Editor’s Pick ….. From Down Under, we hear from a Gent diagnosed metastatic at aged 50 who has managed his disease successfully since 2012! AnCan LOVES these anecdotal stories that offer hope (rd)
Topics Discussed
Cancer returns, but is it prostate cancer or lymphoma?; ‘young man’s’ successful treatment of metastatic cancer over 8 years; TMJ and bone support medicines; another man finds he’s BRCA+ & anemic; East Coast PSMA scans; chemo leads to foot & hand rash – or maybe allergy at the infusion site; enz, abi or chemo – which first?; acupuncture solves neuropathy; NIH still shut down for PSMA scans; seeking empirical validation for treating the primary tumor; needle biopsy of inguinal lymph node
Chat Log
AnCan Barniskis Room (to Len Sierra): 5:10 PM: is Jim still on HT??
AnCan Barniskis Room (to Len Sierra): 5:14 PM: They dont need tissue – liquid Bx
Peter Kafka (to Everyone): 5:15 PM: Who is treating Jim
David Muslin (to Everyone): 5:18 PM: Dr. Marc J Chernoff, DO is a doctor primarily located in Meadowbrook, PA, with other offices in Meadowbrook, PA and Willow Grove, PA( and 4 other locations). He has 29 years of experience. His specialties include Internal Medicine, Hematology/Oncology, Medical Oncology.
AnCan Barniskis Room (to Len Sierra): 5:21 PM: Geynisman @ Fox Chase
John I. (to Everyone): 5:22 PM: https://www.foxchase.org/daniel-geynisman
Len Sierra (Private): 5:41 PM: For lymphoma?
Len Sierra (Private): 5:46 PM: that was in response to your suggestion that he should have a liquid biopsy.
Len Sierra (to Everyone): 5:52 PM: Jim Jeffries, Read Mark Scholz book on prostate cancer: “The Key to Prostate Cancer.” Maybe others can suggest other recent good books.
Peter Kafka (to Everyone): 5:54 PM: Jim: Book available on Amazon
AnCan Barniskis Room (to Len Sierra): 5:57 PM: completely missed the whole lymphoma side initially ,,,,,
Rusty (to Everyone): 6:00 PM: Gotta run guys! Have a great night.
Carl Forman (to Everyone): 6:03 PM: Interesting that PSMA scans have been readily available in Australia, but not yet in the US.
AnCan Barniskis Room (to Everyone): 6:04 PM: PSMA on trial in Oz
Jake Hannam (to Organizer(s) Only): 6:29 PM: I do have a question if there is time.
AnCan Barniskis Room (to Everyone): 6:39 PM: University of Indiana PSMA
Mark Perloe (to Everyone): 6:40 PM: Emory and Columbia University have trials now.
CancerCare welcomes you to participate in our upcoming CancerCare Connect® Education Workshops. These one-hour telephone and webcast workshops are a cost-free way to learn about cancer-related issues from the convenience of your home or office. Leading experts in oncology provide the most up-to-date information via phone and online.
Please feel free to forward to friends, family, partners, caregivers, colleagues, health care professionals and anyone affected by cancer.
For more information and to register, please visit www.cancercare.org/connect or email connect@cancercare.org. Health care professionals: please contact us with your name, address, and license type for additional information regarding continuing education credits. Requests must be received within two weeks of the live program.
One of the video chat, virtual groups our factotum Board Chair, Peter Kafka, moderates, is a men-only, pan-cancer meeting on the island of Maui (& Malakai), where he lives fulltime. His recent reminder for tonight’s meeting makes worrisome reading and includes helpful advice ……
Aloha! ……. once again our local hospital is in the news due to very recent incidents of Covid-19 infections among some patients and staff. I don’t mention this to cause alarm, but rather to caution those of us who must out of necessity use the facilities of the hospital for treatment. I found myself at the hospital for the administration of an injection on the very morning when this “outbreak” was first reported last week. Of course it made me a little uncomfortable, but what to do? Those of us with cancer, and particularly those of us undergoing treatment find ourselves in the “most vulnerable” category when it comes to exposure to Covid-19. I suspect that many of you are paying particular attention to ways that you can stay safe. It turns out that there might be some things we can do.
When I was undergoing chemo infusions every three weeks at the Cancer Center I would don a disposable tyvek painter’s suit that I picked up inexpensively at the hardware store. I would step into this suit in the hospital parking lot and when I was done with my 4 hour protocol I would remove the suit and toss it. This would save me the hassle of thinking I needed to change out of my clothes right away and wash them. Of course it might not have done any good, but it did give me peace of mind that I was taking some kind of additional protection other than wearing a mask and disposable gloves.
Another thing that I read about recently is the benefit of an annual flu vaccine. I think there has been a study or two about the lower incidence of more serious incidence, side effects and death among some European populations who stayed up to date with their annual flu vaccines. I know that Covid-19 is a different beast than the annual flu, but there might be some benefit to keeping up protection to the flu that strengthens our immune system in regards to Covid-19. Don’t quote me on this theory, but since my cancer diagnosis some 6 + years ago I have made it a point to keep up with annual flu shots and pneumonia vaccines since I knew my immune system was compromised. You may have noticed that all the drug stores and supermarkets are now advertising that the “walk in” flu shots are available for this year. No need to see a doctor or clinic.
One of the ways that we tend to let our guard down is by thinking that there is no one that we know of that has caught Covid-19, been sick or in the worst case scenario has died from this disease. I know I have caught myself getting a little careless because of this way of thinking. But I remind myself that one of our regular participants on these bi-monthly calls got caught up in the first Maui Memorial Hospital outbreak last March when he unwittingly had to go to the hospital for treatment related to his cancer diagnosis. He did contract the virus and subsequently died very shortly afterwards.
So, again I am not telling you this to cause alarm. Just take some extra precautions. I am certainly not saying you should stay away from doctors or the hospital. I, myself have to utilize the hospital facilities several times a month and also get blood drawn at a local lab quite frequently. I am not going to skip out on my cancer treatment protocol. But I am going to take whatever steps I can to protect myself.
None of us need feel like we are alone on this journey! Remember that Information is Power and the more information we share about our experience – the more powerful we are and we no longer feel like victims of our circumstance but masters of them instead.
Kenny Capps is a pretty remarkable individual … a runner his whole life, he was diagnosed with Multiple Myeloma in 2015. Only in his mid-40’s, Kenny was much concerned about Quality of Life during treatment. much like AnCan’s Founder, Rick Davis, Kenny returned to endurance exercise soon after the bone marrow transplants. In 2018, he ran the 1125 miles N. Carolina Mountain to Sea Trail in 54 days.
Kenny has now partnered with AnCan to establish our Blood Cancer Virtual Support Group with his non-profit, Throwing Bones. Throwing Bones is dedicated to improving quaity of life for people living with blood cancers through sponsoring healthy and active lifestyles. It recently launched an educational webinar series on Exrecise & Cancer, that you can hear at https://throwing-bones.org/cancer-active-education/ .
Just a few days later, Kenny recorded an intereview with Eshter Schorr, Patient Power Co-founder. While that has not yet been published, it is coming soon on http://www.patientpower.info/ I, for one, can’t wait!
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.
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?
