PLEASE NOTE – for reasons best known to GtM, we only have audio this week. Nor does there appear to have been any use of the Chat Window.
Editor’s Pick: LHRH drugs and mental anguish – a topic near and dear to my heart. I consider myself fortunate to have known ‘The Black Dog’, as Churchill called depression, before I went on Lupron. That was a blessing for me in that it was much esier for me to handle and absorb. My heart goes out to men who suffer depression &/or anxiety with no prior experience. (rd)
Topics Discussed:
condolences to Jim Ward; who’s at risk from COVID-19?; low PSA, soft -tissue PCa endures for 20 years; multiple treatments at one hospital visit; LHRH drugs cause anxiety and depression; medical marijuana; radiating the prostate in advanced disease; with recurrence, at what PSA level should you scan?; frequency and type of scans to monitor advanced disease
In the dim, distant past of 2011, or was it 2012, I had just been kicked out the support group I co-moderated by a very insecure lead. Rather than the one-on-one interview style he practiced that made the large, weekly group feel they were eavesdropping on a private conversation, I worked hard to promote conversation and bring everyone into play. If the back-and-forth developed a life of its own, moderation was successful. Like a tugboat, moderators could just nudge a little here and there to keep discussion on track while sprinkling information and education into the wake.
So when a good buddy of mine suggested we start an online TV channel, I took him seriously. My friend had been in the virtual meetings world pretty much since inception and encouraged me to explore. I, however, had no interest in talking at an audience – I wanted to converse and interact with it. Support groups were much closer to my virtual ideal than a TV Channel. Moreover, virtual support groups tackled three issues where physical groups got a resounding ’F’.
Geographical ‘disabilities’ were removed – no one was restricted by distance or remote location
Physical disabilities evaporated – everyone could join no matter their state of mobility
Social disabilities faded – those who felt uncomfortable in a physical group or suffered from agoraphobia could attend, and those who were just plain shy could ‘lurk’.
To my amazement in 2012, I found only two (2) virtual support groups on the world wide web; one for post-partum depression, and the other for dieting. In the two-dimensional virtual world of written forums, there were options and I quickly became a celebrity. By providing solid experience and guidance – never medical advice!! – many sought my input. Then I discovered a telephone support group based out of the northern Midwest …. and from thereon history was made.
As possibly the first peer-led support group for any condition, I turned what originated as a men’s psycho-social support come drinking club into a bona fide, condition driven, virtual support group. By advertising on the written group forums, attendance grew rapidly. We went from one to two monthly meetings. Then we split the group by severity of disease – newbies did not want to be chatting with those suffering advanced disease. And soon we had to split again as numbers exceed 30+ participants per group. Within a couple of years, we had four then six groups each month; and, we received endorsements and co-sponsorship from a major support and education non-profit.
The phone platform also seemed inadequate just as virtual platforms became affordable. No longer did you have to commit thousands of dollars to host on WebEx when GoToMeeting and then Zoom catered to the individual consumer. Adding visuals created yet another dimension, bringing the virtual support group experience even closer to a physical meeting. Video was always optional, and you could join by phone as well as online – we strove to maintain the lowest barriers to entry. And our meetings were always free and drop-in … no registration required.
Gradually our moderators learned best practices – how to keep a meeting moving; how to avoid people talking over each other; how to ‘listen’; how to bring everyone into the virtual group discussion. In 2016, our vision got formalized when we founded a non-profit, Answer Cancer Foundation, starting with the six groups then in existence. While all for one condition, my vision was much wider.
We knew that if it worked for the condition we were living with, this same experience could work for other illnesses and conditions …. especially for rare diseases where even in the best circumstances gathering a physical support group was challenging. And for conditions beyond cancer …. and for more than just those living with the condition – like caregivers. In 2019, Answer Cancer Foundation became AnCanas we launched a multiple sclerosis group. And as I write today, we host more than 20 meetings each month for cancer and non-cancer. We are proud to offer two virtual groups for rare diseases, and about to introduce new virtual meetings for blood cancers, and for ovarian cancer.
