Last month’s Under 60 Stage 3 & 4 Prostate Cancer meeting was small, intimate and produced a true gem from Down Under to benefit all AnCan’rs …
For the life of me, I forget what raised the topic … maybe a Death with Dignity discussion – but Aussie AnCan’r, Steve Cavill told us about the ICE “In Case of Emergency” Checklist Document that he and his wife Leonie, who occasionally attends our Care Partners Group, have both completed. Steve and Leonie reside in the suburbs of Melbourne and are currently heading towards mid-Winter.
This ICE Checklist takes much, if not all, the difficulty out of placing your key information in one place. Like your vital passwords to your laptop, phone or bank accounts; names of key individuals in your life and more. You know .. all that information making it possible for someone to piece your life together if you’re suddenly no longer with us.
Frankly it’s information we should all compile no matter how old. With this checklist guide at hand to march us through it, there can be few excuses. Just remember, this version of the ICE checklist was created in Oz, so it may not be fully applicable Stateside. If one of our US volunteers has time to ‘Americanize’ it, I feel sure it will be greatly appreciated – we have very few solicitors in the US and a few too many attorneys!
Here’s the checklist document in Word format ICE Document Template Now do your part …. and a BIG THANK YOU, Steve Cavill!!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 11, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick:Cutting-edge diagnostics guide his treatment…but didn’t stop a new tumor. (BN)
Topics Discussed
Talked into HIFU with Gleason 8; finally back to full dose of meds after financial aid; awaiting CT scans for PSA rise 18 months post-chemo; proteomics and RNA sequencing on his new non-PSMA-avid tumor; looking for GU medical oncologist in Seattle area; testosterone is back, PSA and erectile function are undetectable — “2 out of 3 ain’t bad”; red clover, red clover, send the right brand over for hot flashes — or give acupuncture a try; upturn for Professor Herb, but still pushing to connect him with appropriate care; after 40th hyperbaric treatment, cystitis is under control; MSK wants a fly-by as he prepares for SBRT; settling on a dosage tweak for darolutamide; eyeing the future after 4th cycle on BAT
Chat Log
Unknown · 6:14 PM It’s a prostate cancer patient with a family history of prostate cancer who has been treating / managing his cancer with intermittent hormone therapy for 18 years. Diagnosed at age 55. Now, obviously, 73. Says he feels as good today as he did then. Why I am more apt at this time to continue this same course and out off radiation therapy.
Unknown · 6:15 PM *put off*
Unknown · 6:16 PM What is a high flue treatment?
AnCan- rick · 6:17 PM HIFU …. high frequency ultrasound
Unknown · 6:18 PM What prompted the psma?
AnCan- rick · 6:19 PM Rising PSA
John A · 6:25 PM Dr Sheade looks like a medical heme/onc. I don’t see any GU specialty
Julian – Houston · 6:36 PM Need to leave and maybe back later.
Alan Babcock · 6:49 PM What are the possible negative consequences of the treatment you are recommending? What are
the different treatments you considered?
Richard Tolbert · 6:54 PM Patient Access Network Foundation:
Richard Tolbert · 6:55 PM Email: www.panfoundation.org
George Rovder, Arlington VA · 7:06 PM Thank you all for your caring support. See you next time. George
AnCan- rick · 7:10 PM Michael Schweitzer, Evan Yu , Heather Chang
Pat Martin · 7:10 PM Fred Hutch is very active in trials, also.
Len Sierra · 7:41 PM From Mt. Sinai, NYC: Several studies of a proprietary extract of red clover isoflavones
suggest that it may significantly reduce hot flashes in menopausal women. However, the largest study showed no effect.
Jack · 7:49 PM By reputation Himesha Beltran MD at Dana Farber, formerly in NYC is the neuroendocrine guru. I am
sure Rick already knows this but I have heard about her for quite a while. How to hook Herb’s treatment time up with her may be a challenge.
AnCan- rick · 7:54 PM Jack – the two docs on our list are Beltran and Aggarwal, We have direct connnections – but
we will not make them unless a responsible NEC onc is in charge.
