Peter Kafka’s latest thoughts on men, risk and clinical trials!
I was reading the other day about the challenges of getting an adequate number of men to subscribe and participate in certain clinical trials for prostate treatment. It had to do with “risk”. In general, men are bigger risk takers than women. In my career with the National Park Service I was always dealing with the seeming dichotomy between safety and risk. Working under three successive female superintendents I was at times admonished for not putting “safety first”. But without a certain amount of risk, nothing gets accomplished.
I am not certain where I am going with this thought, but I believe that the willingness of men to take risks has been a great benefit to the advancement of medical science on many fronts. Prostate cancer detection and treatment is very different than it was even five years ago and a lot of this has to do with the willingness of men to take risks. Even the great numbers of men today who choose to follow the path of “active surveillance” rather than having their prostate surgically removed or radiated is indicative of a willingness to “risk” living with cancer.
I know for myself that I am going to be faced with some treatment decisions in the coming year. The decision tree is always a challenge to climb. Which limb is sturdy enough to hold my weight? I think that this is one of the reasons I so enjoy working and listening to others in our support community. Sharing our individual experiences on this journey is enlightening. There are not many rights and wrongs, but there are plenty of rights and lefts. And what is a right move for you might well be a left move for me.
This study looked at the effect of two treatments (Zytiga (abiraterone) vs. Xtandi (enzalutamide)) for metastatic castration-resistant prostate cancer (mCRPC) on patient quality of life over 12 mo. Using established questionnaires, patients reported that they experienced less fatigue and cognitive impairments (including memory loss and reduced thinking abilities) with abiraterone acetate plus prednisone than with enzalutamide.
The study did not compare efficacy of each treatment, only quality of life issues as mentioned above. This finding occurred early after treatment initiation. This difference should be considered when choosing treatment, according to the authors.
BRCA discussion – PROfound, treatment etc; darolutamide; can you measure bone tumors from scans; comparing scanning techniques for disease progression; talk generalities or specifics to your doctor; managing Gleason 9 disease; bicalutamide androgen withdrawal symptoms; Provenge; anticipating symptomatic progression; mindfulness meditation; proton pencil beam radiation therapy PBRT; leg cramps; carboplatin + etoposide for small cell like disease
One of my fellow Foundation Medicine Patient Community Council members, Karen Peterson, recently featured on the Today program speaking about how she self-advocated to receive genomic testing … that in turn led to very successful precision medicine treatment with an immuno-oncology drug. You can watch Karen here .
No matter what the chronic condition with which you live, this is a wonderful example of the value in informing yourself then advocating on your own behalf to your medical team. If AnCan’s tag line was not “Advocacy – Navigation – Support”, it would be “You Are Your Best Advocate!”
Btw, if you missed our recent webinar by Dr. Larry Fond on Immuno-Oncology, replay the recording and download the deck at https://ancan.org/5th-monday-webinar-dr-larry-fong-explains-immuno-oncology-mon-sept-30-8pm-edt/
The subject of testosterone (T) comes up frequently on AnCan’s virtual prostate cancer support groups.
Testosterone is thought to “feed” prostate cancer cells so the goal of antiandrogen therapy (ADT) is to reduce the amount of testosterone circulating in your blood, preferably to <20 ng/dL Lupron, Firmagon and similar agents do a great job of suppressing testosterone, at least for a while. Unfortunately, ADT can have unpleasant side effects (fatigue, hot flashes, muscle atrophy, loss of libido, etc.) but the severity and tolerability of these can vary from man to man.
Some men are fortunate enough to try “intermittent” ADT. The goal here is to get a break from ADT side effects and to increase testosterone levels (and libido). It takes time for ADT side effects to wear off and for testosterone levels to rise. Again this can vary from man to man and depends upon a number of factors. So the question arises: “What is ‘normal’ testosterone?
According to WebMD, a normal testosterone level depends on your gender and age.
Normal total testosterone results in adult men:
Ages 19 to 49 249 – 836 nanograms per deciliter (ng/dL)
Ages 50 and older 193 – 740 ng/dL
MSKCC recently published a timely article on testosterone recovery:
Highlights, summarized by Rick Davis, are:
Men on ADT for more than 6 months – most of us – are 4 times more likely to remain at castrate levels after 2 years
If your baseline was less than 400, you are 3 times more likely to remain at castrate level
The good news is ” at the two-year mark after ADT cessation ……. 8 percent of patients remained castrate, 76 percent returned to a normal TT level (above 300 ng/dL), and 51 percent recovered baseline TT.”
