Our Board Chair and long time moderator, Peter Kafka, tells us how he fortuitoulsy got his Covid vaccination last week. For the first time, Peter adds the High Risk/Recurrent//Advanced Prostate Cancer Group to his Moderation repertoire this week.
POKEY MAN
i just returned this morning from getting my initial Covid-19 Moderna vaccination. Happy to report that it was an uneventful event. My anxiety level was increasing in recent days as our positive cases began to tick up considerably out here on little Maui in the middle of the Pacific ocean. Information here is slow to filter down and when I inquired about the shot I was tole that it would be some time in April or May since I was not yet 75 years old. Then, I got a surpise call from the Pacific Cancer Foundation which I volunteer for in a support and advocacy capacity and they told me that they could get me into their priority group today.
I am certainly not bragging about the above, but I mention it because there was absolutely no hesitation or concern in me about going forward with the vaccination. In the past 7-years I have been poked and scoped and proded more times then I can count. This kind of comes along with signing up for medical treatment for advanced prostate cancer. I understand that there may be as many as 40% of Americans who may decline getting a Covid-19 vaccination according to polls and predictions. And this is a personal choice in our society. But I doubt that those of us who find ourselves in this subset of Prostate Cancer guys would be so reluctant.
Over the years I have met men who chose not to enter into any kind of treatment for their more advanced prostate cancer diagnosis. Some of these men are still around and others not. I always wrestle with what my role is in this decision. I can encourage, I can strongly suggest that someone at least consult with a doctor who might be more pursuasive than me, and most of all I can point to myself as an example of a man who has not suffered from a host of medical treatments thus far. But in the end everyone must live or not with the decision they make.
The other day we had an AnCan Webinar with Dr. Jonathan Epstein, the go-to pathologist at Johns Hopkins for second opinions. He mentioned that he does actually consult with some of the men who reach out to him. This brought a smile to my face when I recalled a good friend who was leaning toward his own alternative treatments for his GL-4+3 diagnosis. I encouraged him to get a second opinion from Dr. Epstein. On his own he called the office and Dr. Epstein listened politely for 10 minutes while my friend described his alternative treatment protocol. Dr. Epstein responded, “That is all fine and good and you can continue with that protocol but you need to know that without medical intervention this disease can kill you!” That was all it took, a few weeks later he was getting radiation and he is doing fine and we are best of friends.
Do I have the song by Marvin Gaye stuck in your head now? Great! It is a classic after all, even if I did a slight remix.
At AnCan, we are all about supporting you. In fact, no matter what the condition, it’s all we do. We believe that advocacy, navigation, and support should have no barriers, ever. And I’m even prouder to say we accomplish that daily. Seeing your faces at each virtual support group, or as an attendee in one of our webinars is plenty enough for us, but it is nice to be acknowledged sometimes too!
If you want to know more of our “why”, I recommend you listen to Rick’s interview with Journal of Health Design. It is a perfect road map to where we started, where we are, and where we are going.
Don’t forget, even though it is Thanksgiving week, we wouldn’t spend it with anybody but you. Check out our event calendar and let us offer the support you need this holiday season, and beyond!
Once again, thank you Ms. Cullen for the shout out, and we’ll keep doing what we do best. Giving support to all!
Editor’s Choice: Tough one this week ….. very useful discussion on insurance issues, and we also learn some intersting things about Xgeva (…. see Chat), not to mention monotherapy AR blockers (rd)
Topics Discussed
PCF Scientific Retreat review; what to do when insuracne says ‘No’; managing abiraterone side effects; bone density and hormone therapy … is Xgeva a lifetime drug?; chemo may send PSA up .. THEN down!; do T levels matter with monotherapy androgen blockers?; Phase 1 trial experience with a glucocorticoid blocker; what type of SBRT to choose for gland ablation; does switching from an LHRH antagonist to agonist casue a flare?
rick (to Everyone): 5:10 PM: Prolia …. same as Xgeva Ancan –
rick (to Everyone): 5:12 PM: denosumab ….
Len Sierra (to Everyone): 5:16 PM: Patients need to be advised of the increased risk of bone loss and vertebral fracture when therapy is stopped. If denosumab needs to be stopped, it should be replaced by an alternative osteoporosis medication to help prevent rapid bone loss and risk of fractures (Symonds CMAJ April 2018).Oct 23, 2018
Jake Hannam (to Everyone): 5:18 PM: osteo-necrosis of the jaw (ONJ) is the real danger
John I (to Everyone): 5:19 PM: thanks for the research Len & Jake
Jim Ward (to Everyone): 5:58 PM: I’ve got a question re going to 1-month Lupron shot due to the shortage after consistently doing 3-month shots
Jim Ward (to Everyone): 6:07 PM: Thanks for the comments, guys. Sorry about my mic; don’t know what’s going on there
Ken A (to Everyone): 6:07 PM: whats your t -level Jim
Peter Kafka’s musing this week, looks at how invention and innvation can be a two-dged sword.
