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 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: 54 yr. old man w. denovo metastatic disease and significant anemia – is it all due to prostate cancer.
Topics Discussed
Denovo metastatic Dx with very significant anemia; 3-7 day break in PARP to see if it alleviates side effects; abdominal hernia; blood clots from PARP; switching to abi to avoid enz side effects; returning from 24 months HT; SPOP mutation – docetaxel resistance; chemo reduces PSA; heartburn/GERD & abi; Axumin & Insurance; glucocortisoid trial; intermittent hormone therapy
Chat Log
Rich J : 3:41 PM: Have a lymph node needle biopsy scheduled for 22 Sept, radiologist choice of location. Was interested in advice on recovery, but, don’t expect anything unusual. Tracy needs the time. No time for me, thanks.
John I. (to Everyone): 3:44 PM: Tracy, this is a good resource for diet & exercise, esp. the guide you sign up for (free) https://www.pcf.org/patient-resources/living-prostate-cancer/
AnCan – Rick (to Rich J): 3:47 PM: Let’s ask other guys about lymph Bx Rich J (Private): 3:47 PM: I have to leave in about 10 minutes to support my local group.
Rich J (Private): 3:49 PM: CT guided needle biopsy, left groin area, middle ansthesia, Brenda has to drive, but I won’t be out. I be fine. 🙂
John I. (to Everyone): 3:51 PM: Tracy, my doc let’s me tape our conversations with my phone in case I miss anything in my notes
Herb Geller (to Everyone): 4:26 PM: https://www.urotoday.com/conference-highlights/asco-2019-annual-meeting/asco-2019-prostate-cancer/113079-asco-2019-suppression-of-testosterone-production-using-abiraterone-acetate-with-or-without-androgen-deprivation-therapy-in-metastatic-castration-resistant-prostate-cancer.html
AnCan – Rick (to Len Sierra): 4:28 PM: David — abi works differently to the androgen blockers. Every man responds differently – hard to know how you would respond.
AnCan – Rick (to David Muslin): 4:28 PM: David — abi works differently to the androgen blockers. Every man responds differently – hard to know how you would respond.
David Muslin (Private): 4:29 PM: Thanks Rick. I’ll give it a try and we’ll find out.
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
AnCan has the distinct honor to partner with one of the pre-eminent MS couples in our Nation, Dan & Jennifer Digmann (A Couple Takes on MS). They co-moderate our Multiple Sclerosis videochat virtual support group along with 3 others peer moderators; and are now producing the 3rd webinar in AnCan’s The TALK Series that will focus on MS. Here is Jen’s post from their own Blog published last week. If you know anyone living with MS … or their families, please forward! (rd)
Dan and I have spent the past several months working with AnCan to organize and coordinate an incredibly important online event that will help families living with Multiple Sclerosis.
We are beyond thrilled to invite you to “The Talk – Multiple Sclerosis …. Speaking to Your Family About Your Disease.”
Here is what you need to know about this free webinar:
• It is scheduled for 8 p.m. EST Wednesday, September 30.
• Four families from throughout the United States will share their diverse stories and experiences of communicating about MS.
• Brenda Miller, an MS certified nurse and MS patient, will moderate the conversation.
• You must register to participate, so we encourage you to register today!
Check back here in the coming weeks for further details about “The Talk – Multiple Sclerosis …. Speaking to Your Family About Your Disease.” And remember to take the time to register to participate.
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!
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!