Is it possible to know too much? Of course not! That’s a rhetorical question.
Knowledge is always a good thing — almost always, anyway. We accumulate knowledge with each day of life. We learn and gather information from a variety of sources (our parents and teachers, books, educational seminars, friends and coworkers, the media and even — gasp — the Internet). But you already knew that, didn’t you?
Unfortunately, our sources of information aren’t always correct – even if well-meaning. Some information is incomplete while some is just plain wrong. More likely, though, it becomes outdated and obsolete. Technology marches on, sometimes faster than our ability to grasp it. So we must be careful.
Sometimes though, it can be overwhelming and, unfortunately, this can lead to frustration. We can even use it to make bad decisions if we’re not prudent. This is especially true of medical knowledge.
By its very nature, medical information is often complex and obtuse – especially to the Everyday Joe like you and me. Even highly educated physicians and researchers can get overwhelmed. That’s one of the reasons we see so much specialization these days. You wouldn’t go to your dentist to fix your broken leg, would you? Likewise, you wouldn’t want your cardiologist to fix your toothache. At least, I wouldn’t. Sadly, the days of Marcus Welby, M.D. are long gone.
The more complex our medical problem, the more we need a specialist. We can only hope that he or she keeps up with the latest published research. This is where our own knowledge can be priceless. We may not know or understand all the specifics but we can know enough to go in well-armed. At the very least, we’ll know what questions to ask. Online virtual support groups like those offered by AnCan are a good place to start.
So, by all means, read and listen and learn but never assume you know it all. Keep your physician on his toes.
As Sgt. Esterhaus from TV’s Hill Street Blues would say “Hey! Let’s be careful out there.”
Tributes to Dr. William ‘Bill’ Burhans PhD https://ancan.org/professor-bill-r-i-p/ ; Medicare coverage for Foundation Medicine genomic sequencing tests; PARP-I niraparib gets FDA breakthrough status; is there a cure in sight for metastatic PCa?; is it worthwhile to genomically sequence Nx (lymphatic) disease?; starting enzalutamide/Xtandi; testosterone recovery post-ADT
As we all know, there is much more to mounting an offense against cancer or any other serious or chronic illness than just pharmacotherapy or radiation or surgery. An integrated approach that combines traditional medical interventions with lifestyle changes such as exercise, diet, yoga and meditation practice can play a vital role in strengthening our mind, body and spirit.
The attached document is a compilation of many online resources (graciously shared by Kevin Berrill, LCSW, at Ann’s Place in Danbury, CT) that offer mostly free access to computer and smartphone apps offering help with the practice of Mindfulness and Mindful Meditation. It includes resources for all levels of practice, some guided, some with music, some with both.
One of my favorites is called Insight Timer (https://insighttimer.com/) that has hundreds of free recordings to help you practice meditating, relaxing, gratitude, and sleep, to name a few. They can be anywhere from a few minutes long to over an hour, depending on the time you have available.
When patients with advanced prostate cancer become metastatic, castrate resistant (mCRPC), their cancer cells sometimes morph from the typical “adenocarcinoma” to the far more aggressive and difficult to treat “high grade neuroendocrine” subtype. Historically, the prognosis for such patients has been poor. But this appears to be changing. A recent Phase II “basket trial” revealed far superior results for such patients who were treated with dual immunotherapy consisting of ipilimumab (Yervoy) and nivolumab (Opdivo), two immunotherapy drugs already FDA-approved for use in other cancers. A basket trial is one which includes patients with different tumor types (prostate, lung, liver, etc.) that have a common characteristic, such as a gene mutation or, in this case, a neuroendocrine cell morphology.
The clinical benefit rate (response or stable disease for more than 6 months) was 42% in patients with high-grade tumors. The 6-month progression-free survival rate was 31%, and the median overall survival was more than 11 months.
“These outcomes compare favorably with historical patients, where the clinical benefit rate at 6 months is about 20% for patients with refractory tumors, the 6-month progression-free survival is around 10%, and the median overall survival is around 3 months,” said Dr. Sandip Patel (UCSD).
