Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Sept 7, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Sept 7, 2020

 

Editor’s Pick:  Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!

Topics Discussed

Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?

Chat Log

Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control

Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.

Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?

Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.

Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.

Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT

Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern

Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?

Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend

John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that

AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/

Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?

Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?

Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.

Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?

Joe Boardman comes to terms with life

Joe Boardman comes to terms with life

If you have attended our Advanced Prostate Cancer Group, or our Speaking Freely Group or even our U60 Advanced PCa group, you may have been fortunate enough to hear Joe Boardman particpate from his erie in Colorado.

Joe is another remarkable athlete, like Kenny Capps who we justed blooged about. He has climbed many of the highest peaks with his wife, Karen and son, Eli …. we blogged about him a while back and you can read that here https://ancan.org/yet-another-amazing-athletic-achievements-with-zero-testosterone/

Now the University of Coloradoa has made this short film about The Boardmans on their family ranch in Wyoming ….. it’s a tear jerker!

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – June 1, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – June 1, 2020

Editor’s Pick: PRINT trial examines small cell/NE morphing … not to mention EXERCISE beats fatigue! (rd)

Topics Discussed

DeNovo Metastatic man enters trial for HPN424; yet more monotherapy bicalutamide – after 17 yrs of no treatment!; FMI finds ROS1 – what next; introducing palliative care; bone cancer pain or arthritis; PRINT trial looks to thwart PCa cells morphing to small cell/NE; clinical trials still shut down nationally; to radiate or not with 5 lesions?; Procrit?; another denovo Mx man asks should he do chemo?; EXERCISE WORKS to relieve fatigue from salvage RT!!!; remedies for hot sweats.

Chat Log

Jake (to Everyone): 5:19 PM: HPN424

Jake (to Everyone): 5:20 PM: https://www.biospace.com/article/releases/harpoon-therapeutics-announces-preliminary-safety-and-pharmacology-data-from-its-hpn424-phase-1-trial-in-prostate-cancer/

Rich Jackson (to Organizer(s) Only): 6:22 PM: About rhPSMA rhPSMA-7.3 (18F) consists of a radiohybrid Prostate-Specific Membrane Antigen (PSMA)-targeted receptor ligand which attaches to and is internalized by prostate cancer cells, and is labeled with the 18F radioisotope for PET imaging. Single intravenous administration of rhPSMA-7.3 (18F) for PET Scan

Dennis Correia (to Everyone): 6:32 PM: nct#02903160 (PRINT Trial)

Larry Fish (to Everyone): 7:05 PM: MMR mismatch repair deficiency

AnCan – Rick (to Everyone): 7:15 PM: https://www.urotoday.com/video-lectures/mcrpc-treatment/video/mediaitem/843-embedded-media2017-10-09-16-50-00.html?utm_source=newsletter_4869&utm_medium=email&utm_campaign=navigating-the-course-of-treatment-new-findings-meet-old-habits-findings-from-latitude

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – June 1, 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 – June 1, 2020

High Risk/Recurrent/Advanced Prostate Cancer Virtual Group recording – 03/16/20

PLEASE NOTE – for reasons best known to GtM, we only have audio this week. Nor does there appear to have been any use of the Chat Window.

Editor’s Pick: LHRH drugs and mental anguish – a topic near and dear to my heart. I consider myself fortunate to have known ‘The Black Dog’, as Churchill called depression, before I went on Lupron. That was a blessing for me in that it was much esier for me to handle and absorb. My heart goes out to men who suffer depression &/or anxiety with no prior experience. (rd)

Topics Discussed:

condolences to Jim Ward; who’s at risk from COVID-19?; low PSA, soft -tissue PCa endures for 20 years; multiple treatments at one hospital visit; LHRH drugs cause anxiety and depression; medical marijuana; radiating the prostate in advanced disease; with recurrence, at what PSA level should you scan?; frequency and type of scans to monitor advanced disease

Brief ASCO Survey on Exercise and Diet for all Living with Any Cancer

Brief ASCO Survey on Exercise and Diet for all Living with Any Cancer

I am copying a post recently received from New PCI publcizing a short ASCO survey on how you embrace exercise and diet. As many know, AnCan strongly endorses exercise as part of any cancer management program; and sensible diet may also be significant and rarely hurts. I have taken the survey and encourage anyone previously diagnosed with any type of cancer to do so. (rd)

The American Society of Clinical Oncology (ASCO) has put together a brief research survey to learn more about patients’ experiences with cancer care. Specifically, ASCO is interested in patient’s perspectives on how things like diet, exercise, and weight management are incorporated into cancer care.

The survey should take most people no more than 10 minutes maximum to complete. All questions are optional, and ASCO has stated clearly that no personally identifiable information will be collected.

If you are an individual with a personal history of prostate cancer (or cancer of any other type), please click here to take this patient survey. Thanks for your help to ASCO in seeking to improve cancer care.

If you know others who are > 18 years of age and who have been diagnosed with any form of cancer, ASCO would also appreciate it if you passed information about this survey on to those people too. ASCO is seeking the widest possible range of responses to this survey from the cancer patient community.