So here we are in 2020, in the midst of a global pandemic living within the parameter of social distancing. Many are suddenly recognizing the value of virtual meeting places. Some, like my nemesis the lead moderator mentioned in the first paragraph, had the audacity to tell a telcon of support group facilitators last week, that Zoom is inexpensive and everyone’s answer; he had tried it for the first time earlier in the week. I could not resist piping up that AnCan currently hosts nine (9) virtual meetings per month just for our cancer; that we have been doing so for eight years with our co-sponsor who, by the way, was hosting the telcon; and, that we would be delighted to share our know-how with anyone that needed help. And oh yes … that GoToMeeting offered a free room over the next 3 months for anyone that needed!
AnCan now serves more communities than just cancer, and certainly a lot more than the community with which we started – prostate cancer. That said, we are delighted this week to have just expanded to include blood cancers and ovarian cancer.
Our vision was always to reach out to conditions that compromised mobility, so starting our Multiple Sclerosis group last Fall was a milestone. Personally, I know little about MS but am learning slowly especially from lurking in the MS Virtual Group as we train the moderators – although their success may make that redundant very soon!
This article on Medpage Today caight my eye …..it points out that compromised cognition is one of the first signs of MS. It also mentions that disease progression is observed as more rapid in non-caucasian ethnic groups.
AnCan encourages our MS readership to sign up to our blog and submit posts to help educate us all!
Our Advisory Board Member, Howard Wolinsky’s latest article on Medpage Today tiptoes around a very sensitive issue while making an excellent point. Place a bunch of different medical specialties in the same room to make a decision, the so called MultiD Approach, and you go a long way to neutralize a factor that can often act against patients’ best interests.
There’s an elephant gambolling through Howard’s article, acknowledged but not mentioned in so many words … and here’s the clue. The ‘MultiD’ approach appears to be restricted to Centers of Excellence and Medical Institutions where, as Dr. Kuban mentions – she doesn’t get paid for each patient she sees!
We are talking “financial conflict of interest”. That’s the same bad actor lurking in the background and chuckling as it gets the PSA test rather than the physician blamed for ‘overtreatment’. How often do you hear a community urologic oncologist recommending radiation – or a community radiation oncologist pushing surgery? These practitioners understand each others specialties and their side effects well enough, so it’s tough to buy the argument that it’s because they know their specialty best. Here at AnCan we would argue it’s because these docs earn more money by treating the man themselves – the patients’ interests get subordinated to the doctors’ pockets.
AnCan totally endorses the MultiD Approach – but wonders how it will ever be implemented outside the salaried environment of large medical institutions and Centers of Excellence??.
Editor’s Pick: Does cancer compromise your immune system – surprisingly there is debate!
Topics Discussed
Starting LHRH on recurrence; Intermittent Hormone Therapy; Darolutamide; Chemo vs 2nd Line Anti-androgen; getting PET scans approved; give abiraterone time; CARD trial – Jevtana; abi monotherapy?; drinking water reduced creatinine; does cancer compromise your immune system?; adding surgery to RT + ADT; questions for rad onc on starting salvage radiation
For our prostate cancer followers, patients & caregivers, PCRI announced yesterday that its mid-year one-day conference on Saturday, March 28 will now be held as a virtual gathering with a live FREE stream …. all you need do is register here.
The conference features as always the dynamic variety duo, Drs. Mark Moyad and Mark Scholz. They will be joined by 3 excellent speakers:
GU Medical Oncologists, Dr. Evan YU from Seatle Cancer Alliance/ University of Washington Med School
Radiation Oncologist, Dr. Jeffrey Demanes from UCLA
Genomic specialist, Dr. Joannne Wiedhaas, UCLA
Each speaker will be followed by Q&A fielding your written questions that can be submitted ahead of time. And it will conclude with 90′ of Q&A with Moyad & Scholtz.
This is a terrific opportunity for you to ask the experts all those questions your own medical team has not answered completely and/or we are not fielding in one of our NINE, yes 9!, monthly VIRTUAL PC support groups. AND this crew will respond to personal situations and provide somewhat filtered medical advice that we cannot do.
