Dr. Michael Morris is a world-renowned medical oncologist and section head of Memorial Sloan Kettering’s GU Oncology department. In this hour long webinar, sponsored by the National Alliance of State Prostate Cancer Coalitions, Dr. Morris clearly explains the great advance in scanning technology that PSMA PET imaging represents. He compares it to other scanning technologies in a way that will finally make sense to you. He states that he expects PSMA agents to be approved by the FDA for the detection of prostate cancer recurrences before the end of this year.
When you click on the link, you may be required to register yourself in order to view the webinar. This simply requires you to enter your name and email address. Enjoy and be informed!
Alexa Jett has recently connected with AnCan – initially to co-moderate the planned thyroid cancer virtual group we hope to start by year-end. But subsequently her infectious, warm and enthusiastic pesonality opened volunteer opportunities with us. Alexa recently directed The TALK – MS webinar, and she has introduced the Renal Meduallry Carcinoma (RMC) group to us wthat will have its first meeting this ocming week. Now we are working on Adolescent & Young Adult (AYA) opportuities.
Alexa survived recurrent papillary thyroid cancer, most recently in 2019. First diagnosed in 2017, aged 25, Alexa was treated at M.D. Anderson. Whilst there, she refequented Kim’s Place – the AYA retreat where she met one of our RMC moderators, caregiver Charissa Monroe, who lost her husband to RMC.
ESPN published an article this week on how Kim’s Place came to be, and Alexa was interviewed extensively, It was just published on The Undefeated blog and you can read it here:
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!
Recently AnCan in partnership with UsToo initiated a webinar series titled; The Talk. The series focused upon the significance of conversations with family, particularly our children regarding the implications of a diagnosis and treatment for cancer. My younger son Jeffrey and I participated in the panel of the first webinar speaking about the reality of genetic driven prostate cancer and the possibility of passing it on to my children.
Last night I was thinking about another “TALK” which was a big part of my experience this year and one which is often difficult to have. In early May of this year my one sibling, my sister passed away at the age of 78-1/2 years. She was kind of a renegade and a rather unique woman. Her first love and passion was riding motorcycles. When she died, she left 3 bikes in her garage including her 1981 RS -1100 BMW. She began her motorcycle experience way back in the 1950’s as a beatnik in Greenwich Village. Later she made numerous trips to ride in Asia, Europe and all over N. America attending many BMW rallies.
I mention this because as her health declined in her later years, she was quite clear with me about not wanting to prolong her life when she could no longer ride her bikes. She and I had numerous “talks” about end of life issues. She always thought she would “go out” in a fiery crash, but alas it was not to be. She broke her hip and because of many other leg problems it was doubtful that she would be able to walk again. After hip surgery she was moved into a nursing home where she lasted about one week.
Her last couple of weeks she was pretty foggy and incoherent but she and I were able to connect via Face Time a day or two before the end. She knew me, and expressed her wish to get out of the facility and go home. I told her that until she could master a walker she could not do so. She knew that was not to be and I asked her if she was going to go to “Plan B”? She said; “Yes, it would be Plan B”. A day or two later she refused her food and meds and removed her oxygen and facilitated the end of her journey. She knew she lived a remarkable life and lasted beyond her expectations and was ready to depart.
I am very thankful that we made the space to have, The Talk so that we both were prepared for the unexpected. It made the transition so much easier. I guess I bring this up because it is kind of the elephant in the room for all of us and so many ignore this reality and put off The Talk. Most likely very few if any of you who participate in our Low and Intermediate Prostate Cancer Virtual meetings will pass on as a result of this disease, but still the fear tends to lurk in the mind.
Editor’s Pick ….. From Down Under, we hear from a Gent diagnosed metastatic at aged 50 who has managed his disease successfully since 2012! AnCan LOVES these anecdotal stories that offer hope (rd)
Topics Discussed
Cancer returns, but is it prostate cancer or lymphoma?; ‘young man’s’ successful treatment of metastatic cancer over 8 years; TMJ and bone support medicines; another man finds he’s BRCA+ & anemic; East Coast PSMA scans; chemo leads to foot & hand rash – or maybe allergy at the infusion site; enz, abi or chemo – which first?; acupuncture solves neuropathy; NIH still shut down for PSMA scans; seeking empirical validation for treating the primary tumor; needle biopsy of inguinal lymph node
Chat Log
AnCan Barniskis Room (to Len Sierra): 5:10 PM: is Jim still on HT??
AnCan Barniskis Room (to Len Sierra): 5:14 PM: They dont need tissue – liquid Bx
Peter Kafka (to Everyone): 5:15 PM: Who is treating Jim
David Muslin (to Everyone): 5:18 PM: Dr. Marc J Chernoff, DO is a doctor primarily located in Meadowbrook, PA, with other offices in Meadowbrook, PA and Willow Grove, PA( and 4 other locations). He has 29 years of experience. His specialties include Internal Medicine, Hematology/Oncology, Medical Oncology.
AnCan Barniskis Room (to Len Sierra): 5:21 PM: Geynisman @ Fox Chase
John I. (to Everyone): 5:22 PM: https://www.foxchase.org/daniel-geynisman
Len Sierra (Private): 5:41 PM: For lymphoma?
Len Sierra (Private): 5:46 PM: that was in response to your suggestion that he should have a liquid biopsy.
Len Sierra (to Everyone): 5:52 PM: Jim Jeffries, Read Mark Scholz book on prostate cancer: “The Key to Prostate Cancer.” Maybe others can suggest other recent good books.
Peter Kafka (to Everyone): 5:54 PM: Jim: Book available on Amazon
AnCan Barniskis Room (to Len Sierra): 5:57 PM: completely missed the whole lymphoma side initially ,,,,,
Rusty (to Everyone): 6:00 PM: Gotta run guys! Have a great night.
