Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – May 12, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – May 12, 2020

 

Pick of the Week: Do academic GU med oncs have a clinical trial conflict of interest?

Topics Discussed

Finding a quarterback GU med onc in Pennsylvania; do academic GU med oncs have a trial conflict of interest?; no prednisone with chemo; what mutation drives your PCa; gynecomastia remedies; is too much succes from a 2nd line HT a bad thing?; Dr. Daniel Petrylak @ Yale; how do you follow up your RT/SBRT?; painful Lupron shots; generic abiraterone co-pay assistance

Chat Log  

scott (to Everyone): 3:31 PM: could you spell that again…the gumedical oncologist?

Len (to Everyone): 3:31 PM: genitourinary

Len (to Everyone): 3:31 PM: genito-urinary medical oncologist

Peter K : 3:38 PM: Allentown to MSK in Bedminster, NJ is only 1 hour drive.  Same distance and time to Philly.

Peter K : 3:52 PM: Roswell Park is not far from Rochester

scott (to Everyone): 3:54 PM: how do you spell and what is something lilke “sabozitaxil” she is referring to?  anyone?

Len (to Everyone): 3:55 PM: cabazitaxel

Len (to Everyone): 3:55 PM: It’s a form of chemotherapy very similar to docetaxel

scott (to Everyone): 3:55 PM: how do you spell it? thanks

Len (to Everyone): 3:59 PM: cabazitaxel

Len (to Everyone): 4:00 PM: trade name is Jevtana

scott (to Everyone): 4:03 PM: my big question tonight, if I get to ask, is what is best foundation or group for financial assistance with Zytiga copays?

Len (to Everyone): 4:10 PM: Scott, go here: https://www.janssencarepath.com/patient/zytiga/cost-support

scott (to Everyone): 4:15 PM: Janssen won’t help if you have Medicare

Jake (to Everyone): 4:16 PM: https://www.youtube.com/channel/UCOX221U27DhVDCe3Ozz2rDg

Len (to Everyone): 4:18 PM: Jake, can you help Scott with Zytiga co-pay assistance?

ASKING FOR HELP …… & that includes the male gender!!

ASKING FOR HELP …… & that includes the male gender!!

Peter Kafka, our Board Chair, is currently in the midst of chemo. He relates first hand why men must to get off their high horse and ask for help – it can solve many medical problems simply!  (rd)
ASKING FOR HELP

Why is it so difficult for men to ask for help?  Perhaps many men view it as a sign of weakness if we can’t handle a challenge on our own.  I have had plenty of occasions to ask myself this question over the past number of years.  In terms of changes in my body and internal mechanisms I have noticed that I can “put up” with many things for long periods of time under the belief that whatever it is that is going on will go away or I will adapt to the changes.  When I think about it now, I realize that this is a pretty stupid approach.  An independent nature can get one in big and unnecessary trouble.

For many months before I was diagnosed with Prostate Cancer, I was symptomatic with urinary retention.  In simple terms, I could not piss.  This is not a normal condition which I knew, but somehow, I talked myself into believing that it was a sign of aging and probably nothing more than an enlarged prostate.  It did not help that my urologist was not very attentive and did not give much more than a passing thought and a prescription for Flowmax for my condition.

After months of pushing on my gut in order to force out small amounts of urine to take the pressure off my bladder, it was a close friend who pushed me to seek medical help.  I did, and as they say; “The rest is history”.  But I went through many months of needless discomfort and agony before I humbled myself enough to seek help.  Was it embarrassment? Arrogance? Independence? Perhaps a bit of all of these that kept me from asking for help.

I mention this because I am still learning thIS great lesson.  In my current regimen of chemotherapy, I have noticed marked changes to my vision.  My first thought (self-diagnosis again) was that it must be cataracts.  Perhaps the chemo was accelerating this “natural” phenomenon that comes with aging for many of us in our 70’s.   But the changes in my vision were substantial and rapid enough that I thought it would be worth mentioning to my medical oncologist during a recent telephone consult.  I included this item in my list of “talking points” which I put together for each and every one of my medical appointments.  It is too easy to forget stuff.  I have learned this the hard way.