That should cover it all, but just in case not, here again is the PCRI Conference website:
Like many of you this week, I have been reading multiple articles about how the corona virus may effect those living with cancer and how best to protect ourselves. Many of us who did not take this threat too seriously 3 weeks ago, are now reevaluating although I remind everyone that it may be no worse than the influenza threat that kills many each year – albeit we don’t read about it daily. WHO estimates between 250,000 – 650,000 die from influenza annually.
Amongst several articles that are in my inbox, I have a couple of first hand experiences. The first is from Shira Zwebner, a regular contributor to the CURE website, that you’ll find here; and the second is by our Board Chair Peter Kafka, reprinted from his meeting reminder to the virtual group Peter moderates. (rd – apologies for all the typos first time around; forgot to proof!!)
What A Difference A Week Makes
All of the sudden the world is thrust into a new paradigm in reaction to the onslaught of the Covid-19 coronavirus. I suspect that many of us can tell stories about how our lives and communities are already being impacted by this new threat. It looks like we are all in for quite a ride for some time to come. Some might discount these events or downplay the seriousness of the virus, but it can’t be denied that there is an overriding sense of fear and anxiety in many quarters.
How does this relate to those of us dealing with cancer? Oddly enough there are many crossovers and “take homes”. Who among us did not feel fear and anxiety and a sense that our world as we had known it was coming to an end when we were first diagnosed with this cancer? I know for myself that fear was a dominant feeling. Because it was all so new and I was unprepared and uninformed my emotional response was quite out of control. Fortunately, I found support quickly and was led to experts in the field who could set me on a steady course and explain exactly what was going on and help put things in perspective.
Most of us have found that our worlds did not completely fall apart. Yes, many things may have changed – they certainly have for me and those closely around me. But life has gone on and adjustments have been made. We humans are remarkably resilient creatures and can adapt to amazing challenges and circumstances. For myself, I have just embarked upon a heavy-duty regimen of chemotherapy for my aggressive advanced prostate cancer. Perfect timing to put myself into a situation where my immune system will be further compromised by the chemotherapy infusions. And what a time to have to show up at our local hospital every three weeks for a day of infusions. So much for my luck.
I guess I am one of the lucky ones who has jumped to the head of the line in the high-risk category for dying from Covid-19 Coronavirus, over 70 years old with cancer and a compromised immune system. But somehow, I am just not over consumed by this thought at the moment. I am not going to be cavalier and take stupid risks, but I can really only deal with one big threat at a time and for me it happens to be the prostate cancer. I think my ongoing 6-year journey with this disease has put me in a mindset of preparedness. Fear is no longer driving my decisions and actions. Understanding and intelligence rule the day for me.
The coronavirus outbreak has many patients worrying about whether they will be able to continue receiving their medications. The FDA is actively working on ensuring that this doesn’t happen and while they have already made some progress, they will continue to take additional measures. You can read the latest FDA Supply Chain Update in its entirety here.
The information below represents the more salient points of that update, IMO:
Since January 24, the FDA has been in touch with more than 180 manufacturers of human drugs, not only to remind them of applicable legal requirements for notifying the FDA of any anticipated supply disruptions, but also asking them to evaluate their entire supply chain, including active pharmaceutical ingredients (the main ingredient in the drug and part that produces the intended effects, e.g., acetaminophen) and other components manufactured in China.
Also, as part of our efforts, the FDA has identified about 20 other drugs, which solely source their active pharmaceutical ingredients or finished drug products from China. We have been in contact with those firms to assess whether they face any drug shortage risks due to the outbreak. None of these firms have reported any shortage to date. Also, these drugs are considered non-critical drugs.
The FDA is using all our existing authorities to address COVID-19, and we welcome the opportunity to work with Congress to further strengthen our response capabilities and emergency preparedness. There are four specific proposals included in the President’s budget that would better equip the FDA to prevent or mitigate medical product shortages.
