Trevor Maxwell is a remarkable man. A young colorectal cancer survivor, he and Joe Bullock, another colorectal cancer survior, have formed Man Up To Cancer. This is a safe and suportive space for male surviors to speak about their condition.
Trevor comes to AnCan via our good friend at Inspire, John Novack, and also through our prostate cancer participant, Russ Smith who is active in Man Up To Cancer. Trevor’s recent video essay on situation is touching and piercing at the same time. Here is what he writes:
6.24.20
“When the storm of cancer hits, you need protection. Something to shield and strengthen you. My shield is an oak tree.”
This short film on YouTube (4 min) was produced and edited by my talented friend, Roger McCord. With stunning footage taken from ground level and from high above the coastline, the film captures the heartache and hope of my cancer journey.
The TALK is a series of webinars addessing how parents and kids of every age speak to each other about their health conditions. If you haven’t noticed, this is a topic that rarely get aired in public – AnCan hopes to address that over the next several months.
We started last Tuesday, June 30 with a discussion around prostate cancer, moderated by genitourinary medical oncologist extraordinaire, Dr. Alicia Morgans speaking with panel members that included pairs of father and child from ages 17 to 43. We also welcomed Dr. Ryan Berglund, a urologist at Clevaland Clinic and spokesperson for MENtion It, a men’s health awareness campaign sponsored by his institution. Dr. Berglund had excellent slides and a 2 minute video that we were unable to view due to a SNAFU by our co-presenters, UsTOO. But the magic of modern technology allows us to provide them to you here …. click here – the video is embedded in the 5th of 6 slides. And to watch the whole, outstanding presentation, click on the video above
The ‘superstar’ lead moderator for our Sarcoidosis Virtual Support Group, Frank Rivera, contracted Covid19 and came close to death. Wth his lungs already significantly compromised by sarcoidosis, Frank made the strategic decsion to stay at home in Huntington, Long Island rather than enter a New York area hospital.
It paid off … read his blog post that appeared on Arianna Huffington’s Thrive Global blog today! Frank is back to running our 3 monthly virtual groups! And it appears AnCan is keeping him sane – as he says:
One thing that has helped me is having our Sarcoidosis (Virtual) Online Support Group Meeting. That has been a Godsend to me. It has helped not just everyone else,but me very much so.
What a partnership! Read Frank’s blog post and background here.
Pick of the Week …. long term monotherapy bicalutamide (Casodex)
Topic discussed
Mayo Clinic & Medicare reimbursement; PSMA scans vs starting ADT and salvage radiation on recurrence; USPSTF PSA recommndations result in advanced Dx and death; long-term monotherapy bicalutamide (Casodex); olaparib & CDK12; diet during salvage RT; novel abiraterone protocol; intervention after surgery; compassionate vs off label use; drug pricing after FDA approval; Richard Foody RIP
Chat Log
Peter Kafka : 3:41 PM: DR. Felix Feng at UCSF rad onc is amonst the best in the nation. Hard to get to him. He came from Michigan and is well known for his research in prostate cancer.
AnCan – Rick (to Peter Kafka): 3:55 PM: You are right – forgot about Felix. Best to let Borno direct him ….
Richard Stanton (to Everyone): 4:02 PM: Anyone who wants to chat offline please contact me. Thanks. (Ed. If you wish to discuss bicalutamide monotherapy, please contact info@ancan.org for Richard Stanton’s email address)
Editor’s Pick – Low PSA with high volume metastasis (rd) + successful treatment for ‘young’ man with de novo metastatic disease
Topics Discussed
de novo Mx with low PSA; clinical trial conflicts; biopsy sample from primary vs. Mx tumor; relevance of bone density tests; young de novo Mx man finds successful treatment; debulking the primary; when the end may not be the end!; bone biopsies; testing for PSMA avidity; PSMA scan availability in Covid times; testosterone swings; shipping delays for abiraterone; specialty pharmacies; what is the ‘doughnut’ hole?; abscopal/immuno effect from RT
Chat Log
scott (to Everyone): 5:05 PM: is this link the same link for all meetings?
Ken Anderson (to Everyone): 5:06 PM: scott yes this is the same meeting room
scott (to Everyone): 5:07 PM: 100 degrees isn’t fun…
Dell Jensen (to Everyone): 5:38 PM: Both Lupron and Docataxel
Dell Jensen (to Everyone): 5:43 PM: Rick is correct, treating the primary is critical
scott (to Everyone): 5:48 PM: is docetaxyl an infusion or a pill?
Dell Jensen (to Everyone): 5:48 PM: infusion
Ken Anderson (to Everyone): 5:49 PM: infusion once every three weeks
scott (to Everyone): 5:49 PM: do you do docetaxyl if the Zytiga I am on isn’t working?”
Ken Anderson (to Everyone): 5:49 PM: you can for sure do both at the same time…
scott (to Everyone): 5:51 PM: does the docetaxil have hard side effects?
Dell Jensen (to Everyone): 5:51 PM: osteoporosis is a result of ADT treatment
Dell Jensen (to Everyone): 5:51 PM: I definitely concur
Dell Jensen (to Everyone): 5:52 PM: my side effects were minimal, infections were my problems.
Ken Anderson (to Everyone): 5:52 PM: all chemo has side effects.. doce has some for sure and all are post on the web.
scott (to Everyone): 5:53 PM: thanks ken
Peter Kafka (to Everyone): 5:54 PM: I had a specialized genetic test from MIRA labs that gave me a risk assessment for developing a grade 2 or greater adverse reaction to PD1/PDL1 agent therapy.
Russ Smith (to Everyone): 6:28 PM: Good night all. It’s been a long day.
scott (to Everyone): 6:31 PM: is david muslin head of answer cancer foundation?
Len (to Everyone): 6:35 PM: No, Rick is head of AnCan
scott (to Everyone): 6:36 PM: I sent a donation to ancan fdn in honor of rick and have heard nothing
Len (to Everyone): 6:36 PM: It will be acknowledged soon, if in fact they received it properly.
scott (to Everyone): 6:37 PM: thanks…just want to make sure rick is honored by donation
scott (to Everyone): 6:39 PM: is speaking freely 8 pm az time?
Rich Jackson (to Everyone): 6:43 PM: Speaking Freely starts at 8pm EST.
scott (to Everyone): 6:43 PM: thanks
Rich Jackson (to Everyone): 6:43 PM: Same connection as this call.
scott (to Everyone): 6:53 PM: who is the gentleman now speaking?
Dell Jensen (to Everyone): 6:53 PM: Correia
Dell Jensen (to Everyone): 6:55 PM: Are there other compounding pharmacy?
Dell Jensen (to Everyone): 6:57 PM: I have local one that is in Rock Island, IL
