Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 21, 2022

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 21, 2022

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!

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 https://www.gotomeet.me/AnswerCancer     Veterans Healthcare … 4th Thursday @ 8.00 pm Eastern https://www.gotomeet.me/AnswerCancer   No meeting on Thanksgiving!

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

AnCan Advisory Board Member Honored Nationally

AnCan Advisory Board Member Honored Nationally

AnCan Advisory Board Member Honored Nationally

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

Hi-Risk/Recurrent/Advanced PCa Video Chat, Nov 15, 2022

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/

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:

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.