Peter Kafka’s musing this week are born in Maui amd quicky emanate to encompass medical and natural challenges all the way to the mainland. (rd)
Sometimes I feel like I have my hand on a “Mouse” and I am continually zooming in and out, changing perspective on my own issues and those of much larger pictures. I could easily focus in on my own challenges and the fact that our local hospital appears to be in the midst of a second serious Covid-19 outbreak effecting some two dozen patients and an equal number of staff this time around. Normally I would not care too much, but since this is our only community hospital and I need to access it on a regular basis for my own treatment protocol it puts me in an awkward position.
But when I zoom out a bit, I can easily be more concerned about the city and count of Honolulu on Oahu where one of the most rapid and significant increases in Covid-19 infection rates in the US is occurring at present. But then I expand my vision a bit and cross the Pacific and note that the many residents of the Western states, and most particularly California are in the midst of a second serious thereat to life and livelihood, the extreme heat and wildfire season.
Normally I could say that these fires are too far away from me to matter. But a very good friend of mine who I met 4-years ago at UCSF while doing radiation for our respective prostate cancers, lives smack dab in the middle of what is now one of the largest fires in California history. When I spoke to, he and his wife earlier in the week they had reported that their house was standing at that time, but that the fire was igniting some other structures on their property. I don’t have an update, but when I search Google Maps, I can follow their road up the mountain and see that they are indeed surrounded by fire.
I zoom out a bit further and see that we are in the midst of hurricane season, that our country has yet to adequately manage this pandemic and we lead the world in terms of disease and deaths. Then further afield there are many parts of the world suffering from financial ruin and food shortages on top of everything. And then the ultimate click of the mouse greeted me this morning to warn of a 0.5 percent chance of our Earth being hit by an asteroid on the day before election day in November!
All this kind of helps me see that my little struggle with Prostate Cancer is not the center of the universe. I think it is helpful to zoom out to the bigger picture from time to time and keep perspective. One of the reasons I stay so engaged with our AnCan virtual online support meetings is to remember that others have significant issues and concerns that need attention and that I am big enough to step outside and beyond my little world and help another.
Editor’s Pick: Even amongst the best GU med oncs, some work with you and some do not. Hear how one makes it tough to access darolutamide (Nubeqa) while another does not.
Topic Discussed
Handling transition after intial treatment on RT + ADT; recurrence after RP 7 yrs ago; locating a PSMA scan; partial ADT holiday; using lighter exercise to fight fatigue; enzalutamide crippling – access darolutamide; staus of NHI PSMA trial; don’t fall for questionable trials; what next after PARP?; incontinence no more; SBRT salvage radiation; hernia experiences
Chat Log
Ron Bucher (to Everyone): 5:18 PM: I attended advanced groups before I became an advanced patient, and I’m glad I did.
Herbert Geller (to Everyone): 5:56 PM: https://www.uclahealth.org/urology/iuo/an-experimental-imaging-scan
Herbert Geller (to Everyone): 5:59 PM: Nat Rev Urol . 2016 Apr;13(4):226-35. doi: 10.1038/nrurol.2016.26. Epub 2016 Feb 23. Current use of PSMA-PET in prostate cancer management Tobias Maurer 1, Matthias Eiber 2, Markus Schwaiger 2, Jürgen E Gschwend 1 Affiliations expand PMID: 26902337 DOI: 10.1038/nrurol.2016.26
Len Sierra (to Everyone): 6:00 PM: PSMA as therapy: https://www.prostatecancer.news/
Jeremy (to Everyone): 6:16 PM: Master Ming Tong Gu https://www.youtube.com/watch?v=Oj0ewBvr6zM&list=PLnQPg9ef3v52NHuQ1WIO8yjN-2yqpqIcs&index=13&t=4s
Len Sierra (to Everyone): 6:18 PM: You have to go to: smile.amazon.com
Russell Smith (to Everyone): 6:24 PM: Just signed up on Smile.amazon.com
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.
Editor’s Choice: So much tonight inc 30 gents!!! My choice – maybe the new Dx G4+5 with a suspicious image on L5; or, ECE with just 5mm of G3+4??? (rd)
Topics discussed
New Dx G4+5 with a suspicious mass; MRI shows ECE with tiny amount of G3+4; treating oligoMX the Kwon way; incontinence – do your Kegels!!; Procrit may finally help low blood counts; do stains mask your PSA?; addressing hot flashes; continued success on abi; penile Mx still a puzzle
Chat Log
John Ivory (to Everyone): 3:24 PM: Jim, I found this 5 min. video by the head of the Prostate Cancer Research Inst. (PCRI) in thinking about surgery vs. radiation https://bit.ly/3fSQQ37
Carl Forman (Private): 3:26 PM: just to let Jim know about the patient guide from PCF.org
Jeremy (Organizers): 3:47 PM: Rick, just got back from my second opinion at UCI w Dr. Edward Uchio. They agree that the MRI report is not consistent with the biopsy findings. My UA showed I have a bladder infection. So I’m holding off on surgery and going to undergoe genomic testing and antoehr MRI. Thank god I found you guys.
Herbert Geller (to Everyone): 3:58 PM: There is no PSMA PET in Pitt. But there is an ongoing trial at CWRUhttps://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2018-00468&r=1
AnCan – Rick (to Everyone): 4:34 PM: https://www.urotoday.com/video-lectures/prostate-cancer-foundation-2019/video/1593-the-impact-of-vitamin-d-and-statins-on-prostate-cancer-outcomes-lorelei-mucci-and-elizabethplatz.html
One of our earliest, and certainly most enduring, non-prostate cancer moderators has been nationally recognized caregiver advocate, Renata Louwers. In barely 12 months, if that, Renata lost her first husband, Ahmad, to bladder cancer back in 2014. Since that time she has tirelessly campaigned to establish the Caregiver perspective on the medical radar; not to mention all the fundraising she has done for BCAN and bladder cancer …. G-d Bless Her!
This past week Health Union published the second part of an article Renata wrote for their Bladder Cancer Page – both parts are linked below. And no, they are not specifically about bladder cancer but more about her experience of being a peer moderator for a videochat virtual group that AnCan runs for Advanced Cancer Caregivers.
The easiest way to find more of Renata’s articles …. and there are so many excellent ones, especially for The Philadelphia Inquirer, is to google ‘Renata Louwers, medical journalist‘; do it and you’ll have no regrets!
AnCan’s heartbeat thrives on helping peers; it races when our Volunteers, our lifeblood, find satisfaction in the work they perform for us at AnCan. We love our volunteers; we especially love you, Renata xox
To receive reminders for our Advanced Cancer Caregivers Group, or any others that are all free & drop-in, click here.