Editor’s Choice:‘Young’ man with little kids faces liver mets; &, good discussion of current clinical trials.
Topics Discussed
55-yr old man sees cancer metastasize to liver; getting a port; chemo fatigue; switching oncs to a GU specialist; ipilimumab+nivolumab; scans if not PSMA avid; edema explained by lymphedema; current trials discussed for mCRPC; staying the course 2nd time around with docetaxel; consider SBRT before IMRT; abi or enz first; 2nd timne around for PSMA, but where?; use the same lab for your tests; Viewray @ UCLA used for salvage RT; fatigue from RT+HT – exercise!
Chat Log
Carl Forman (to Everyone): 5:09 PM: Shana Tova to our Jewish participants.
Herb Geller (to Everyone): 5:10 PM: Thanks, Carl. L’Shana Tovah to all as well
David Muslin (to Everyone): 5:11 PM: L’Shana Tova guys
AnCan Barniskis Room (to Everyone): 5:22 PM: L’shana tova to all … may you all be well inscribed
Len Sierra (to Everyone): 5:34 PM: Talking to children about a parent’s terminal illness. http://tiny.cc/mssysz
John I (to Everyone): 5:34 PM: Fraz, I remember seeing a story like this a long time ago. A guy recorded answers to all the questions his 6 & 8 year olds would have after he was gone. https://abcn.ws/36DOFj4
John I (to Everyone): 5:34 PM: Definitely
John I (to Everyone): 5:35 PM: I’m not as qualified as you, but happy to help when it gets tough for you
John I (to Everyone): 5:46 PM: The Under 60 group is this Thursday (in 3 days) 7 pm – 8:30 pm EDT
Mark Perloe (to Everyone): 6:28 PM: might Alan be eligible for a 177 Lu clinical trial?
alan moskowitz (to Everyone): 6:44 PM: Mark – I would be reluctant to do that Lu trial – I think one needs to have exhausted other conventional treatments first. In my mind it is too experimental in nature – but it is on my Radar.
Carl Forman (to Everyone): 6:54 PM: Global Knowledge Exchange Webinar: NEXT GENERATION PSMA 6 speakers + Q&A; beta, alpha, auger + more Register here: http://bit.ly/nextgenpsma Proudly hosted by @pros_tic @PCF_Science Oct 7 12PM PT 3PM ET
Mark Perloe (to Everyone): 7:06 PM: consider ViewRay SBRT 5 days with no fiducials or spaceOAR. See ViewRay.com. I finished today.
Mark Perloe (to Everyone): 7:09 PM: Thanks Rick. such good advice.
Recently a very good friend of AnCan’s introduced me to Dr. Moyez Jiwad the Co-Editor for The Journal of Health Design. Dr. Jiwad has a podcast interviewing interesting and unusual actors in the healthcare field. I guess he concluded that “Yours Truly” qualified on both accounts, so Dr. J and I sat down about 3 weeks ago – late on a Sunday afternoon, early Monday morning for him in Oz.
The first time I listened to one of Moyez’ interviews, and many are worth a listen, his Irish accent stood right out – probably because I was not expecting to hear those gentle, melodic tones from a Kenyan born Asian living in Melbourne, Australia!
Dr. J was a delight to speak with, and you can hear the results by listening to our audio interview. https://www.journalofhealthdesign.com/JHD/podcasts/view/319 We delve into what motivated me to work in this field and how AnCan came about.
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?
Many of you already know, AnCan works closely with Foundation Medicine Inc who offer Next Generation Sequencing (NGS) somatic liquid and solid tumor testing.
Here are THREE great pieces of news shared with us over the past few days:
The ‘new & improved’ Liquid CDx Test was FDA approved late last week, meaning this test now covers the same 300+ mutation panel as the solid tumor test – but at the prick of a needle! . Read their full press release here.
Medicare considers the Liquid test to be separate and independent from the Solid Tumor test meaning both are covered for the same individual at different times.
AND that’s not all ….. finally we have a decision back from FMI that repeat testing for either Liquid or Solid is Medicare covered IF there is disease progression. In FMI’s words (that we are approved to disseminate):
AnCan’s always advocating for you ……. and thanks to the FMI team for pursuing this, especially Senior Manager for Patient Engagement, our good friend David Marshak!
