Editors Pick: Men on long term ADT require bone density tests
Topics Discussed
GU Med Onc recommendation for Dana Farber; Firmagon shots and speed of take-up; sequencing abiraterone acetate; bone density testing; neuropathy; taking a break between treatments; new participant out of options carries BRCA2; PSA jumping around in stray intermediate risk man; penile mets patient moves to cabazitaxel; RP follow up with ADT and abiraterone; PSA, cycling and tests; addresing prostate treatment in denovo Mx men
Chat Log
Len (to Everyone): 5:44 PM: www.sciatica.org
Len (to Everyone): 5:52 PM: genitourinary medical oncologist
Editor’s Pick: Very rare penile metatstasis …. not to mention two younger men diagnosed, one denovo metastatic!
Happy Bastille Day ……. Topics Discussed
younger G9 man experiences recurrence; older man experiences recurrence; another younger denovo Mx man needs GU med onc on team; stock medicine cabinet before starting chemo; Neulasta patch falls off!; enzalutamide …. & bad dreams; let’s compare C11 with an Axumin scan; prepping for surgery and how to follow up; feeling mets grow in your penis!
Chat Window
BARBARA DYSKANT (to Everyone): 3:09 PM: I will need to leave soon because Barry isn’t feeling well tonight. He will get another transfusion tomorrow (2 units this time) — help is on the way. I will stay in touch, of course. Have a great night.
AnCan – rick (to BARBARA DYSKANT): 3:13 PM: Got it B – feel free to come in and out!
BARBARA DYSKANT (Private): 3:13 PM: THanks Rick!!!! Have a great night.
Len (to Everyone): 3:15 PM: ancan.org
Len (to Everyone): 3:45 PM: From the TOPARP clinical trial: “Of these 16 patients, 14 (88%) had a response to olaparib, including all 7 patients with BRCA2 loss”
Madhav Mohan (to Everyone): 3:47 PM: Thanks Carl. can you repeat the name of the new drug you got on?
Madhav Mohan (to Everyone): 3:50 PM: my pre-surgery gleason was a 4/5.
Madhav Mohan (to Everyone): 3:51 PM: this was confirmed on the post surgery pathology – Primary was 4 and Secondary was 5
Madhav Mohan (to Everyone): 4:14 PM: Thanks Peter, Carl, Len, Rick. Real useful information. I checked my Genomic Assay – the mutations were in BRCA1, CDK12 which they called out and also mentioned NF1 and TERT
Len (to Everyone): 4:16 PM: The BRCA and CDK12 mutations are “actionable.” Not the others.
Madhav Mohan (to Everyone): 4:16 PM: Thats what they said, Len.
Madhav Mohan (to Everyone): 4:17 PM: :))
Carl Forman (Private): 4:29 PM: Curious about the new guy from last week who was told he has weeks to live, and was hopefully going to see Paul Corn. Have you heard from him since?
AnCan – rick (to Carl Forman): 4:32 PM: we set him up with Corn – this week I think
Gene Spesard (to Organizer(s) Only): 4:37 PM: Got to leave. Dog demands food.
AnCan – rick (to Everyone): 4:50 PM: PCa pamphlet http://urology.ucsf.edu/sites/urology.ucsf.edu/files/uploaded-files/attachments/localized_prostate_cancer_and_its_treatment_1.pdf
Nick (to Everyone): 4:59 PM: Thank you for all the valuable info and well wishes.
John A (to Everyone): 5:17 PM: “Prostate cancer with penile metastasis: a case report.” Hinyokika Kiyo 2005: 519(1);771-3. Sawada A, et al. Patient improved on Estramustine, Paclitaxel and Carboplatin.
Len (to Everyone): 5:19 PM: https://mpcproject.org/home
Peter Kafka, AnCan’s Board Chair, Lead Moderator for the Low/Intermediate Risk Prostate Cancer VIrtual Group, and general renaissance man reflects on how readily accessible medical care is to many. Since Peter is just finishing his 6th and final cycle of chemotherapy for his own condition, he is well qualified to muse! (rd)
One aspect of the Covid-19 pandemic that stands out to me is the tension amongst the nationalistic models of healthcare and preventative medicine that exist in the world. It seems to me that this current experience is exposing the need to push the door open to a more cooperative and universal model of access to healthcare. Once a vaccine is developed it will have to be available across the board to everyone otherwise national borders will forever be closed.
Those of us who have been dealing with various aspects of the prostate cancer spectrum for any time have no doubt noticed the disparities in the world regarding diagnosis and treatment. Yet the disease, like Covid-19 is universal the world over. Even within the United States, the options that are available to men who face prostate cancer are not even all over. In my own experience I have had to travel many miles to seek diagnostic and treatment options for my disease that were not available at home. And I know that many men who face a similar predicament do not have this option.
The term “Standard of Care” seems to relate more to the legal protection of the medical field rather than a measure of the best options that a patient might have. It is not a good yardstick, and lags way behind the rapidly advancing medical advances in the world of prostate cancer. Standard of care is often the medical minimum and I feel that all of us men, the world over deserves more than that. I know that I would not be alive today, six years on from diagnosis if I had settled for the standard of care treatment for my disease.
In the current situation with travel restrictions and closed borders some diagnostic and treatment options are no longer universally available, even to those who might be in financial position to afford them. Up until recently it seemed that money was the key that opened the door to the best healthcare. So, in my mind, during this unprecedented time of worldwide crisis it should give us pause to ponder if there perhaps a way forward to raise the bar and make the best healthcare more universally available to all. Can we imagine such a possibility?
(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.
