June is Men’s Health Month, in case you didn’t know! Our friend Justin Birckbichler, men’s health and testicular cancer patient advocate, and owner of the website A Ballsy Sense of Humor, just penned an article for The Good Men Project as part of a series on ‘Why Men Don’t Talk About Their Health’.
He answers the frequently asked question, “Why is there no Susan G. Komen equivalent for men’s health?” by naming several organizations … including AnCan for prostate cancer – even though we now do much more. And Justin – as you well know, we want to start a virtual testicular cancer group!
Read the article for yourself here …… thanks Justin!
Many of you seek “The Magic Bullet”; you are in pursuit of the “Holy Grail” that brings ‘cure’. While you hear us say there is no cure to advanced prostate cancer, medical innovations come along from time-to-time that do alter clinical practice and do change disease management. They can give legs to progression free survival and even overall survival! I think of drugs like the second line anti-androgen abiraterone acetate (Zytiga) with its totally innovative means of action that changed clinical practice. Back in 2008 when I first heard of this drug that stopped the cancer cells from making their own food (testosterone), I thought it was science fiction – who knew the cancer even made its own T. And currently the radionuclide protocol Lutetium 177 PSMA acts more like a guided missile than a medical treatment.
So when the FDA fast tracked a new PCa drug last week that was barely in Phase 1 clinical trial development, it caught the attention of both Len and myself. This drug, ARV-110 made by Arvinas, addresses androgen receptors in a totally innovative way – it out and out destroys them. You can read more on the biotech’s site or in this Onc Live article. The question I am most frequently asked is what is new and innovative in the field ……. while I am not saying this is the ‘Magic Bullet’, it could be a game changer! Btw, you can hear Len explain ARV-110 on last Tuesday’s virtual group recording.
Catching up with a good buddy yesterday, he mentioned he had recently published an article! Now in my biz, most of you would not find that at all unusual, not even in a peer reviewed journal, since you know I often speak with clinical researchers!
But what if I reveal this friend is not a doctor, nor a researcher, a scientist or even a patient; he’s a journalist, albeit a health one, and the research paper is in BMC Medicine … ‘BMC’ stands for BioMedical Central. And the paper looks at whether patients and caregivers are influenced by ‘spin’ when medical research is reported.
Needless to say, the answer is very much so. This randomized trial of 900 patients and caregivers sourced from the Inspire forums was split into 3 groups each considering a different story. Half of each group were given a published ‘spun’ story, and the other half were given the ‘denuded’ rewrite. Both groups were asked the same question – would the reported treatment be beneficial to patients? The ‘spun’ versions were considered 30%more valuable for early research trials; and for later stage research the spun stories were thought to be 47% more helpful..
You have heard me say all too often, don’t believe all you read …. process this information with a grain of salt, and consider the source. Now that advice is no longer anecdotal!!
In a single institution study at the University of Florida, Gainesville, investigators found that in mCRPC patients, all of whom were pretreated with chemotherapy, there was a 45% rate of pancytopenia which is a clinically significant reduction in the number of white blood cells, red blood cells and platelets. In the clinical trial that led to the approval of Xofigo, the pancytopenia rate was reported as only 2%. Why is this important? Because pancytopenia can disqualify patients from other survival-prolonging therapies they may need after Xofigo. Older age (74 vs 68) and higher ECOG score (1.6 vs 1.2) correlated with increased risk of pancytopenia.
To view the full ASCO abstract, please click here.
One topic many of us avoid concerns end-of-life decisions. How many reading this have health directives in place, a legal and effective will, a pink directive stuck to your refrigerator door in the event EMT’s come to your home etc etc ….. I am certainly guilty as charged!
Compassion & Choices recently circulated My End-of-Life Decisions Toolkit Guidebookthat you can also download as a pdf ….. or contact Compassion & Choices for a hard copy if you want to send to family or friends. AnCan appreciates many may not endorse Compassion & Choices’ agenda; nonetheless we recommend this guidebook as an excellent starting point to map out many of the difficult and controversial issues terminal disease raises.
Some of its features not often seen are:
Values Worksheet (Pg 19)
Detailed Specific Therapies Election (Pg 21)
Dementia Provision (Pg 25)
Sectarian Healthcare Directive (Pg 27)
Hospital Visitation Authorization (Pg 31)
There are several other good addendum making it worthwhile to review this Guide carefully.
This last bullet point is particularly poignant for those who attend the AnCan Caregivers Virtual Group. One of our regular participants has been troubled by legal barriers restricting visits to a lifelong friend with no family. It is heartbreaking to hear the best intentions and a giving heart foiled by misapplication of privacy protection rules.
Our thanks to Susan Lahaie, one of our Caregiver Moderators, for bringing this to our attention. We also recommend you watch her late husband’s, Ron Silverio, video.
ASCO19 summary; Protac – ARV-110; PARP-I’s for PCa & TOPARP-b trial results; Axumin vs other scans … and when to scan; Intermittent Hormone Therapy experience; primary vs distant tumor composition; how often should advanced disease men get their PSA tested; anti-angiogenic drugs for PCa; possible new source for biopsy 2nd opinions
Note: For more information on ASCO19, please search this blog.
For any follow-up questions or additional links, e-mail info@ancan.org
An old friend, one of the few who I have not come to know through prostate cancer, recently introduced me to a couple of men who are doing some very interesting work in the realm of social ventures. Between them, they have established several efforts including Wacuri, Generocity, and a mind-body healing program that I ‘sampled’ personally last Friday through a virtual meeting. While we are not yet sure how this initial meeting will develop, I feel certain that you will be hearing more about our joint efforts.
AnCan is a firm believer in the role of complementary medicine …… we often speak about the role of exercise, diet and stress relief in our virtual groups. For those unfamiliar with the term, complementary medicine is used alongside Western medicine with the intention of enhancing treatment. It is not meant to be used instead of Western medicine, and may often include protocols employed frequently in Eastern medicine like acupuncture or reiki. AnCan always recommends that you consult your medical team if you decide to employ a complementary practice.
So, last Monday I went to the lab for my monthly blood test. The results came back confirming what I was already feeling. My long lost twin, Mr. T (Testosterone) had come back. I had not seen “him” in a year or so and it was good to know he was back in action.
I have been on “intermittent” ADT for some 5 years now and this is my third experience recovering some degree of testosterone from the suppressed level of essentially “none”. Each time it has taken some 4 months or so to recover after getting off my drug regimen. It is somewhat of a yo-yo experience in some respects, but I like to think of it today more as the return of the “Prodigal Son”. A time for celebration.
I know that I am fortunate in my disease progression to be able to go on and off androgen deprivation drugs. Many with advanced disease do not have this option. Some might say that I am “playing with fire” or taking a big risk. That might be so, but each of us must take ownership and responsibility for the management of our own journey with prostate cancer, usually working closely with a knowledgeable professional who hopefully “has our back”.
For me this professional happens to be my GU (genitourinary) medical oncologist who closely monitors my “numbers” For some of you it might be your local urologist or GP. And I know for some with low and intermediate grade disease they choose to work with a naturopath or other alternative practitioners. But the bottom line is that there should be someone in a trustworthy position to bounce strategy and concerns off of so that the entire weight of managing our prostate cancer is not solely on our shoulders.
Once again this brings me to the value of our gatherings. Hearing directly from our peers about their first hand experiences is a tremendous reinforcement. We are all no doubt brave sojourners but we are often taking paths that other men have walked before us. Sharing experience is invaluable.
In this post hoc analysis of the SPARTAN trial, there was no significant difference in age-related efficacy rates for apalutamide among patients subdivided into the following three age groups: <65, 65 to <75, and 75 or older. There was, however, significantly more Grade 3/4 toxicity among patients in the oldest subgroup (75+). What I found to be of greater interest, however, was this comment from the author regarding the comparison between enzalutamide and apalutamide: “Apalutamide has been compared with enzalutamide and no significant differences have been observed, although apalutamide has fewer reports of hypertension compared with enzalutamide.”