Unknown · 7:58 PM NIH definition of Palliative care … https://www.nia.nih.gov/health/
what-are-palliative-care-and-hospice-care#palliative
AnCan- rick · 8:01 PM From the link above ….. What is palliative care? Palliative care is specialized medical
care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.
AnCan VIRTUALLY speaks to Extended Access Programs!
When AnCan Advisory Board Member, Jeff Waldron asked us to participate in a pharmaceutical industry Conference on Expanded Access Programs (EAP) in Boston at the end of March, we were only to happy to amplify the patient voice.
A couple of background factors. For those of you not aware, EAP is the name given to programs that allow needy patients access to groundbreaking drugs that have not yet received regulatory approval – in the US case, by the FDA. All of our guys who received Pluvicto (Lu177 PSMA 617) through ‘Managed Access’ last year were actually enrolled in a form of EAP. As you may recall, when the FDA approved Pluvicto, the Managed Access Program ceased to exist and patients were rapidly transferred to commercial providers.
Our good friend, Jeff Waldron, has a back ground working with both Payers and Pharma. He is one of our most well-connected Advisors, and for the past 3 years, has organized an international EAP Conference. All but the smallest pharmas have an EAP. The past two years conferences were virtual, but this year it was held live in Boston from March 21-23.
Rick Davis attended virtually on behalf of AnCan to participate in a panel moderated by Jeff entitled,“Closing the Gap of How We Reach Patients”. Ours was the sole direct patient particpation in the 2-day proceedings, and one thing was for sure – they couldn’t miss ‘rd’ as you’ll see from the photgraph alongside. Live feedback was very positive, especially from hearing the difficulties patients encounter. Perhaps the single exception.was a senior drug executive from a pharma with whom AnCan works closely. She presented for 25 minutes immediately before the Panel, finally mentioning patients in her closing sentence. When Rick pointed that out, she was none too pleased.
So what did we say. The take- away points for pharma were:
Publcize your EAP in a way that is understandable and accessible to and for patients
Provide support to the patients’ medical team filling out the paperwork to help eliminate that as a hurdle to access
Respond quickly so patients are not hanging out waiting to hear if they can access the EAP drug
Be sure trialled drugs are available to patients benefitting from their use, if the trial is stopped and the drug has not been approved.
AnCan’rs – just another example of how we ensure your voice is being heard … we have your back!
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 14, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Fateful turns: Belated PSA test, inappropriate focal ablation, diagnosing cancer as BPH. (bn)
Topics discussed
Bad news after 6-year pause in PSA testing; focal ablation to avoid side effects ends in regret; huge prostate but doctor keeps treating BPH; sudden passing of Dennis McGuire from brain aneurysm; taken “right to the edge” with painful BAT side effects; simultaneously treating two kinds of prostate cancer; complications (lung puncture?) after port insertion; are wild hormones signaling a neuroendocrine tumor?; how many PSMA PETs will insurance pay for?; trouble with statins and darolutamide; veteran of intermittent therapy starting ADT again; newcomer can’t find a niche in AnCan’s prostate groups.
Chat log
AnCan Barniskis Room · 6:13 PM Also Telix … who make Ga68 PSMA 11 Illucix
Active Surveillance Prostate Cancer Virtual Support Group
Active Surveillance (AS) for low-risk prostate cancer presents its own challenges that are very different from other treatment protocols. This virtual group is for men and caregivers on or considering AS to treat their condition. New participants are given priority to discuss their situation.
Rick Davis attended virtually on behalf of AnCan to participate in a panel moderated by Jeff entitled,“Closing the Gap of How We Reach Patients”. Ours was the sole direct patient particpation in the 2-day proceedings, and one thing was for sure – they couldn’t miss ‘rd’ as you’ll see from the photgraph alongside. Live feedback was very positive, especially from hearing the difficulties patients encounter. Perhaps the single exception.was a senior drug executive from a pharma with whom AnCan works closely. She presented for 25 minutes immediately before the Panel, finally mentioning patients in her closing sentence. When Rick pointed that out, she was none too pleased.