We have some wonderful thoughts once again from our Board Chair, moderator, and most important, our dear friend Peter Kafka. On the week that we spend reflecting on what we are grateful for, Peter has story that will offer perspective on thankfulness. We are so thankful for YOU, Peter! Aloha.
As hospitalizations for Covid-19 surge across the nation and opportunities for visitation at hospitals close down, the subject of “closure” comes up more often. I recently had an experience which brought this matter up in a new light that I thought worth sharing. A week ago, a good friend passed away as a result of recurrent colorectal cancer. He had exhausted all treatment options available to him and was under hospice care at home with his devoted wife of many years providing the major care and support. He remained lucid and at rest until the end.
This couple had a large network of family and friends around N. America and world-wide. One close friend took it upon herself to arrange for a Zoom conference meeting the weekend before the departure. Many of this man’s friends and relatives were present on this Zoom call including his wife who was within ear-shot and sight of her husband who could hear the conversation.
This was something of a transformative event for me and all involved because it gave us opportunity to say goodbye, to tell poignant stories, and reflect on the precious value of our individual friendships with this gentleman in real time while he could still receive our thoughts and wishes. The timing was perfect and there was a good measure of closure for all involved.
Usually our culture dictates that some form of closure be recreated in a ceremony or service after one departs. But these days even this opportunity is limited or non-existent because of the strict rules regarding gatherings and the dangers of travel. I have always thought that thankfulness was and should be primarily an anticipatory act rather than something expressed after the fact. I would suggest that in this holiday season of seeming isolation that we find ways to express THANKS for/ to what IS as well as what was.
Things don’t always go the way we plan … or want.- from the recent elections to our health, to just taking care of daily biz. We have to be careful how that impacts the way we interact with others. Peter’s thoughts crystalllize how our emotions can impact many more than just us (rd)
“WINNING AND LOSING”
As I sit at my desk, it is Monday morning November 2nd the day before election day. I woke up this morning thinking of this theme and how applicable it is to those of us dealing with a cancer diagnosis. In our case a diagnosis of Prostate Cancer.
For 24 years my final career was as a maintenance supervisor for Haleakala National Park. One of my duties in that position was to be a Heli-Manager. This involved coordinating and managing the ground operations for the periodic use of contract helicopters that we used to transport firewood and other materials to the Park’s historic backcountry cabins. This job had many inherent dangers including hooking up a swivel cable to the belly of a helicopter hovering just a foot or two over my head, loading cargo nets with materials to be sling loaded to the drop sites, calculating the weights of each load, ensuring the safety of myself and that of the rest of my ground crew and communicating by radio to the pilot and others of my crew on the receiving end of the cargo. It was a lot to keep track of, and it required a high level of intensity and concentration.
One Monday morning during this operation one of my employees came to work, and his home state professional football team had lost in the playoffs the day before. He was pretty bummed out. So bummed out that I didn’t take it seriously at first. Afterall, football was just a game in my mind. Life goes on. But in his mind, it was pretty close to the end of the world. I tried my best to get him to “let it go”. But he would not drop his gloomy attitude of defeat. It was so pervasive in him and he would not stop talking about it to the rest of the crew. It was becoming a big distraction and for the safety of our task at hand I had to send him off to do another job on his own far away from our helicopter operations.
I bring up this story because it is all too easy to associate a cancer diagnosis with somehow losing. This can be an insidious and infectious attitude that can not only weigh down ourselves, but those around us including family, friends and even our medical support community. An exaggerated negative attitude and clinging to the feeling that one has “lost” can be a dangerous distraction.
In the bigger picture, we have not lost. Our bodies might be quite challenged due to our diagnosis, but we still have a vital part to play in our family, our workplace, our community and it is NOT to infect all of these others with a bummed-out attitude lest we drive them away, and we quickly will.
Our attitude, like diet and exercise is one of the key things that we have absolute control over. In my own experience if I find myself starting to wake up on the wrong side of the bed, I rearrange the furniture and put THAT side of the bed against the wall so that I have to wake up on the RIGHT side. Bottom line, take responsibility for your own attitude!
