Topics Discussed:
Prednisone with Zytiga; fighting mental acuity on Zytiga – Ritalin, exercise; Zytiga and dreams; experience on darolutamide Nubeqa; NIH scan protocol; when to get your tumor sequenced; a caregiver’s experience; what your caregiver needs … intimate relations; getting olaparib prescribed; surgery follow-up with high Gleason; CBD for hot flashes; intermittent hormone therapy
Topics discussed:
Intermittent hormone therapy with 2nd line anti-androgens; getting approved for darolutamide (Nubequa) may depend on your screening method; HT, cognition, dementia and more; stretching out Xgeva; scanning at very low PSA levels; darolutamide has positive cognition side effects; focal cryotherapy for metastatic lesions; is oligometastatic radiation, curative, management or palliative?; the meaning of Median Progression Free Survival; FDA Approvals ….. expedited, breakthrough etc – can patient advocacy help?; Ethics of prescribing hormone therapy
And here’s a great article we saw this morning on hormone therapy and cognition by our friend, Dr. Chuck Ryan!
Over the week-end I received an e-mail from Mike Crosby, Founder of Veterans Prostate Cancer Awareness inviting Peter Kafka, our Board Chair, and myself to attend a meeting in DC with the VA. The invitation noted a significant increase in de novo metastatic diagnosis amongst Veterans based on a recent PCF/VHA study.
Well HELLO…….. AnCan wants to note that 1) this is not just amongst Vets alone, and 2) we are we hardly surprised based on the ‘criminal’ 2012 USPSTF PSA Advisory that condemned tens of thousands of men to death?!
Some of us spoke up loudly at the time – we did not need to be Carnac the Magnificent to see the implications of this shortsighted, idiotic recommendation not to test for PSA. Of course more men would only be diagnosed once symptomatic … and then too late. PSA testing is about information not treatment – the UPSTF failed to make that distinction.With not even a single urologist or genitourinary medical oncologist on their panel, this bordered on USPSTF negligence; we said so at the time. And where was the VA voice then – they could have brought their weight to bear on the USPSTF but I don’t recall them doing so … correct me if I am wrong.
ZERO is also part of this current initiative. They are referred to as the most influential patient advocacy organization in the USA – maybe on The Hill but beyond that is questionable. Whenever we have tried to work with ZERO collaboratively, they have always shunned us … and others. So we now issue an invitation to ZERO as well as all the other prostate cancer organizations to work TOGETHER to raise awareness of our insidious disease; not just for Vets but for all US men, especially those at greater risk for de novo metastatic diagnosis.
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.
The full text of this 2019 European Urology article can be accessed here: http://tiny.cc/ZytigaVsXtandi
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
Source: WebMD, https://www.webmd.com/a-to-z-guides/testosterone-test#2
According to LabCorp, “normal” levels of testosterone for healthy, non-obese males (BMI <30) between the ages of 19 to 39 are:
264 – 916 ng/dL
Source: Travison, et.al. JCEM 2017,102;1161-1173. PMID: 28324103.
MSKCC recently published a timely article on testosterone recovery:
Source: https://www.mskcc.org/clinical-updates/testosterone-recovery-uncertain-after-androgen-deprivation-therapy-prostate?utm_source=OncoNotes-10-15-19&utm_medium=email&utm_campaign=ProstateCancer&utm_type=ClinicalResearch
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
On the topic of ‘curing’ metastatic prostate cancer above, two worthwhile articles appeared in my inbox today …. RB or Not RB – That is the Question from our good friend Dr. Charles Ryan. And “What Works for Breast Cancer Should Work for Prostate Cancer, Right?” by Dr. Evan Yu. Be assured there is ample excellent ongoing research aimed at allowing us to justifiably use the ‘C’ word!