AnCan has partnered with the Male Breast Cancer Coalition for a couple of years or more now. We hold a successful monthly group and are expanding. For us at AnCan, we view male breast cancer as a rare disease. While its research may not be as underfunded as other rare conditions, there are only arond 3,000 men diagnosed in the US annually. Our virtual groups alow them to get together.
First we are adding a US-based discussion group – the current group is largely used for presentations. Called MBCC – Open Mic, it will launch on July 22 and allow men living with breast cancer to get together to chat about their condition.
And AnCan along with MBCC, DeMontfort University and Walk the Walk ( a large UK BCa charity) will launch a UK/EU/Africa video chat virtual support group in October. Its lead moderator is Doug Harper, and you’ll find him singing with his band about self examination in the video above. If you want to see Doug performing the song live, click here.
(Editor’s Note: What a meeting ….. 26 particpants with SIX (6) new men; 2 under 60 ….. in particular, catch John G and Doug M.)
Topics Discussed
8 months of treatment and docs say no more can be done!!; de novo penile metastasis; recurrent PCa in younger man; disease returns after 10 years!; de novo Mx Dx for scientist at NIH; HT side effects; atonic (non-contracting) bladder; intimacy references; weekly docetaxel regime; metformin recall
Chat Log
Len (to Everyone): 5:10 PM: www.ancan.org
Peter Kafka (to Organizer(s) Only): 5:22 PM: Micro Satelite Instability
Len (to Everyone): 5:29 PM: Genitourinary Oncologist
Peter Kafka (to Organizer(s) Only): 5:33 PM: Sir – Spheres for Liver Cancer mets
joed2: 5:34 PM: Microspheres for liver lesions
Jake Hannam (to Everyone): 5:38 PM: rd@ancan.org
Ancan – Rick (to Everyone): 6:12 PM: clinicaltrials.gov
Russ Smith (to Everyone): 6:34 PM: Under-60 Advanced Prostate Cancer July 9 @ 7:00 pm – 8:30 pm EDT |Recurring Event (See all) GoTo Meeting – Barniskis Room Back in mid-2012, the US Preventative Services Task Force first made the following recommendation with an associated D Grade: The U.S. Preventive Services Task Force (USPSTF) recommends against prostate-specific antigen (PSA)–based screening for prostate cancer. At the time, prostate cancer advocates objected strongly, warning it would result in many more men diagnosed de novo metastatic, and ultimately more disease specific deaths. Sadly, we have seen this manifested, especially with respect to younger men. AnCan clearly sees the trend along with a lack of support…
Ken Anderson (to Everyone): 6:36 PM: good post Russ….
John I (to Everyone): 6:47 PM: walter stadler is at U of Chicago–I saw russell szmulewitz at U of C & loved him bue insurancacemade me stop John I (to Everyone): 6:49 PM: alicia morgans https://www.nm.org/doctors/1417011529/alicia-k-morgans-md-mph
Russ Smith (to Everyone): 6:49 PM: Joe, email me at *******. I am from Chicago and on ADT, Lupron and Casodex, I use Trimix.
John I (to Everyone): 6:52 PM: Alicia Morgans’ telephone 312.695.0990 John I (to Everyone): 7:05 PM: Thanks MUCH for your hospitality everyone
Ken Anderson (to Everyone): 7:06 PM: thanks for stopping by……
Just a little over a year ago, our beloved gene expert and Board Member, Professor Bill Burhans, delivered a webinar we called Cancer Genetics 101. While Professor Bill is sadly no longer with us, two other good AnCan friends, Dr. Eli Van Allen and Dr. Corrie Painter Ph.D delivered their equally good take on the same content late last month sponsored by Cancer Research Institute, the historical research home of immunotherapy.
I have to admit, many of the questions were way more sophisticated than we produced. And in their inimitable fashions, both Eli and Corrie dumbed down teh answers to make them very intelligible for the many – but not all – lay particpants.
This webinar is definitley worth bookmarking for future reference.
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
Editor’s Pick: Long discussion on the impact of sugar, glucose and cancer
Topics Discussed
Sugar, glucose, insulin and PCa; what next after 2nd line anti-androgens fail?; is there a right # of chemo cycles?; taxane based chemo; diabetics and hormone therapy; Gleason 8 with ultra-low PSA; darolutamide; spot radiation; what’s an ‘oncologist’?; should have had a V-8???; IGRT; Truliicity; moving on from your urologist; blood transfusions; more on selecting the next treatment
AnCan is a huge proponent of inclkuding palliative care in your treatment plan and medical team!!
Palliative care is NOT about hospice or end-of-life ….. that is just a sub-set of palliative medicine. At AnCan we prefer to call it Symptom Management, the lingo used by UCSF. That is no coincidence as AnCan has an excellent longstanding relationship with the UCSF service. Dr. B.J. Miller is on our Advisory Board, and Dr.Mike Rabow, the Director of Symptom Management Service at UCSF, is a friend of the family too.
Last Friday, Dr. Rabow gave an excellent webinar on CureTalks titled Redefining Palliative Care – you can listen here. For those living with advanced cancer, auditing this webinar is a MUST in our view!
More good news to offset the difficulties of advanced cancer treatment!
If you have been paying attention, you will have noted that ADT (androgen deprivation therapy) drugs may protect against COVID19. A certain male protein, TMPRSS2, acts as a door handle for the virus to enter the lungs. ADT drugs suppress TMPRSS, and the LHRH antagonist, degarelix (Firmagon) has been shown to be very effective in controlling the virus in an Italian trial and is now being tested here in the US through the VA System; Prostate Cancer Foundation has sponsored both trials. Here are a couple of links to enlighten you:
Now the BBC is reporting this morning that dexamethasone may be a “lifesaving” COVID19 drug. Dexamethasone is a steroid, frequently used around the time of infusion for intravenous infused chemotherapy. In the UK RECOVERY Trial it has been shown to perform as a very effective agent to control the immune system, hence the aggression of the COVID19 virus. AND its inexpensive and readily available!
So if you are anything like our intrepid AnCan Board Chair, Peter Kafka, and currently on ADT and chemo, you may be very well protected against COVID19.
New G4+4 Dx with very low PSA; Tx after Lu177 PSMA fails; immunotherapy with no positive markers vs Jevtana; perineal pain; successful RT to prostate for Mx man; remarkable continued success from abi; interpreting inconsistent scan report; recurrent PCa plateaus w/o treatment; continued success from PARP-I
Chat Log
Jake Hannam (to Everyone): 5:21 PM: Jonathan Epstein 410-955-5043
Len (to Everyone): 6:00 PM: Talabostat is an experimental drug that initiates an inflammatory response in the tumor microenvironment, converting cold tumors to hot tumors and thereby making them better targets for checkpoint inhibitors, like pembro or nivolumab. The open-label Phase 2 basket trial is NCT04171219
scott (to Everyone): 6:01 PM: I have to go. I have an online class tonight. Best to everyone. See you next meeting.
Larry Fish (to Everyone): 6:35 PM: there are a number of variations on the ‘perianal abscess leading to lumps and related painful cysts and common and unusual perianal conditions….you can just Google any of the related terms and get to the articles and links that I ran into in my intermittant condition and still looking for a definitive answer or treatment that relolves it permanently. So I use a ring pillow for my chair and it comes and goes.
I was recently honored to collaborate with WEGO Health for a presentation on how to conduct virtual meetings and support groups. Watch the recording above …. And we also distributed a Moderator Cheat Sheet for Virtual Meetings that you can download.
Please reach out to me at rd@ancan.org or 415 505 0924 if you have questions.