Lengthen Expiration Dates to Mitigate Critical Human Drug Shortages: Shortages of certain critical drugs can be exacerbated when drugs must be discarded because they exceed a labeled shelf-life due to unnecessarily short expiration dates. By expanding the FDA’s authority to require, when likely to help prevent or mitigate a shortage, that an applicant evaluate, submit studies to the FDA, and label a product with the longest possible expiration date that the FDA agrees is scientifically justified, there could be more supply available to alleviate the drug shortage or the severity of a shortage.
Improve Critical Infrastructure by Requiring Risk Management Plans: Enabling the FDA to require application holders of certain drugs to conduct periodic risk assessments to identify the vulnerabilities in their manufacturing supply chain (inclusive of contract manufacturing facilities), and develop plans to mitigate the risks associated with the identified vulnerabilities would enable the FDA to strengthen the supply chain by integrating contingencies for emergency situations. Currently, many medical product manufacturers lack plans to assess and address vulnerabilities in their manufacturing supply chain, putting them, and American patients, at risk for drug supply disruptions following disasters (e.g., hurricanes) or in other circumstances.
Improve Critical Infrastructure through Improved Data Sharing and Require More Accurate Supply Chain Information: Empowering the FDA to require information to assess critical infrastructure, as well as manufacturing quality and capacity, would facilitate more accurate and timely supply chain monitoring and improve our ability to recognize shortage signals.
Establish Reporting Requirements for Device Manufacturers: The FDA does not have the same authorities for medical device shortages as it does for drugs and biological products. Among other things, the FDA proposes to require that firms notify the agency of an anticipated meaningful interruption in the supply of an essential device; require all manufacturers of devices determined to be essential to periodically provide the FDA with information about the manufacturing capacity of the essential devices they manufacture
I am copying a post recently received from New PCI publcizing a short ASCO survey on how you embrace exercise and diet. As many know, AnCan strongly endorses exercise as part of any cancer management program; and sensible diet may also be significant and rarely hurts. I have taken the survey and encourage anyone previously diagnosed with any type of cancer to do so. (rd)
The American Society of Clinical Oncology (ASCO) has put together a brief research survey to learn more about patients’ experiences with cancer care. Specifically, ASCO is interested in patient’s perspectives on how things like diet, exercise, and weight management are incorporated into cancer care.
The survey should take most people no more than 10 minutes maximum to complete. All questions are optional, and ASCO has stated clearly that no personally identifiable information will be collected.
If you are an individual with a personal history of prostate cancer (or cancer of any other type), please click here to take this patient survey. Thanks for your help to ASCO in seeking to improve cancer care.
If you know others who are > 18 years of age and who have been diagnosed with any form of cancer, ASCO would also appreciate it if you passed information about this survey on to those people too. ASCO is seeking the widest possible range of responses to this survey from the cancer patient community.
Our Board Member and Moderator, Ken Anderson resides in Phoenix and is living with metastatic prostate cancer. He recently uncovered this article on a longstanding controversy over why many trials are not well reported. (rd)
Seems the topic of clinical research and the data identified when the trials conclude has been around for years but one that I have just recently been forced into exploring in depth. At this point in my prostate cancer journey, certain second line hormone threapy drugs, that I would have hoped extend my life for years, have failed after just a couple months. This seems to be true for others and at the moment no one seems to know why. Is it from starting up front with aggressive treatments like chemotherapy? That may have forced my cancer to change just enough so something within the cancer cell activated and my cancer no longer has the required structure to allow these newer drugs to help extend life.
At this time I am fully aware that managing disease progression and cancer burden is the goal. As we move through these drugs and exhaust the Standard of Care outlined by our medical oncologists, our next option is to look for clinical trials. The data from these trials, both good and bad, has value. I can only hope that even when the data is not published, it is at minimum shared among our finest medical institutions and doctors.
An article published in Science this past month helps outline some of the Centers of Excellence that are doing a fine job with making the data available and others that are not doing so well. Find the article here.
We can only hope that the FDA and the NIH will start to use the power they do have to force more active reporting. The data from these trials, no matter the outcome, should be published in a timely manner.
