Should you monitor your testosterone level ….. ? The group consider and discuss. (Tx for all b-day wishes! rd)
Topics Discussed
GU med onc places Mx man on LHRH alone???; Intermittent Hormone Therapy considerations; monitoring Testosterone levels; using different labs; trigger finger and HT; Bipolar Androgen Therapy; finding 2nd opinions remotely; when does a symptom warrant reporting; PSMA scanning tests; dealing with Brain Fog
Chat Log
Herb Geller (to Everyone): 6:15 PM: But yes, ACTH might be a better indicator.
Mark Perloe (to Everyone): 6:20 PM: I’m on Zytiga and prednisone. Dr. Turner drew a cortisol level and I got a call that my cortisone was low, but prednisone minimally affects blood cortisol level. I would think that ACTH would be a better marker. BP is normal, and I’m feeling ok. We dropped Zytiga to 500 mg/day with food. Turns out a recent study suggested lower DHEAS from adrenal with 500 vs 1000mg the standard dose. I appreciated cutting the cost in half as well.
John I (to Everyone): 6:29 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/amir-mortazavi
Herb Geller (to Everyone): 6:39 PM: abiraterone – trade name ZYTIGA
Jake Hannam (to Everyone): 6:39 PM: Zytiga
Mark Perloe (to Everyone): 6:42 PM: Also on Zytiga+prednisone.
Frank Fabish (to Everyone): 6:52 PM: thank you all
AnCan – rick (to Frank Fabish): 6:54 PM: Pleasure Frank ….. keep coming back
Frank Fabish (to Everyone): 6:55 PM: intend to. i’m pleased with this first meeting
John I (to Everyone): 7:20 PM: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
Herb Geller (to Everyone): 7:21 PM: https://cdmrp.army.mil/pcrp/research_highlights/20denmeade_highlight.aspx
Ken A (to Everyone): 7:24 PM: MDA stated BAT is not a good idea and they have had no success.
Mark Perloe (to Everyone): 7:48 PM: PSMA-rh study at Emory
John I (to Everyone): 7:57 PM: Here’s the org I just mentioned: http://dbsaalliance.org/
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
Things don’t always go the way we plan … or want.- from the recent elections to our health, to just taking care of daily biz. We have to be careful how that impacts the way we interact with others. Peter’s thoughts crystalllize how our emotions can impact many more than just us (rd)
“WINNING AND LOSING”
As I sit at my desk, it is Monday morning November 2nd the day before election day. I woke up this morning thinking of this theme and how applicable it is to those of us dealing with a cancer diagnosis. In our case a diagnosis of Prostate Cancer.
For 24 years my final career was as a maintenance supervisor for Haleakala National Park. One of my duties in that position was to be a Heli-Manager. This involved coordinating and managing the ground operations for the periodic use of contract helicopters that we used to transport firewood and other materials to the Park’s historic backcountry cabins. This job had many inherent dangers including hooking up a swivel cable to the belly of a helicopter hovering just a foot or two over my head, loading cargo nets with materials to be sling loaded to the drop sites, calculating the weights of each load, ensuring the safety of myself and that of the rest of my ground crew and communicating by radio to the pilot and others of my crew on the receiving end of the cargo. It was a lot to keep track of, and it required a high level of intensity and concentration.
One Monday morning during this operation one of my employees came to work, and his home state professional football team had lost in the playoffs the day before. He was pretty bummed out. So bummed out that I didn’t take it seriously at first. Afterall, football was just a game in my mind. Life goes on. But in his mind, it was pretty close to the end of the world. I tried my best to get him to “let it go”. But he would not drop his gloomy attitude of defeat. It was so pervasive in him and he would not stop talking about it to the rest of the crew. It was becoming a big distraction and for the safety of our task at hand I had to send him off to do another job on his own far away from our helicopter operations.
I bring up this story because it is all too easy to associate a cancer diagnosis with somehow losing. This can be an insidious and infectious attitude that can not only weigh down ourselves, but those around us including family, friends and even our medical support community. An exaggerated negative attitude and clinging to the feeling that one has “lost” can be a dangerous distraction.
In the bigger picture, we have not lost. Our bodies might be quite challenged due to our diagnosis, but we still have a vital part to play in our family, our workplace, our community and it is NOT to infect all of these others with a bummed-out attitude lest we drive them away, and we quickly will.
Our attitude, like diet and exercise is one of the key things that we have absolute control over. In my own experience if I find myself starting to wake up on the wrong side of the bed, I rearrange the furniture and put THAT side of the bed against the wall so that I have to wake up on the RIGHT side. Bottom line, take responsibility for your own attitude!
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.
Sometime over the past month, a man attended one of AnCan’s video chat, virtual support groups with a big problem on his mind. This man had been on hormone therapy – more precisely androgen deprivation therapy, for close to 12 months and he was suffering, physically and mentally from having little or no testosterone in his body. He was fatigued, had “Lupron Brain” – brain fog, and was emotionally on the edge … all the time. Moreover, & understandably, he didn’t want to let his employer and workmates know he lived with advanced cancer. Result ….. he unintentionally upset colleagues, couldn’t complete his work tasks and …. received an offiicial employment warning.
This fellow came to us for support, and the best we could do was to suggest he speak to Human Resources under confidentialty; and/or seek an employment lawyer. What we didn’t know is that there is a non-profit out there to assist … and in their own words, this situation is their bread and butter.
Cancer & Careers is dedicated to tackling cancer-related problems in the workplace. Whether involving healthcare, employment, job seeking, employment law, Covid, or working through treatment – Cancer and Careers will help you resolve any of these issues and more, both one on one and through webinars, handouts, and other educational supplements. Check out their website and don’t hesitate to reach out to them if you have a question that needs answering.
What’s more, Brian Morvant, a senior program coordinator at Cancer & Careers told us just today in a presentation for our Male Breast Cancer Virtual Support Group that Cancer & Careers still offers a maximum grant of $500 per family experiencing financial challenges … apply now!
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