Carl Forman (to Everyone): 6:03 PM: Interesting that PSMA scans have been readily available in Australia, but not yet in the US.
AnCan Barniskis Room (to Everyone): 6:04 PM: PSMA on trial in Oz
Jake Hannam (to Organizer(s) Only): 6:29 PM: I do have a question if there is time.
AnCan Barniskis Room (to Everyone): 6:39 PM: University of Indiana PSMA
Mark Perloe (to Everyone): 6:40 PM: Emory and Columbia University have trials now.
Editor’s Pick: Staging your prostate cancer BEFORE treatment ….. and of course – exercise, exercise, exercise!!!
Topics Discussed
Stage your disease before starting recurrence treatment; ADA and ADT; staging your disese before starting any treatment!; PSMA scan vs color doppler; radiating pelvic girdle vs systemic treatment; abscopal effect from RT; persisiting with olaprib; doc says exercise is essential; MyVictory coming soon; PSMA scan in Taiwan; metformin for prostate cancer; foot and hand syndrome from chemo; how long does it take for testosterone to return after ADT?
Chat Log
Dell Jensen (to Everyone): 5:18 PM: I concur. I would wait on the radiation till you are fully healed and have good urinary control
Dell Jensen (to Everyone): 5:19 PM: ADT is necessary to control the cancer.
Peter Kafka (to Everyone): 5:19 PM: What kind of doctor is guiding this gentleman?
Mark Perloe (to Everyone): 5:20 PM: My UCLA med onc suggests that the studies on ADT are primarily with EBRT. There are limited studies on ADT with SBRT. I was told that six months may be sufficient.
Mark Perloe (to Everyone): 5:21 PM: I’d advise a PET Scan with DCFPYL or GA68 PSMA prior to doing a treatment plan.
Peter Kafka (to Everyone): 5:22 PM: Northern or Southern Indiana? How far from Chicago? Probably should do genetic testing and anything else that can be done safely in this Covid-19 climate. Should be under the care of a good GU med onc before embarking on ADT
Dell Jensen (to Everyone): 5:24 PM: Very good doctors at Northwestern
Mark Perloe (to Everyone): 5:40 PM: Is anyone attending PCRI online conference this Friday?
Dell Jensen (to Everyone): 5:47 PM: I wish I could but I have training this weekend
John I. (to Everyone): 6:38 PM: Thanks Mark P. I’ve been searching for a good set of exercises like that
AnCan- rick (to Everyone): 6:40 PM: ….. https://www.radpowerbikes.com/
Carl Forman (Private): 6:47 PM: you mentioned there is possibly someone who may be able to get me a discount for radpowerbikes?
Wang Gao Shan (to Everyone): 6:54 PM: Both UCLA & Taiwan asked if I am currently taking Metformin and if stop taking it before the PSMA scan. Should I wait to start taking the Metformin until I have had the GA68 PSMA scan?
Mark Perloe (to Everyone): 6:59 PM: With MRI’s or any injectable dye, you need to be off metformin for 3-4 days after. You can stop a day or so before or on the day of treatment. Please follow your docs advice. It’s best when you restart that you build up slowly again and not back to full level.
Peter Kafka: 7:01 PM: Got to sign off. My question came to me at 2 am this morning out of working with 2 guys stuck with Kaiser. The question is: Do second opinions within the Kaiser system work or is there too much “company” loyalty within the system?
Editor’s Pick: Tough one this week – a toss up between treatment options for men with recurrent disease …. and finally taking a drug holiday after 3+ years! rd
Topics Discussed
PCRI Virtual Conference 2020; chemo edema disappears overnight; Covid Test; alkaline phosphatase discussed; recurrence treatment options for two of our guys; after 3 years of success – drug holiday!; treating the primary for metastatic men; available PSMA screening trials; starting ADT
Chat Log
AnCan – Rick (to Everyone): 3:08 PM: 877 582 7011 + GtM Support
AnCan – Rick (to Everyone): 3:20 PM: To register for PCRI ….. https://pcri.us7.list-manage.com/track/click?u=e61bab2d681f6500ca8a92f0e&id=ccc38b0e20&e=27da33585f
AnCan – Rick (to Everyone): 3:39 PM: Dennis M’s trial – https://www.clinicaltrials.gov/ct2/show/NCT03437941
AnCan – Rick (to Everyone): 4:05 PM: NGS new rules ….. https://ancan.org/much-excellent-news-from-foundation-medicine/
Len Sierra (to Everyone): 4:14 PM: Trial at Carbone Center: PSMA-based 18F-DCFPyL PET/CT and PET/MRI Pilot Studies in Prostate Cancer Brief Summary: The overall goal of this research is to validate and develop a non-invasive imaging biomarker of prostate cancer detection, progression, and recurrence. Development of such a biomarker may be useful to differentiate indolent from aggressive prostate cancer phenotypes allowing for selection of an appropriate risk adaptive therapy. Principal Investigator: Steven Cho Sex(es): Male Age: 18 Years and over
Rich J (to Everyone): 4:17 PM: Imaging Study to Investigate Safety and Diagnostic Performance of rhPSMA 7.3 (18F) PET Ligand in Suspected Prostate Cancer Recurrence (SPOTLIGHT)
Jeremy (to Everyone): 4:58 PM: UCLA has increased their price to $3K /Users/jeremylew/Desktop/Screen Shot 2020-09-01 at 4.57.31 PM.png
Ken A (to Everyone): 4:59 PM: thanks Jeremy….
Ken A (to Everyone): 4:59 PM: looking at the trial UCLA has….
Jeremy (to Everyone): 4:59 PM: Tried to show the screenshot, but it didn’t post. BUt the price they gave me last week was $2977
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!