The answer came quick.  It was not the chemo; it was the Prednisone.  Sure enough, when I searched out the side effects of Prednisone, the blurry and cloudy vision I experienced was one of them and even at the low dose I was taking.  I inquired about why I needed this steroid, I was told that for some it helped stimulate appetite and energy levels.  With my doctor’s approval I weaned myself off the prednisone and decided that I would try and continue my chemo regimen with out it. 

So, I guess I am still learning the great lesson:  Be your own best advocate and ask for help!

Join SUPER HealtheVoices Live this Saturday, April 25 – all invited!!!

Some of you may already be aware of Janssen/J&J’s annual patient advocate conference, HealtheVoices, that is usually by invitation only based on a competitive application process. This year’s pandemic has sent the Conference virtual, and it is open to ALL! The conference covers the spectrum of conditions from mental to physical, and from cancer to rare diseases.
#HealtheVoicesLIVE 2020 is this Saturday, April 25 starting from 11 am – 8.30 pm Eastern. You can find the full agenda and link to join HERE. Feel free to pop in and out during the day and tune in to presentations and events of interest to each of you.There are presentations, interviews and even small group breakouts allowing you to interact with leading national advocates for differing conditions.
Please note the links to join change for the morning and afternoon sessions:

To join the broadcast between 11 a.m. and 3:30 p.m. ET, click this link.

To join the broadcast between 3:30 p.m. and 8:30 p.m. ET, click this link.

For the best experience, join the meeting via Google Chrome

I will be presenting in the 3rd Hour; the session starts at 1.30 pm Eastern and I am due up first as part of 4 flash sessions followed by a Q&A. I will be offering tips on virtual moderation – a skill many patient advocates have had to quickly familiarize themselves with in the past few weeks. But as you all know, we’ve been at this game for many years!!
Please join me and HeV, enjoy the conference, learn a little, and above all – stay safe, well and have fun!
Onward & upwards, rd
Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – May 12, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Apr 20, 2020

Editor’s Note: We mourn the loss of Dan Louie, who we have supported since 2014.

Pick of the Week: Is there an immunologic/abscopal systemic benefit from radiation therapy?

Topics Discussed

Recent RRP finds local metastasis – follow up?; deferring appointments during Covid19; monitoring testosterone levels on hormone therapy; completing SBRT to prostate and oligometastaic spots; exercise and treatment duting Covid19; abscopal/immuno systemic response from radiation therapy; Covid19 problems on Maui; Dan Louie

Chat Log   

Jake (to Organizer(s) Only): 5:31 PM: did he say he is metastatic?

AnCan – Rick (to Jake): 5:42 PM: yup – one lymph node; local Mx

AnCan – Rick (to Everyone): 5:45 PM: RADICAL trial shows adjuvant may be inferior to salvage https://www.ascopost.com/issues/october-25-2019/studies-suggest-early-salvage-radiotherapy-may-be-preferable-to-adjuvant-radiotherapy-after-prostatectomy/

AnCan – Rick (to Everyone): 5:48 PM: RADICALS-RT trial

AnCan – Rick (to Everyone): 6:19 PM: Peter – we care and love you xoxox

AnCan – Rick (to Len): 6:26 PM: Let’s make Carl a guinea pig for MyVictory

Len (Private): 6:27 PM: yes!

Jake (to Everyone): 6:39 PM: https://yourmission.org/

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – May 12, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Apr 14, 2020

Editor’s Pick: Low dose abiraterone with food succeeds with reduced side effect profile for this participant!

Topics Discussed

Covid19 and Cancer Testing; Low dose Zytiga with food succeeds; tribute to Jim St.James; Covid19 and Cancer Treatment/chemo; SBRT to oligometastatic bone lesions & prostate gland; bisphosphonate side effects; sucessful RP treatment