AnCan’s paramount stated purpose is to smooth the road for those coming along behind; and the quintessential shared experience must be entering hospice. It is rare a person at this stage of treatment is both alert and motivated to share the experience with others. Yet it is hardly surprising that a man dedicated to lifelong learning, research and educating others has committed to disseminate yet more knowledge in the hope it will make theirs and their loved ones’ lives easier.
There is good reason why Professor Bill Burhans has served on our Board and Advisory Board ….. because he is committed to helping and teaching for as long as he can. Please take this rare opportunity to listen to Prof Bill sharing his hospice experience. And Bill ….. may your journey always be easy and tranquil – we love you!!
In a recent email epistle from Rick, AnCan’s founder, he referenced the story of a 58 year old man diagnosed with Stage IV prostate cancer who found the strength to mountain climb some of the highest peaks on the planet, but he had serious bouts of depression. He revealed that he was helped by a form of counseling called Meaning-Centered Psychotherapy.
In the rush to avail themselves of the latest and greatest technologies and treatments, patients often find that there is little to help them cope with the psycho-spiritual aspects of life. As its name suggests, Meaning-Centered Psychotherapy is designed to enhance meaning, spiritual well-being, and quality of life for patients with advanced cancer. It aims to increase patients’ sense of meaning and spiritual well-being by bringing awareness to their choice of attitudes, and to their ability to connect and engage with life.
Bill Burhans provided an update on his status including: hospice (volunteer vs. commercial), methadone as a viable pain med, Dilaudid (hydromorphone) for breakout pain, hospice is revocable! The Book of Joy by the Dalai Lama, constipation can cause mid-body pain and even shortness of breath, signs of end-of-life, etc.He is feeling good right now and plans to live at least six to nine months! Other topics: Dennis and Carl scheduled for MRI for back and leg pain; CBD oil; acupuncture; oligometastic vs polymetastic cancer; presumed efficacy of Zytiga after Xtandi; how do you know if symptoms are due to progression or medication?; further discussion on SSDI and Medicare, etc.; bone biopsy experience at NIH
Some of you may recall Joe Boardman participating in our advanced prostate cancer group from the middle of last year. Joe’s unbelievable mountaineering feats with his wife and son are described below ….. any of us would be shouting these achievements from the mountaintop, but to do this on ADT – wow! Joe did, and continues to, shout his conquests from the top of the mountains ….
This interesting study coming from the renowned lab of Johann de Bono at the Institute for Cancer Research in the U.K. should help us understand why some patients may respond well to the promising PSMA-based therapeutics, like Lutetium 177-PSMA, and others may not.
Through analysis of prostate cancer samples, the authors report that the presence of prostate-specific membrane antigen (PSMA) is extremely variable both within one patient and between different patients. This may limit the usefulness of PSMA scans and PSMA-targeted therapies. They show for the first time that prostate cancers with defective DNA repair (e.g., BRCA, ATM mutations) produce more PSMA and so may respond better to PSMA-targeting treatments. The variability in PSMA production by prostate cancer cells was seen in both castrate sensitive and castrate resistant tumors.
Given the epidemic numbers of prostate cancer, there is a significant weekly news flow of trials, drug, discoveries and more. As Peter points out this week, your AnCan moderators dedicate a lot of time to keeping you informed. Join one of our 7 monthly PCa groups to benefit yourself.
I think I have been involved with Prostate Cancer Support groups in one capacity or another for some four years or more and one thing that stands out to me is that, like snowflakes, no two of us have identical disease. There are so many nuances to this crazy disease, and for those of us with more advanced disease it really behooves us to stay on top of the situation.
Great doctors will try to stay up-to-date on all the changes in treatment, diagnosis, genetic profiles etc. and treat us as individuals. Average medical professionals might tend to treat us as just “another” man with prostate cancer and use standard of care treatment that has been prescribed for years. This might be adequate for men with low grade disease which is the vast majority of us. But if prostate cancer is diagnosed at a more advanced and complex condiiton, or progresses, it is important that we see ourselves as individuals and be treated as such and not just as part of the herd.
Probably the last thing we wanted at this point in life was another career, but staying informed and advocating for ourselves as a man with prostate cancer is vital. The medical field is abuzz with new information every week and surprisingly much of it relates to prostate cancer, and that demands our attention. New treatment drugs and regimens are being approved even as you read this, and studies are indicating warnings and new information about old standards of treatment. How can anyone keep current in this environment?
The answer is community. Collectively we can manage this flow of new information that confronts us all. This is why AnCan has chosen the model of weekly support groups for men with advanced prostate cancer, our bi-monthly meetings for those with low and intermediate grade diagnoses and monthly gatherings for those who are being followed on Active Surveillance. Besides making ourselves available to the constant stream of men who are newly diagnosed, we seem to always find new information that is pertinent to many of us.
In addition to our own support group, I have been an active and engaged participant for the past 5-years at the annual PCRI (Prostate Cancer Research Institute) conference that is held at the LAX Marriot each September. If you have never attended, I would encourage you to check it out at PCRI.org. It is the largest patient oriented prostate cancer conference in the world. Very affordable, interactive and engaging, the subject matter is presented in understandable terms by a wide range of experts in all aspects of prostate cancer. If you are in attendance this year drop by our table in the lobby and say hello. I would love to meet you.
Reports on Bill Burhans and Richard Foody; moving from enzalutamide to abiraterone; choice of steroid with abi; ADT induced depression; spot radiation for mets; how come your penis woke up?; bone biopsy experience; find the right QB for your medical team; has ADT nailed your balance?
Dr. Oliver Sartor recently gave a presentation for a Medscape CME event that was titled, “Evaluating the Totality of Evidence: Management of Locally Advanced and Metastatic Prostate Cancer.” He included a slide showing the comparative side effect profiles of enzalutamide (Xtandi) – ENZA, apalutamide (Erleada) – APA and darolutamide – DARO. Darolutamide appears to have a more favorable side effect profile when compared to Xtandi or Erleada, especially with regard to fatigue and cognitive deficit. Darolutamide is expected to be approved by the FDA later this year.
This randomized, Open Label Phase 2 study published in JAMA Oncology compared various dosing schedules of prednisone and one for dexamethasone which are used with Zytiga (abiraterone acetate). As you may know, some form of steroid is necessary for use with Zytiga to compensate for its inhibition of natural cortisol production. If not compensated, patients on Zytiga would suffer from a metabolic syndrome known as mineralocorticoid excess (hyperaldosteronism) resulting in hypertension and hypokalemia (low potassium) which could lead to metabolic alkalosis, tetany (muscle cramping) and irregular heart rhythms.
The various prednisone regimens included 5mg once per day, 2.5mg twice per day, and 5mg twice per day. Dexamethasone was given as 0.5mg once per day. For each of these subgroups, the following percentage of patients had no mineralocorticoid excess (a good thing!):
Total lean body mass decreased in the prednisone groups and total body fat increased in the prednisone, 5 mg, twice daily and dexamethasone groups. In the dexamethasone group, there was an increase in serum insulin and insulin resistance, while total bone mineral density decreased.
