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.
Editor’s Pick: We visit with the radiation bump twice this week …. and hear about treatment success!
Topics Discussed
Drug costs; renal lesions; beware the radation bump!; anemia & edema from chemo; 3 yrs of HT alone brings success; Cipro warnings; PARP-I’s and PCa; PSMA scan availability; hot flash remedies; PSA rises post brachy+IMRT+HT
Chat Log
scott (to Everyone): 5:14 PM: does anyone read notes in chat window?
Len (to Everyone): 5:16 PM: Yes, most of us do, Scott.
Carl Forman (to Everyone): 5:23 PM: Oct 15 – Dec 7 is Medicare open enrollment period, where you can change your drug plan for 2021. Go to Medicare.gov to do your research for the right plan.
Len (to Everyone): 5:24 PM: From Dr. Russell Szmulewitz, (U Chicago) director of the clinical trial showing equivalent effectiveness of Zytiga with food at ¼ the dose with a low fat meal. “Abiraterone, approved in 2011 for the treatment of metastatic prostate cancer, has a “food effect” that is greater than any other marketed drug. The amount of abiraterone that gets absorbed and enters the blood stream can be multiplied four or five times if the drug is swallowed with a low-fat meal (7 percent fat, about 300 calories). That can increase to 10 times with a high-fat meal (57 percent fat, 825 calories).”
Herbert Geller (to Everyone): 5:25 PM: Low-Dose Abiraterone in Metastatic Prostate Cancer: Is It Practice Changing? Facts and Facets. Patel A, Tannock IF, Srivastava P, Biswas B, Gupta VG, Batra A, Bhethanabhotla S, Pramanik R, Mahindru S, Tilak T, Das CK, Mehta P. JCO Glob Oncol. 2020 Mar;6:382-386. doi: 10.1200/JGO.19.00341. PMID: 32125899 Free PMC article.
Len (to Everyone): 5:32 PM: Dear Len Sierra, It is our pleasure to inform you that you have been approved for 2020 participation in the Prostate Cancer Copay Assistance Program. This allows you to receive assistance through 12/31/2020. If you have any questions regarding this notification, please contact a Patient Advocate at (855) 318-3298 Monday through Friday, from 9 a.m. – 6 p.m. ET
scott (to Everyone): 5:50 PM: gotta go to meet the teacher night….best to everyone
Russ Smith (to Everyone): 5:58 PM: Good night all, I have a test to complete.
Peter Kafka (to Everyone): 6:18 PM: It is the psa doubling time that is the trouble indicator Anything under 3-months is the Warning Sign. Even at low numbers
Peter Kafka (to Everyone): 6:22 PM: I was low at those low #’s and the PSMA scan showed me where the action was.
Len (to Everyone): 6:31 PM: Contact: Yolanda McKinney, R.N.(240) 760-6095 ymckinney@mail.nih.gov 10 Center Drive Bldg10/B3B81 Bethesda, MD 20892
Editor’s Pick: Weekly chemo bookends our session this week; it’s an unusal alternative that may help some tolerate chemo better.
Topics Discussed
Weekly chemo regime; muscular side effects from ADT; moles & skin tags from ADT; bone strengtheners for osteoporosis/osteopenia with ADT; PSA; radiating the primary/gland; constipation; arificial sphincter; swallowing abi horse pills; more on weekly chemo; viewing a FMI report.
Chat Log
Carl Forman (to Everyone): 3:53 PM: Xgeva has an informative website at xgeva.com
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?
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.