Editor’s Choice:While there’s lots of talk about PSMA scans this week, the discussion around tolerating abiraterone v. enzalutamide is my pick! (rd)
Topics Discussed
Denovo Mx diagnosis has been through most treatment options – what next?; SBRT for recurrence – Part 1 almost over; looking at trials for advanced Mx disease; abi better tolerated than enz – but what about others?; Spot RT slows doubling time – is that enough without ADT?; PSA-progression recurrence shows nothing on PSMA scan – what treatment?; man with recurrence finds an invitation-only PSMA scan; long time Mx survivor seeks PSMA scan; denovo Mx man received less than standard care and now seeks GU med onc
Chat Log
Len Sierra (to Everyone): 6:33 PM: BiTe = Bispecific T-cell Engager
Len Sierra (to Everyone): 6:35 PM: Talabostat is an experimental drug that initiates an inflammatory response in the tumor microenvironment, converting cold tumors to hot tumors and thereby making them better targets for checkpoint inhibitors, like pembro or nivolumab.
Jake Hannam (to Everyone): 6:37 PM: Why give up on enzi after just one month?
Jake Hannam (to Everyone): 6:41 PM: AR V7
Jake Hannam (to Everyone): 6:46 PM: rd@ancan.org
Mark (to Everyone): 7:04 PM: Isn’t Blue Earth for Axumin and rh-PSMA
Mark (to Everyone): 7:15 PM: Abi blocks steroid production. Won’t levels still be zero with monotherapy?
Len Sierra (to Everyone): 7:17 PM: Mark, there was a trial showing that Abi alone was just as effective in suppressing T-levels as Abi + Lupron.
Herb Geller (to Everyone): 7:27 PM: Concomitant intake of abiraterone acetate and food to increase pharmacokinetic exposure: real life data from a therapeutic drug monitoring programme By:Groenland, SL (Groenland, Stefanie L.)[ 1 ] ; van Nuland, M (van Nuland, Merel)[ 2 ] ; Bergman, AM (Bergman, Andries M.)[ 3 ] ; de Feijter, JM (de Feijter, Jeantine M.)[ 3 ] ; Dezentje, VO (Dezentje, Vincent O.)[ 3 ] ; Rosing, H (Rosing, Hilde)[ 2 ] ; Beijnen, JH (Beijnen, Jos H.)[ 2,4 ] ; Huitema, ADR (Huitema, Alwin D. R.)[ 2,5 ] ; Steeghs, N (Steeghs, Neeltje)[ 1 ] EUROPEAN JOURNAL OF CANCER Volume: 130 Pages: 32-38 DOI: 10.1016/j.ejca.2020.02.012 Published: MAY 2020
Mark (to Organizer(s) Only): 7:34 PM: The abstract did not show a lower dose, just ok for light snack.
Len Sierra (to Everyone): 7:41 PM: From Allen Edel: About 90-95% of metastatic men express at least some PSMA on their prostate cancer cells. Less aggressive PCa produces much less PSMA.
Ancan – rick : 7:42 PM: color.com
Mark (to Everyone): 8:07 PM: This is the low dose abiraterone article: J Clin Oncol . 2018 May 10;36(14):1389-1395. doi: 10.1200/JCO.2017.76.4381.
Editor’s Pick The estrogen discussion is a rare topic in this forum; and, we finally pick apart IHT for one of our gents. (rd)
Topics Discussed
Estrogen and prostate cancer; 2018 denovo metastatic PCa diagnosis treated with Lupron alone; issues to raise re. Intermittent Hormone Therapy; docetaxel and HT may no longer be working; are lesions in the prostate bed considered oligometastatic disease?; Ph 1 trial experience; Jake appointed our Official Muter!; Eary success with ViewRay; Eligard vs Lupron: even after years, PSA wandering in a anarrow range well below 1.0′ Provenge.
Chat Log
AnCan – rick (to Everyone): 3:17 PM: Direct to our AnCan blog https://ancan.org/blog/
Mark Perloe (to Everyone): 3:23 PM: Does anyone.know if abiraterone has an effect on cholesterol?
Len Sierra (to Everyone): 3:25 PM: Abiraterone contributes to metabolic syndrome which raises cholesterol.
Larry Fish (to Everyone): 3:33 PM: how long for PSA fo go to 1.7 from .02 any idea of doubling time
Mark Perloe (to Everyone): 3:40 PM: Without treatment of the prostate with surgery or radiation, I find it hard to see it really go that low by just Lupron. I also wonder what tracer was used for PET scan.
