Make sure you’ve signed up for our upcoming Connect Education Workshops! These free workshops provide the latest cancer information straight from leading experts, via phone or online. At the end of the workshop, you’ll have a chance to ask the experts your own questions. Register by clicking on the selected link below.
Editor’s Pick: This week’s group is dominated by U-60 men diagnosed denovo metastatic – we speak to FIVE (5)!!!!! USPSTF HEAR THAT!!! A good discussion on abi side effects … AND A HYPERACTIVE CHAT LOG!!
Topics Discussed
Misdiagnosed 1st time leads to denovo Mx Dx for U-60 man 2nd time; post-RP spread managed for 10 yrs w/o HT; 25+ yrs living with G9 advanced PCa!; Keytruda trial for MSI stable man post-olaparib; Rusty’s 1st Football game post-HT!; abiraterone side effects; blood pressure issues from 2nd lin anti-androgens; glucocosticorteroid + enz trial; enz + LHRH for another U-60 denovo Mx man; yet another U-60 denovo Mx man starts RT; enz preferred with heart disease; cancer or sarcoidosis?
Chat Log
scott (to Everyone): 5:03 PM: Sylvester how are you doing?
David Muslin (to Everyone): 5:21 PM: Nicklas Robert Pfanzelter, M.D. (89 ratings) NorthShore Medical Group 847.503.1000 Conditions Adrenal Cancer, Basal Cell Cancer (BCC), Bladder Cancer, Genitourinary Cancer, Kidney Cancer, Lung Cancer, Melanoma, Merkel Cell Cancer, Prostate Cancer, Testicular Cancer, Transitional Cell Carcinoma, Urinary Tract Cancer Procedures Chemotherapy
John I (to Everyone): 5:26 PM: genitourinary
Len Sierra (to Everyone): 5:26 PM: GU = Genitourinary Oncologist
John I (to Everyone): 5:26 PM: (GU) medical oncologist (GU Med Onc)
Joel Blanchette (to Everyone): 5:27 PM: He is close to Alicia Morgans, GU Medical Oncologist
Mark Perloe (to Everyone): 5:27 PM: Alicia is great.
AnCan – rick (to Everyone): 5:28 PM: We are getting there gents …..
John I (to Everyone): 5:28 PM: She’s my doc. very good doc, good at answering questions, taking her time
Mark Perloe (to Everyone): 5:28 PM: I’d also consider OncocyteDX liquid biopsy as up to 50% of the mutations are limited to the tumor and are not inherited.
Jerry Pelfrey (to Everyone): 5:28 PM: do not forget Proton pencil beam as a choice
Ken A (Private): 5:29 PM: advise please on under 60 group
Len Sierra (to Everyone): 5:29 PM: Lynch Syndrome
Mark Perloe (to Everyone): 5:30 PM: SBRT with ViewRay, a device which marries MRI and Linear Accelerator can get treatment for five times. Visit ViewRay.com
Ken Doyle (to Everyone): 5:31 PM: Ken Doyle Info. Age 75, mPC after prostate removal in 2010
Herb Geller (to Everyone): 5:34 PM: BRCA1 or BRCA2
Jake Hannam (to Everyone): 5:34 PM: BRCA mutation
John I (to Everyone): 5:36 PM: I also had a good experience with Russell Szmulewitz at UChicago too–had to change because of insurance network changes
Carl Forman (to Everyone): 5:41 PM: In case I don’t have a chance to speak tonite, I wanted to throw out to the group if anyone has had experience with Keytruda, which has been dicussed by my Oncologist as a clinical trial treatment option for me.
AnCan – rick (to Everyone): 5:41 PM: Big subject Carl – should be discussed.
Ken A (to Everyone): 5:42 PM: Carl – Paul has advise me that it was in my future…
John I (to Everyone): 5:45 PM: active surveillance
Jake Hannam (to Everyone): 5:45 PM: active surveillance
Jake Hannam (to Everyone): 5:47 PM: Axumin
Jake Hannam (to Everyone): 5:49 PM: PSMA
scott (to Everyone): 5:52 PM: gentlemen: I have to go at 6 pm to make dinner….see you on another call
Ken A (to Everyone): 5:53 PM: hey Scott lets try that lunch once again.
Peter Kafka (to Organizer(s) Only): 6:00 PM: Wow! A 30 year journey as a GL-9 with BRCA +, A poster man! I hope I get half that kind of run.
Ken A (to Everyone): 6:02 PM: Dang I agree 100 percent…..
Peter Kafka (to Organizer(s) Only): 6:34 PM: Just letting you all know that I spent 2 hours on the phone with my buddy Mr. Sharma in Delhi, India the other day. This was my 2nd round with Del Service from India. I think we got my sound problems resolved this time. I now have a 1-year service contract and Sharma recommended that I check in at least every 2 months if not every month for a “tune up”.
AnCan – rick (to Everyone): 6:40 PM: Theraworks
John I (to Everyone): 6:42 PM: spelled theraworx
AnCan – rick (to Everyone): 6:42 PM: tx John
Jeffrey Bates (Private): 6:43 PM: Thanks John
Jeffrey Bates (Private): 6:54 PM: who is the balding man with glasses an grey/black goatee. he is sitting on couch with blue blanket behind him and a window
AnCan – rick (to Jeffrey Bates): 7:02 PM: John Ivory also young like you; in Chicago.
John I (to Everyone): 7:02 PM: Yes–you saw it?
AnCan – rick (to John I): 7:03 PM: Please connect with Jeff B
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!
Editor’s Pick: Brain fog is a familiar subject to many who follow our group … today we pick it apart!
Topics Duscussed
Clinical trial ins & outs; lymphedema, edema and acupuncture; PSMA scan availability; germline mutations; colonoscopies and anaesthetic; mangaing progression with spot SBRT; combating brain fog; port installation; SBRT radiation to the gland; PSA nadir; abi, enz and hypertension..
Chat Log
John I (to Everyone): 3:35 PM: Haha, thanks–it’s the sweatshirt for the cold Chicago winter 🙂
John I (to Everyone): 3:37 PM: It’s FANTASTIC right now. Sitting outside because there will be few days (or hours?) left that are warm
John I (to Everyone): 3:38 PM: Nice fall colors too–will probably peak in the next week
Len Sierra (to Everyone): 3:38 PM: I have the sweatshirt, too. Very warm and soft. Nice job, Peter and Jeffrey, his son.
Lou (to Everyone): 3:55 PM: going to conference on ui and ed @7
Peter Kafka (to Everyone): 4:03 PM: I have two sweatshirts in my closet and have to wait until February before the weather is cold enough to wear them here on Maui.
Rusty (to Everyone): 4:39 PM: Complete Fall in NH, peak colors this weekend. Snow in the mountains later this week. Our 8 weeks of summer were nice though.
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.
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!