I hope you are all relaxing on this Memorial Day and enjoying the holiday. AnCan thanks those who served their country, and offers much comfort to those who lost loved ones in that endeavor.
Like many of you reading this, I remember both my parents who served during World War 2; my father had a somewhat colorful military career, staying through 1946 and participating in the 8th Army Sicily Invasion and then moving all the way north through Italy. My mother was a WAAF – part of the RAF; she loaded and developed the pix in the aircraft cameras. I stopped by the cemetery Saturday to say hello to my Dad who is buried here in Tucson and thought of adding a Union Jack to all the Stars & Stripes fluttering in the grounds.
I am often asked what is new and promising in PCa research. It is a huge task to stay current on all going on, especially since some of the research is so early and speculative. It is hard to distinguish what may have legs and evolve into the Silver Bullet from what evaporates in the Petri dish. One piece of UCSF research was brought into focus by one of our AnCan participants this week – a drug named ISRIB that may make prostate cancer cells self-destruct. While this is still very early days, it is a fine example of scientific creative thinking.
Two of AnCan’s finest volunteers got to meet each other Friday night in Laurel, MD at the home of Jake Hannam. Rich Jackson and his wife Brenda were ‘Harleying’ it up to DC from Norfolk, VA for what may well be the last Rolling Thunder national gathering; they took a slight detour to pay a social visit to Jake and Paula Hannam. This is certainly a first for Jake to meet another AnCan’r in person; Rich may have run in to one or two at the PCI event in Virginia Beach last year.
Jake runs our FaceBook page and co-moderates the high risk/recurrent/advanced prostate cancer virtual group. Rich handles our data base on Mail Chimp, and moderates the men’s Speaking Freely virtual group. Heartfelt thanks to both of you for all you do.
With thanks to my buddy, John Novack, Director of P.R. & Communications at Inspire, I read this article last week in the Philadelphia Inquirer. ‘Fighting Disease is the Wrong Metaphor’… written by a doctor, it represents one side of the controversial argument about the language of cancer.
My personal opinion ….. since I doubt not everyone in AnCan agrees with me, is that choice of language is completely personal for each cancer patient. By making their preference known, that person rightly expects their medical team, friends and acquaintances to respect it. Nor should should they be offended by others who choose differently. Whatever helps each of us get through our own situation is right for us.
AnCan will hold a webinar on TheLanguage of Cancer on Monday, July, 29, 2019 … all are welcome.
Airbnb and the Cancer Support Community announced a major partnership to help cancer patients get free housing while traveling for treatment. For more details, including income criteria, please follow this link: https://www.cancersupportcommunity.org/airbnb
On hearing of this wonderful program, many generous folks asked if there was a way they could help cancer patients in need. In response, Airbnb is proud to invite you to make a difference and join the Airbnb Open Homes program. We hope you’ll join this special group of hosts who offer medical travelers a short-term home. Open Homes hosts make a major impact on people’s lives. For more information on Open Homes, follow this link: https://www.airbnb.com/openhomes
CancerCare webinars usually feature leading experts on the topic; click on the titles below to register for any of these sessions – all are free. You can also hear recordings by going to their website – www.cancercare.org.
…. then read this excellent short piece from CureToday (5/18/19) by AnCan’s friend, Sarah DeBord who has struggled to identify a trial for herself despite being an outstanding patient advocate.
There are many lessons to be learned here …. read it and you’ll find out!
Advanced disease treatment options; why does your doc not keep you informed?; creating a medical team – remote + local med oncs; NP appointments; Intermittent Hormone Therapy – don’t worry when T. rises!; neuropathy; Axumin appointment; bogus alternative cancer cures; pembrolizumab + SD101 trial; debulking primary with advanced PCa; shortness of breath and weight gain; prednisone side effects
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.