Please bear with me on these thoughts, because I don’t know where I am going but I think it important to consider. Yesterday my son and I went out to change the brake pads on my Toyota. I am the middle man in a three-generation tradition of shade tree mechanics. The notion is that “if it was put together by a human then it can be fixed by one”. I believe that many men carry the DIY gene, and women too. This notion changed a bit when our creations became super complex and computerized and we had to seek expert help in certain repairs that were beyond the scope of a You Tube video. But still the tradition carries on. The DIY gene has not mutated.
When it comes to the break down of the human body, or the interruption of certain natural cycles in the world at large this “Do It Yourself” gene springs into action. As a result, truly amazing achievements have been made in the field of medicine and science in recent years and there seems at times to be no end in sight. The notion is that if we “put our minds to it” we can fix anything. This is currently being played out with great intensity to find a vaccine for Covid-19.
I know my life has benefitted from the many advancements of science and medicine. I am not complaining. My life has been extended, like many millions for whatever purpose. But like many things, it is a two-edged sword. The extended life expectancy and health of human beings on this planet has been at the expense of many other life forms in the plant and animal kingdoms. This thought should give anyone great pause. Perhaps I should leave it there. Make of this paradox what you will.
Recently a very good friend of AnCan’s introduced me to Dr. Moyez Jiwad the Co-Editor for The Journal of Health Design. Dr. Jiwad has a podcast interviewing interesting and unusual actors in the healthcare field. I guess he concluded that “Yours Truly” qualified on both accounts, so Dr. J and I sat down about 3 weeks ago – late on a Sunday afternoon, early Monday morning for him in Oz.
The first time I listened to one of Moyez’ interviews, and many are worth a listen, his Irish accent stood right out – probably because I was not expecting to hear those gentle, melodic tones from a Kenyan born Asian living in Melbourne, Australia!
Dr. J was a delight to speak with, and you can hear the results by listening to our audio interview. https://www.journalofhealthdesign.com/JHD/podcasts/view/319 We delve into what motivated me to work in this field and how AnCan came about.
Peter Kafka’s musing this week are born in Maui amd quicky emanate to encompass medical and natural challenges all the way to the mainland. (rd)
Sometimes I feel like I have my hand on a “Mouse” and I am continually zooming in and out, changing perspective on my own issues and those of much larger pictures. I could easily focus in on my own challenges and the fact that our local hospital appears to be in the midst of a second serious Covid-19 outbreak effecting some two dozen patients and an equal number of staff this time around. Normally I would not care too much, but since this is our only community hospital and I need to access it on a regular basis for my own treatment protocol it puts me in an awkward position.
But when I zoom out a bit, I can easily be more concerned about the city and count of Honolulu on Oahu where one of the most rapid and significant increases in Covid-19 infection rates in the US is occurring at present. But then I expand my vision a bit and cross the Pacific and note that the many residents of the Western states, and most particularly California are in the midst of a second serious thereat to life and livelihood, the extreme heat and wildfire season.
Normally I could say that these fires are too far away from me to matter. But a very good friend of mine who I met 4-years ago at UCSF while doing radiation for our respective prostate cancers, lives smack dab in the middle of what is now one of the largest fires in California history. When I spoke to, he and his wife earlier in the week they had reported that their house was standing at that time, but that the fire was igniting some other structures on their property. I don’t have an update, but when I search Google Maps, I can follow their road up the mountain and see that they are indeed surrounded by fire.
I zoom out a bit further and see that we are in the midst of hurricane season, that our country has yet to adequately manage this pandemic and we lead the world in terms of disease and deaths. Then further afield there are many parts of the world suffering from financial ruin and food shortages on top of everything. And then the ultimate click of the mouse greeted me this morning to warn of a 0.5 percent chance of our Earth being hit by an asteroid on the day before election day in November!
All this kind of helps me see that my little struggle with Prostate Cancer is not the center of the universe. I think it is helpful to zoom out to the bigger picture from time to time and keep perspective. One of the reasons I stay so engaged with our AnCan virtual online support meetings is to remember that others have significant issues and concerns that need attention and that I am big enough to step outside and beyond my little world and help another.
