Sometime during the last week or so, I received an e-mail blast from Prostate Cancer Foundation – these usually sit in my inbox until I have a little extra time, or need something less intense to occupy my mind. When I opened it, I read a story that rang a couple of bells. The featured patient, Stephen Eisenmann, has metastatic prostate cancer …. sadly that’s not unusual for many of your reading this note. What distinguished Steve is that, like around 5% of PCa patients, he does not make PSA!
This is an issue that has been on my radar for many years ….. since around 2008 when I first came across this phenomenon through supporting a friend who had recently had an RP and showed minimal post-surgical readings that barely changed but trended upwards – I continue to dialog with this gent 11 years later. Most of you depend on the inadequate PSA marker to monitor your disease ….. so think of the difficulties when that is ineffective; when your PSA creeps, no inches up from, non-measurable to 0.130 over 11 years. For much of that time there are no advanced scanning techniques … that you don’t qualify for anyway even if you did have a tumor mass that produced no PSA.
Then there’s another issue as to whether you even want to get an ultra sensitive PSA – some of you may remember Dr. Moyad addressed this in an UsTOO newsletter back in 2017- check his column on Page 3 ….. he wrote about Jack and was speaking about our same friend!
And finally, the doctor to whom Jonathan Simons referred Eisenmann is very well known to AnCan …. and one of our favorite GU med oncs, Dana Rathkopf at MSKCC. It’s good to see that there are now a few trials for men in the ultra-low PSA category, and we are in the process of connecting Jack with Dr. R. Ironically for AnCan, CDK12 now appears to be actionable – it was not back in 2015 when our dear friend Dominic Marrese, GRHS, ws found to harbor this mutation.
ADT & Cardiovascular issues; monotherapy apalutamide (Erleada); Intermittent Hormone Therapy – when to resume; bad reaction to opioids; Lu177 PSMA trials in Canada; HDR via injection; recurrent disease follow-up; is 15 years reasonable expectation for advanced PCa?
Two pieces of research crossed my desk in the past couple of weeks regarding advanced PCa scanning. The first is a short, easy to read review of two studies by our friend Dr. Fabio Almeida in Phoenix, Az that summarizes what we often discuss in our virtual groups ….. that the Gallium 68 PSMA scan is roughly speaking twice as effective as the Axumin scan; and that both are much more effective at higher PSA’s. The likelihood of detecting cancer at a recurrent PSA of 1.00 is about double the rate at less than 0.5. Many thanks to the Silicon Valley UsTOO Advanced PCa group for circulating this and to Peter Kafka for forwarding to me.
The second piece of information to highlight comes from a recent PCI post regarding the even better scanning technique 18F-DCFPyl currently being trialed by NIH in Bethesda, MD and elsewhere. Preliminary results of the CONDOR trial suggest that 48 of 55 men in total changed their disease management plans as a result of the scanning result. This is a small sample, and there are an additional 145 men admitted to this trial whose results have not yet been included.
Through our friend Professor Richard Wassersug, a New Zealand researcher has reached out to us to recruit respondents for an online survey re. managing sexual life post PCa diagnosis. Here is the self explanatory e-mil and link ….. and if you can figure out what to do with a Kiwi Dollar gift card, it might possibly pay you!!
I am currently running an online survey to study the barriers and enablers for prostate cancer patients in using various strategies to manage sexual problems.
Below is further details about the study:
Background: Sexual dysfunction is common among men after receiving prostate cancer treatment. Many couples stop sexual activity when the patients have sexual dysfunction, but some remain sexually active.
Aim: Our team plans to assess what strategies prostate cancer patients use to maintain sexual activity.
Eligibility: The study is open to all prostate cancer patients following treatment.
Procedure: The survey takes about 15 minutes to complete and only needs to be completed once. At the end of the survey, participants can enter a raffle for a chance to win a $100 NZD gift card.
Potential Outcomes: Data from this study can potentially be used by health care providers to advice prostate cancer patients on how to remain sexually active.
The Memorial Sloan Kettering kitchen suggests three healthy, very easy to prepare recipes with a Southwestern twist – watch here and look them up here:
Oven-prepared chicken fajitas
Black bean, quinoa salad
Egg cups
And for a bonus, responses to questions regarding nausea, neutralizing that metallic taste and more – enjoy!!
Very unusual 3+3 diagnosis recurs; treatment damage to bladder/urethra; Color.com provides results update; success with a PARP-I; is Lu177 available with no prior chemo; early immunotherapy intervention for advanced disease.
One piece of research that struck home to me appeared in Prostate Cancer International a couple of weeks back. Simply titled ‘Depression in Men on ADT’ , it reports a VA study confirming the observed link between depression and ADT. While the study may pose more questions than it answers, I personally endorse Mike Scott’s advice that … “there should be no shame associated with depression after a diagnosis of prostate cancer (regardless of how you may get treated or managed).” In many cases this is a physiological response to the change in brain chemistry caused by the ADT treatment. In my own case, I felt very fortunate that my experience allowed me to recognize the symptoms of depression and adjust my medication accordingly.
Over 500,000 people were impacted by the 9-11 disaster. Many diagnosed with cancer in later years, especially if they n longer live in theTri-State area, are unaware they can access help with their medical costs and receive compensation.
This webinar explains what is available and provides navigation on how to apply. Click hereto watch.
Please note AnCan has no financial interest in promoting this message nor does it receive any financial benefit.