The combination regimen was well tolerated. The most common overall toxicities were fatigue (30%) and nausea (27%). The most frequent immune-related toxicities of any grade were hypothyroidism (31.3%) and aspartate transaminase elevation (25%). The most common grade 3 and immune-related toxicities were liver function abnormalities (9%) and colitis (6%).
With heavy heart, I write this sad post to report my dear friend, Professor Bill Burhans, AnCan’s trusted Board and Advisory Board Member, and mentor and confidant to several readers, passed last Wednesday, Oct 9 after bravely managing his prostate cancer for six (6) years. He was 67 years old.
Bill was a remarkable man with a heart of gold who could not do enough to help others. Much of his life philosophy was developed through the loss of his mother to cancer in Bill’s teens, no doubt BRCA-induced; it left him and a younger sister raising the three youngest siblings. Bill’s caregiving for his mother significantly influenced how he responded to his own disease where it was of utmost importance to him that he did not create a burden for his immediate family.
Bill had a significant amount of cancer in his own family; that may have influenced his decision to become a cancer researcher although he once told me that was not his first choice of career; I seem to recall that may have had more to do with his love of nature and the outdoors. While he lived in Buffalo, teaching and researching at Roswell Park Cancer Institute since 1992, Bill’s heart lay in Vermont where he was raised and studied at the University of Vermont, both as an undergraduate and for his Ph.D. In later years, his favorite location for hiking, back-packing, X-country skiing, snow shoeing and stacking wood was in the Northeast Kingdom at his brother, Buzz’s house on The Hill although his siblings lived in the southern part of the state.
It was there that I first hung out with Professor Bill on a trip filled with synchronicity. One of my own rowing coaches, with the same nickname as Bill’s lifelong best buddy and brother, Buzz, was to be found teaching on a lake no more than 5 minutes from The Hill. Then it turned out that the future in-laws of another close friend and metastatic prostate cancer veteran from Marin, Ca. were also good friends of Buzz and his wife, Chris, and ran a maple syrup farm close by.
Bill and I first met through the UsTOO Prostate Cancer Forum on Inspire where Bill’s inimitable handle was @buffalowill ! His initial radiation treatment left Bill with significant damage to his urinary tract for the balance of his life, plaguing him with frequent serious UTI’s that often led to hospitalization. Bill hypothesized that his BRCA2 mutated genes made him way more susceptible to radiation damage than the normal patient; for his last 3 years or more, Bill had an intrathecal pain pump installed. Soon after diagnosis, Bill opted to germline test for inherited mutations based on his family history and was found positive for BRCA2 that tragically he has passed on. For several years Bill had been collaborating on the development of PARP-Inhibitors with other renown medical researchers like Dr. Johan de Bono at the Royal Marsden in the UK. Knowing the effectiveness of this drug category for BRCA driven disease, Bill argued to his own Roswell Park tumor board that they should prescribe olaparib off-label which they did. Bill got 2-3 years from suggesting this strategy.
Later on, when Bill switched his quarterback to Dr. Atish Choudhury at Dana Farber Cancer Institute in Boston, he participated in a clinical trial for an ATM inhibitor with a Parp-I (olaparib again). This time it was Dr. B’s own lab at Roswell Park that had discovered the key pathway through which the ATM inhibitor operated. Bill rapidly became a major celebrity on his visits to Dana-Farber.
Amongst Professor Bill’s other principle research interests were yeasts – in fact Bill characterized himself as a yeast geneticist. In this area,Bill spent a lot of time experimenting with sugar/glucose and its impact on cancer. He was one of the first scientists along with Valter Lungo to postulate the importance of fasting and the keto diet for cancer management. Unlike Lungo, Bill was not a self-promoter .. and for that we loved him.
It saddens us greatly that the published obituary fails to mention one word about prostate cancer. Awareness and teaching were amongst Bill’s highest priorities; in fact Bill delighted in telling his AnCan Advanced PCa Virtual Group about his hospice experience this past August and planned to repeat the presentation to a live audience at Roswell Park before becoming too sick.
Should you wish to make a donation in Professor Bill Burhan’s memory, you can do so here. A memorial service and mass will be held in Buffalo on Nov 16, 2019 – for further information, please e-mail me at info@ancan.org.
With heavy heart, I write this sad post to report my dear friend, Professor Bill Burhans,