tennessee to Japan. They are Knoxville MLK Commission Artist Award recipients. In 2021, the City of Knoxville proclaimed July 21st, “Kelle Jolly and Will Boyd” Day in Knoxville, TN. Kelle Jolly is currently a graduate student in the Communication and Storytelling Studies program at East Tennessee State University, pursuing her Master of Arts degree.
Kelle told personal stories of loss and self-care. Loss: A baby story normally ends with a baby. But what happens when it doesn’t? “Losing a baby changes the story you tell about yourself as a woman. I saw myself as a sad failure. Not only did I lose a baby, I lost the ability to ever be pregnant again. My pregnancy loss left me feeling hopeless until l I was asked to conceive something else.” Self-care: Every year, the Women in Jazz Jam Festival has a theme. “I can’t always tell if the theme is a result of the festival planning experience or if the festival planning is shaped by the theme. But the year of the ‘Hearts’ theme was too relevant and real.”
Art Class was back in session with Hannah teaching us about fall trees, including fun add ons to your fall escape like owls, squirrels, and a swing.
Anything goes here! While markers were the main medium, we heard about coffee, soy sauce, and gum as potential art supplies.
You’ll need
Paper
Your choice of medium – markers, pen, pencil, colored pencils, paint, watercolor pencils, anything that can mark.
This art class was also in loving honor of our AnCan art friend, George Degnon, and we are holding his family tightly in our hearts. May his memory always be a blessing.
To all our art enthusiasts! We have yet another art class for you TOMORROW!!
10/20/22 8pm ET / 5pm PT
Our Summer of Art classes were such a huge hit that we just had to keep them going. Though we won’t be able to send everyone free supplies this time, at least we are using some of the things we’ve used in previous classes.
All you will need for this project tomorrow is paper and markers – that’s it! Browns, yellows, oranges, purples, reds, a blue or two. I happen to use the Crayola 20pc set. You can also use colored pencils, crayons, and anything else you can think of. There are really no set rules, though. We can help you work with what you have so you won’t be left in the dark.
Please use THIS LINK HERE to register. You’ll get the Zoom link tomorrow before class!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 17, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Editor’s Pick: Is it prostate or lung cancer?? Plus a great discussion on Bipolar Androgen Therapy. Read Drs. Denmeade and Antonarakins BAT Patient Guide https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9313844/ (rd)
Topics Discussed
After 5 yrs on abi, consider a change in Tx and docs; 1.8 PSA nadir on abi & TAK-700 may require another Tx; PSA post RP comes back at 1.79; Dr.E gets full marks … again; Spot RT complements chemo to reduce PSA; Procrit – pros/cons; BAT to follow disappointing Pluvicto results; adjuvant RT now vs direction from scans and early salvage RT; PCa or NSCLC – confusion reins; tips on starting chemo; time for an Axumin scan; handling sciatic pain while on blood thinners.
Chat Log
George Rovder Arlington VA (to Everyone): 5:27 PM: Genito-Urologic Medical Oncologist
AnCan – rick (to Organizer(s) Only): 5:43 PM: Len – what’s the TAK-700; remember from years ago
Ben Nathanson (to Organizer(s) Only): 5:43 PM: orteronel It worked, just not well enough to meet the goals
Len Sierra (to Organizer(s) Only): 5:43 PM: Yes, orteronel. It’s similar to Abi
AnCan Barniskis Room/John (to Organizer(s) Only): 5:43 PM: could he have been on placebo? was there a placebo arm?
Len Sierra (to Organizer(s) Only): 5:44 PM: I think he said he took it for 7 years, so doubtful that it was placebo.
Peter Kafka – MN (to Everyone): 5:45 PM: Under 60 group candidate
AnCan Barniskis Room/John (to Organizer(s) Only): 5:45 PM: Oh yeah–must have been given the option to continue after study ended.
Mark Thompson (to Everyone): 5:47 PM: You are not alone Aaron, I was diagnosed at the age of 47 also with bone mets.
AnCan – rick (to Ian G (AZ)): 6:15 PM: The field is moving so fast; that’s why you have to have a GU med onc!! Deciding on the best Tx is difficult.
Ian G (AZ) (Private): 6:21 PM: CCCN has a lot of MOs. Is there noone there that can fill Dr V’s shoes.
Frank Fabish Columbus OH (to Everyone): 6:22 PM: Got to go guys. Thanks for the discussions.
AnCan – rick (to Ian G (AZ)): 6:26 PM: You will need a specialty GU med onc, Ian. You are better off at a Center of Excellence not a community practitoner. Dr. V z”l was a rare exception. Tony Crispino may have confidence in someone in LV so check with him but I would strongly recommend going to a Center of Excellence.
Julian Morales – Houston (to Everyone): 6:34 PM: Need to leave – It’s been a long day for me. Will catch you next week!
Ian G (AZ) (Private): 6:35 PM: Rick, this guy at CCCN is a GU MO: Oscar B. Goodman, Jr., MD, PhD. He has really good reviews.
Carl Forman (to Everyone): 6:37 PM: Denmeade is at Johns Hopkins in Baltimore.
AnCan – rick (to Ian G (AZ)): 6:39 PM: Like I say, Ian, if me, I would go to a Center of Excellence and have them work with a local person.
Ian G (AZ) (Private): 6:45 PM: Thanks Rick, I will email Tony right away.
AnCan – rick (to Ian G (AZ)): 6:46 PM: If me, I would see Alan Bryce at Mayo along with a local person.
George A Southiere Jr (to Everyone): 6:51 PM: Good to see everyone. Very tired these days so need to sleep. Goodnight fellows
George Rovder Arlington VA (to Everyone): 6:52 PM: Thank you gents. Goodnight.
Cal Van Zee (to Everyone): 6:53 PM: I have notes from a Nov ’21 webinar on BAT. Mike Schweitzer at SCCA uses BAT and has research on it.
Joe Gallo (to Organizer(s) Only): 6:54 PM: FYI. 3 mos after stop Orgovyx T was at 122
AnCan – rick (to Everyone): 6:55 PM: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
Ian G (AZ) (to Everyone): 6:57 PM: Thanks for the warm welcome. Been a long day. See you next time!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Oct 11, 2022
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 per month prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s Pick: Drug holiday…but what about that rising testosterone? (bn)
Topics Discussed
Longtime friend remembers John Birch; a thank-you from John’s wife; two more passings — George Degnon and Dave Myers; Dr. E patient wonders what’s next after discontinuing abi; newcomer gets care downstate when Dr. Antonarakis is in his backyard; mysterious red marks following chemo; why is genetic testing useful?; jitters as testosterone rises on a drug holiday; dosing at mealtime to economize on abi; PSMA ordered but PSA is undetectable; helping a new BRCA patient get help at UCSF.
Chat Log
Dennis McGuire (to Everyone): 6:04 PM: she is on
AnCan – rick (to Everyone): 6:59 PM: Dr. Emanuel Antonarakis https://med.umn.edu/bio/hematology-oncology-and-transp/emmanuel-antonarakis
Jim B (to Everyone): 7:27 PM: Hi Bob, I think I am feeling much better today. BTW the chemo sores appeared almost immediately in my case and went away very soon after the steroid cream. The name of the cream is Clobetasol Propionate Cream.
Len Sierra (to Everyone): 7:37 PM: Low dose Abi reference:
Len Sierra (to Everyone): 7:37 PM: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5941614/
Herbert Geller (to Everyone): 8:00 PM: Gotta go. See you all on Monday.
AnCan – rick (to Organizer(s) Only): 8:00 PM: Great job tonight getting through everyone, Peter.
Len Sierra (to Everyone): 8:02 PM: Chromogranin A (CGA) and neuron-specific enolase (NSE) levels are biomarkers for NEPC. Also, they are synaptophysin positive. DLL3 (Delta-like Ligand 3) is positive in 76% of NEPC.
While Lindsey was not selected amongst the top 3, both we and she were honored Lindsey was invited to the Awards Ceremony. Nominated by our AnCan Advanced Prostate Cancer Group regular, Frank Fabish, who seeks his care at The Ohio State The James Comprehensive Cancer Center where Lindsey works as a Counselor and Professor, Frank and his wife Gail have benefitted and much enjoyed their consults with Lindsey. She is one of the very few genetic counselors who specializes in working with genitourinary and prostate cancer patients. Lindsey sent us a pix from the Awards Ceremony that has our Star in the foreground with nominator and nominee behind!
Lindsey has hosted and appeared in AnCan webinars as you see below. She also LOVES promoting our cause!
