AnCan is a huge proponent of inclkuding palliative care in your treatment plan and medical team!!
Palliative care is NOT about hospice or end-of-life ….. that is just a sub-set of palliative medicine. At AnCan we prefer to call it Symptom Management, the lingo used by UCSF. That is no coincidence as AnCan has an excellent longstanding relationship with the UCSF service. Dr. B.J. Miller is on our Advisory Board, and Dr.Mike Rabow, the Director of Symptom Management Service at UCSF, is a friend of the family too.
Last Friday, Dr. Rabow gave an excellent webinar on CureTalks titled Redefining Palliative Care – you can listen here. For those living with advanced cancer, auditing this webinar is a MUST in our view!
Some of you may already be aware of Janssen/J&J’s annual patient advocate conference, HealtheVoices, that is usually by invitation only based on a competitive application process. This year’s pandemic has sent the Conference virtual, and it is open to ALL! The conference covers the spectrum of conditions from mental to physical, and from cancer to rare diseases.
#HealtheVoicesLIVE 2020 is this Saturday, April 25 starting from 11 am – 8.30 pmEastern. You can find the full agenda and link to join HERE. Feel free to pop in and out during the day and tune in to presentations and events of interest to each of you.There are presentations, interviews and even small group breakouts allowing you to interact with leading national advocates for differing conditions.
Please note the links to join change for the morning and afternoon sessions:
To join the broadcast between 11 a.m. and 3:30 p.m. ET,click this link.
To join the broadcast between 3:30 p.m. and 8:30 p.m. ET,click this link.
For the best experience, join the meeting via Google Chrome
I will be presenting in the 3rd Hour; the session starts at 1.30 pm Eastern and I am due up first as part of 4 flash sessions followed by a Q&A. I will be offering tips on virtual moderation – a skill many patient advocates have had to quickly familiarize themselves with in the past few weeks. But as you all know, we’ve been at this game for many years!!
Please join me and HeV, enjoy the conference, learn a little, and above all – stay safe, well and have fun!
PLEASE NOTE – for reasons best known to GtM, we only have audio this week. Nor does there appear to have been any use of the Chat Window.
Editor’s Pick: LHRH drugs and mental anguish – a topic near and dear to my heart. I consider myself fortunate to have known ‘The Black Dog’, as Churchill called depression, before I went on Lupron. That was a blessing for me in that it was much esier for me to handle and absorb. My heart goes out to men who suffer depression &/or anxiety with no prior experience. (rd)
Topics Discussed:
condolences to Jim Ward; who’s at risk from COVID-19?; low PSA, soft -tissue PCa endures for 20 years; multiple treatments at one hospital visit; LHRH drugs cause anxiety and depression; medical marijuana; radiating the prostate in advanced disease; with recurrence, at what PSA level should you scan?; frequency and type of scans to monitor advanced disease
For our prostate cancer followers, patients & caregivers, PCRI announced yesterday that its mid-year one-day conference on Saturday, March 28 will now be held as a virtual gathering with a live FREE stream …. all you need do is register here.
The conference features as always the dynamic variety duo, Drs. Mark Moyad and Mark Scholz. They will be joined by 3 excellent speakers:
GU Medical Oncologists, Dr. Evan YU from Seatle Cancer Alliance/ University of Washington Med School
Radiation Oncologist, Dr. Jeffrey Demanes from UCLA
Genomic specialist, Dr. Joannne Wiedhaas, UCLA
Each speaker will be followed by Q&A fielding your written questions that can be submitted ahead of time. And it will conclude with 90′ of Q&A with Moyad & Scholtz.
This is a terrific opportunity for you to ask the experts all those questions your own medical team has not answered completely and/or we are not fielding in one of our NINE, yes 9!, monthly VIRTUAL PC support groups. AND this crew will respond to personal situations and provide somewhat filtered medical advice that we cannot do.
That should cover it all, but just in case not, here again is the PCRI Conference website:
I am copying a post recently received from New PCI publcizing a short ASCO survey on how you embrace exercise and diet. As many know, AnCan strongly endorses exercise as part of any cancer management program; and sensible diet may also be significant and rarely hurts. I have taken the survey and encourage anyone previously diagnosed with any type of cancer to do so. (rd)
The American Society of Clinical Oncology (ASCO) has put together a brief research survey to learn more about patients’ experiences with cancer care. Specifically, ASCO is interested in patient’s perspectives on how things like diet, exercise, and weight management are incorporated into cancer care.
The survey should take most people no more than 10 minutes maximum to complete. All questions are optional, and ASCO has stated clearly that no personally identifiable information will be collected.
If you are an individual with a personal history of prostate cancer (or cancer of any other type), please click here to take this patient survey. Thanks for your help to ASCO in seeking to improve cancer care.
If you know others who are > 18 years of age and who have been diagnosed with any form of cancer, ASCO would also appreciate it if you passed information about this survey on to those people too. ASCO is seeking the widest possible range of responses to this survey from the cancer patient community.
Editor’s Pick: Should a man with aggressive disease (Gleason 4+5) trade off allopathic medicine for QoL?
Still no GtM transcripts ….. and we had a lot of technical difficulties with audio this week – apologies!
Gleason 8/9 diagnosis – what next?; QoL vs allopathic treatment for another G9 man who deferred action; monitoring post-18F DCF Pyl scans; Intermittent HT working; frequency of scanning with metastatic disease; experiencing docetaxel + carboplatin; chemotherapy + darolutamide; leg cramps on startin abiraterone + prednisone