Peter Kafka (Private): 3:40 PM: Has Tony had a biopsy? He did not say. Does he have a GL score? All he said was Stage 4
AnCan – rick (to Everyone): 3:41 PM: Mark ….. lupron can drive and keep it that low. We used to see that frequently Mark Perloe (to Everyone): 3:42 PM: Would he possibly benefit from radiation of prostate hoping for the abscopal effect. Would abiraterone be more appropriate than a receptor blocker?
Joel Blanchette (to Everyone): 3:43 PM: Dr. Mohammad Rahman, MD is a Medical Oncology Specialist in Steubenville, OH and has over 35 years of experience in the medical field. He graduated from Dow Med Coll medical school in 1985. He is affiliated with medical facilities East Liverpool City Hospital and Trinity Medical Center East. He is accepting new patients. Be sure to call ahead with Dr. Rahman to book an appointment.
Mark Perloe (to Everyone): 3:46 PM: FDA approved a urine liquid biopsy for prostate CA miR Sentinnel PCC4 Assay. pretty good sensitivity 94% and specificity 92%. It is used to predict presence of CA and asses the risk of high-grade tumors. Not sure I’ve seen any liquid biopsies that can be used to follow or monitor treatment.
Larry Fish (to Everyone): 3:47 PM: He is a Hemotologist
John I (to Everyone): 3:48 PM: Looks like Dr. Rahman is a generalist medical oncologist –many things conditions treated, but not PCa Ovarian Cancer Malignant Neoplasm of Female Breast, Melanoma, Non-Hodgkin’s Lymphoma, Lung Cancer, Bladder Cancer, Gastric Cancer, Hodgkin’s Lymphoma, Malignant Neoplasm of Colon, Testicular Cancer, Pancreatic Cancer. Leukemia, Rectal, Abdomen, Small Intestines, or Colon Cancer, Multiple Myeloma
John I (to Everyone): 3:48 PM: https://wb.md/3mpPxN1
Tracy Saville (to Everyone): 3:54 PM: I have to drop off, everything going well here. see you guys next week.
John I (to Everyone): 4:16 PM: I hadn’t seen the UCSF pamphlet on hormone therapy before. For anyone else who hasn’t, it’s here: https://bit.ly/2HDyhVl
AnCan – rick (to Everyone): 4:38 PM: If you are failing the chemo, then a couple of strategies occur to me, Ken. 1. Rechallenge with a second line anti-androgen – either abi or a blocker 2. Switch to a different chemo combination like cabazitaxel 3. Sequence again and see if there is anything new to treat. 4. Consider a bi-specific trial … viz AmGen, Xencor, Regeneron BiTE (AMG 509) in Greensville …… ClinicalTrials.gov Identifier: NCT04221542 Xencor XmAb20717 in Charlottesville ClinicalTrials.gov Identifier: NCT03517488
Herb Geller (to Everyone): 5:01 PM: Sorry. Gotta eat dinner. See you Monday.
James Barnes (to Everyone): 5:03 PM: Good night guys! Great meeting!
Jim Ward (to Everyone): 5:04 PM: Good night, gents. Thanks for the input re intermittent ADT! The cancer center where I’m receiving Lupron in Tallahassee, FL only had a 1-month Lupron shot availble for my last shot. So, it looks like I’m going with monthly shots for now.
John I (to Everyone): 5:11 PM: Gotta run–wishing everyone a great week!
James Doyle (to Everyone): 5:12 PM: Thanks for your input and be safe. :-(])
Dr. Brian Helfand, (Head of Urology at NorthShore University HealthSystem) gave the second webinar in the four-part series called “Active Surveillance & Beyond” on September 29, 2020. His topic was genomics, genetics, and decision-making in active surveillance. He explains the pros and cons of the leading tests in the field and who may be a candidate for such testing. We want to thank Dr. Helfand for taking the time to answer several of our attendees’ questions at the end of his excellent presentation.
Also making an appearance, our AS Virtual Support Group moderators and community members, Joe Gallo, Elliot Kerman, Howard Wolinsky. Including special guests: Jim Schraidt (Chairman of Us TOO), and Beau Stubblefield-Tave (Executive Director at Us TOO).
Watch this fascinating and informative webinar here:
