Hi-Risk/Recurrent/Advanced PCa Video Chat, Dec 5, 2022
Back after a two-week holiday hiatus, and Boy – do we have a lot of good action for Recording Participants!! Listen on …
Just a heads-up everyone – mark on your calendar that Dr. E may be joining us on Dec 19 – we’ll start a little early!
December heralds our one and only Fundraising Campaign of the year. All on the AnCan distribution already received our ‘ask’ that also includes AnCan highlights from 2022. We ask you to consider a donation based on the support gained listening to these recordings. Read our letter at https://us14.admin.mailchimp.com/campaigns/show?id=7976018
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/
Editor’s Pick: AnCan surfaces a significant Orgovyx side effect … and what else but anxiety comes up again throughout! (rd)
Topics Discussed
Success with Keytruda/pembro; anxiety recurrence; pain, ,opiates causes question – cancer or spinal deterioration? …and more anxiety; significant Orgovyx interaction with PPI drugs; when to start RT on recurrence post RP; hot spot in gland should trigger action; ARV-766 trial vs restoring blood counts for more chemo and Pluvicto; restarting abi; all steady; hot flashes; more of Keytruda/pembro – may take time; foamy gland PCa stable
Chat Log
Peter Kafka – MAUI to Everyone 05:56 PM I can only be with you for the first hour. Sorry,
Peter Kafka – MAUI to Everyone 05:59 PM Phone in: 646-749-3129 code: 222583973##
Alan Babcock to Everyone 06:00 PM 1 866 890 8931 support number
Tom to Everyone 06:03 PM New person, thanks for hosting!
eric to Everyone 06:14 PM Hello everyone
George Rovder Arlington VA to Everyone 06:45 PM Feldenkreis, as recommended by Larry Fish https://feldenkrais.com/
Herb Geller to Everyone 06:54 PM pantoprazole
Joe Gallo to Organizer(s) only 06:57 PM Is that in the same family as Prilosec
Frank Fabish Columbus OH to Everyone 07:56 PM Thanks for hearing me. Onward and upward. See you all next week.
Tom to Everyone 08:04 PM Thanks for letting me listen in. I was diagnosed last year after months of back pain, metastatic PC with “innumerable” skeletal tumors. Degarelix worked for a few months but pain returned and PSA back up to 15+, doubling in a month or two. Next appt this week with oncology through UCLA to discuss next treatment options. Mostly focused on reducing pain.
Me to Everyone 08:04 PM Who are you seeing at UCLA?
Tom to Everyone 08:05 PM Dr melody Benjamin, out of the Ventura office
Me to Everyone 08:06 PM Is she a GU med onc?? I think not.
Tom to Everyone 08:06 PM Ok
Pat Martin to Everyone 08:07 PM Thanks for the help and input
Me to Everyone 08:07 PM Go to see Rettig at UCLA Westwood
AnCan can’t say this enough times … nothing gives us more pleasure than when our Peeps meet up. Our survey last year found that some 35% of our participants make new and lasting friendships outside our groups. That’s our gift to you as well as to ourselves!
Late last month two of our sterling Volunteers met up. Capt. Jim Marshall (USAF) headed south from Alexandria, Virginia to spend a month in Melbourne, Florida, home of our Active Surveillance Prostate Cancr Moderator, Garry Tosca. Here’s what Captain Jim had to say about their lunch meeting:
During my visit down in the Melbourne, FL area in November I got to meet up with fellow AnCan Vet, Garry Tosca and his lovely partner, Trish, for lunch on the edge of the Indian River at the Old Fish House. Both of us are Vietnam Vets where my time was spent in Saigon at Tan Son Nhut Air Base in Computer Operations.
Garry did less than two years in the Army with just enough time to be in the thick of fighting in numerous locations in Vietnam. He is my hero earning the National Defense Service Medal (received by all of us just for joining or drafted & affectionately known as the “pizza stain,”), Vietnam Service Medal with a couple of Bronze Stars for fighting in Campaigns, Republic of Vietnam Campaign Medal and the prized Bronze Star.
Bronze Star Medal — a highly respected military decoration given to service members who distinguish themselves while engaged in action against a foreign force
I do understand his most coveted award is the Combat infantry Mens Badge.
The Combat Infantryman Badge (CIB) is a United States Army military decoration. The badge is awarded to infantrymen and Special Forces soldiers in the rank of Colonel and below, who fought in active ground combat while assigned as members of either an Infantry or Special Forces unit of brigade size or smaller at any time after 6 December 1941.
I did learn something I had never thought about concerning VA Disability Ratings associated with Prostate Cancer (PC). With me and the StageIV Metastatic PC plus Vietnam, it is an automatic 100% Permanently Disabled Rating; a real no brainer with a minimum of paperwork needed. Garry is on Active Surveillance now for a number of years, is also considered 100% Disabled even though he is Gleason = 6(3+3).
It now makes sense for when a Vet is undergoing treatment, he/she is rated at 100% until some kind of resolution either one way or the other. Therefore documenting in excruciating detail all that happens during Active Surveillance can be shown as undergoing treatment, actually “continual treatment“. Hopefully he will stay at 100% Temporarily Disabled for the duration even if his PC never goes beyond Gleason 6.
I want to thank Garry & Trish for being such gracious hosts and when I return in the Spring, hopefully we can get caught up on things.
Just a reminder that AnCan now runs a Veterans’ Health Navigation Support Group, attended by both Jim and Garry and expertly moderated by Capt Joe Gallo (USMC). The group includes a vast amount of experience including administrators and physicians who worked in the VA for decades. It can help with everything from ratings and benefits to treatment. We also have folks using TriCare adn Tricare for Life. Sign up to receive a Reminder at https://ancan.org/contact-us/
Now here’s an uplifting pancreatic cancer story for you.
Jay Sandler of Canopy Cancer Collective celebrates almost a decade as a pancreatic cancer survivor. He later went on to be our moderator for our support group.
Read his story at the Hirshberg Foundation about what must have felt like a never-ending treatment journey.
Pancreatic Cancer Awareness Month is over, but there’s still plenty of reason to celebrate stories and celebrate survivors. If you or a loved one happens to also be diagnosed with pancreatic cancer, drop into one of our group meetings. We meet on the 4th Thursday of each month at 8 pm ET / 7 pm CT / 6 pm MT / 5 pm PT in the AnCan Schmier Room.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 21, 2022
HAPPY THANKSGIVING TO ALL -… we have much gratitude at AnCan – especially for the love and support from our participants! All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: What’s the right type of radiation therapy? And you gotta love our live interaction to help Dr. Jack decide! (rd)
Topics Discussed
chemo causes minor BP/heart issues; off again, on again pembro to be resumed; MMR and HRR mutations defined; AnCan advises against self-dosing; bladder Botox and hematuria; starting IHT; GU med onc offers 3 treatment options … AnCan’rs opine; more IHT starting; RT treatment to commence- but is the right type of radiation?; Bayer approves darolutamide support; HT kicks in for another happy Dr. E camper; Herb experiences pain, but is it cancer realted?; are we seeing more or less telemed visits?
Chat Log
Frank Fabish Columbus OH to Everyone 06:02 PM Have my two month follow up and blood draw with my oncologist at the James tomorrow afternoon. Looking for good results.
Dennis McGuire to Everyone 06:05 PM Rick, Like the Background !
Joe Gallo to Organizer(s) only 06:42 PM SHARED Decision making
Me to Everyone 06:59 PM desmopressin – ‘Nocturna’
AL L Ft Lauderdale to Everyone 07:07 PM Just saw the bill for the first Docetaxel infusion. List prices. Docetaxel $4141. Neulasta $46749. Really? Haven’t seen what the approved by Medicare amounts are yet. Total $60000. Neulasta is really that expensive?
Me to Everyone 07:08 PM Yes Al …. and a lot of hospitals won’t give it or use a generic.
Alan Moskowitz to Everyone 07:09 PM nocturna is a brand name for a quick dissolve desmopressin tablet. More expensive and may not be covered by insurance. The generic tablet is very inexpensive.
Aaron Wertlieb DC to Everyone 07:18 PM Thanks guys have a good night
Peter Kafka – MAUI to Everyone 07:20 PM I just looked up my Medicare billing for 2020 which covered my Chemo treatment reimbursements. This was here in Hawaii, but my Nulasta was billed at $19,445. per shot. Medicare paid $2,226.91 and my secondary plan covered $556.73 Strange that you are seeing $60,000 bills. I guess that is why I don’t live in Florida. Correction: I see your Nulasta is only $46,749. But again, mine was only $20,000 in 2020.
Len Sierra to Everyone 07:23 PM Peter, I think he was including the cost of the chemo in addition to the Neulasta.
Me to Everyone 07:21 PM How do you all like the interactive?
Norm Pollock to Everyone 07:22 PM Yes
Len Sierra to Me 07:22 PM Fun!
Frank Fabish Columbus OH to Everyone 07:23 PM like the interactive
Steve Roux, Elk Rapids, MI to Everyone 07:23 PM Interactive is great
James Davidson (Houston) to Everyone 07:24 PM Interactive is engaging and entertaining
jeff wood to Everyone 07:27 PM I have to go early. Happy TG to all
Alan Moskowitz to Everyone 07:28 PM Guys, need to leave now. Happy Thanksgiving to all.
Joel Blanchette Reston, VA to Everyone 07:33 PM I talked with Dr. E today and she said that she had just returned from Canada lecturing on the FDG PET and the PSMA from some research done by the Aussies. Does anyone know where she was in Canada and is it available on You Tube or someplace else?
TonyFig to Everyone 07:42 PM What is the name of the recommended radiation? SDRT?
AL L Ft Lauderdale to Everyone 07:43 PM Thanks to all. I need to leave tonight. Happy T Day!
Jim B to Everyone 07:44 PM SBRT – stereotactic beam radiation therapy
Frank Fabish Columbus OH to Everyone 07:51 PM got to leave guys. Happy Thanksgiving all.
Steve Roux, Elk Rapids, MI to Everyone 07:58 PM Got to get some sleep for early morning EBRT. Have a Happy Thanksgiving all!
Julian Morales – Houston to Everyone 07:58 PM Happy Thanksgiving to ALL!
James Davidson (Houston) to Everyone 07:59 PM Happy Thanksgiving!
Robert G (Colorado) to Everyone 07:59 PM Happy Thanksgiving!
Bill H to Everyone 08:04 PM Happy Thanksgiving to all. GN
We LOVE our Art Friends here at AnCan! Not only do we create beautiful things together, but we take the time to come together as a community. All of our “students” are learning more and more each time, and we use those skills in other classes.
We also truly care about what matters to you. In fact, this art class project was requested by AnCan Art Friend Sharon, who wants to see the northern lights in person. Do you have any ideas for future classes? Just let us know!!
For this class, you’ll need
Paper
Your choice of medium – markers, pen, pencil, colored pencils, paint, watercolor pencils, anything that can mark.
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!)
During my visit down in the Melbourne, FL area in November I got to meet up with fellow AnCan Vet, Garry Tosca and his lovely partner, Trish, for lunch on the edge of the Indian River at the Old Fish House. Both of us are Vietnam Vets where my time was spent in Saigon at Tan Son Nhut Air Base in Computer Operations. 
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!
