Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording Jan 4, 2021
Happy New Year friends … may it be safe and healthy. Welcome to our first group of 2021 along with a few new organizational rules that you’ll hear about.
Editors PickThe Group settles a new man freaked by his diagnosis.(rd)
Topics Discussed
New Canadian Gent wrestles with hot flashes and HT side effects; Optum Rx changes its formulary on a specialty drug; considering different LHRH drugs; back to chemo when low dose abi stops working; denovo MxPCa Dx challenges yet another man mentally; monotherapy darolutamide and abiraterone; Dr. Efstathiou goes AWOL; Prostate Oncology invokes concierge policy; seeing Dr. Singh at Mayo for the first time; always give your doc a list of questions; what to expect when starting chemo
Chat Log Jake Hannam (to Everyone): 6:02 PM:
Our moderators will rotate the meeting chair throughout the month – we are still working on the schedule, and will confirm next week. The meeting hosts will be Rick Davis, Len Sierra, Peter Kafka and Herb Geller. All of us will still do our best to attend evey meeting.
We will use our AnCan blog more frequently to inform you of key developments in the PCa world, rather than taking time at the beginning of meetings. So please sign up to our Blog in the right sidebar to stay informed https://ancan.org/blog/ .
Meetings will start promptly no later than 10 minutes after the appointed start time – 6 pm or 8 pm Eastern. Those arriving later than ‘Ten After’ are still most welcome BUT will be lower priority if they need time. Latecomers will be polled only after all those arriving on time have beeen addressed. Again, LATE means 10 minutes after the start time.
The Moderators are creating a list of questions to help structure the time we dedicate to new men at the start of each meeting. We are limiting new men to 3 per meeting; additonal men will be deferrd to the following week.
Mark Perloe (to Everyone): 6:10 PM: If you are not speaking, please mute your microphone.
Carl Forman (to Everyone): 6:21 PM: Curious if anyone has recently received a letter from their medicare drug plan informing you that your med will no longer be covered in 2021, and you will be paying full price?
Jake Hannam (to Everyone): 6:23 PM: I sure hope not! Medicare Part D?
Frank Fabish (to Everyone): 6:25 PM: I get my treatment through the VA due to Agent Orange. So no limitations.
Carl Forman (to Everyone): 6:25 PM: Yes, Part D coverage. My Olaparib, which has not cost me anything out of pocket, will now possibly cost me $13000-16000 per month!
John A (to Everyone): 6:34 PM: Venlafaxine; Depot Provera
Mark Perloe (to Everyone): 6:41 PM: Please check out GoodRx Gold. I found that I got my meds at a price much less than Part D. Abiraterone was going to be $800 on Part D and $300 on GoodRx Gold. Unfortunately, I now go to three different pharmacies to get my meds.
Len Sierra (to Everyone): 6:42 PM: cyproterone
Peter Kafka (to Everyone): 6:45 PM: I suspect that this year we will see lots of changes in the medical insurance world due to the pandemic and challenges that hospitals are facing. Just my intuition.
Mark Perloe (to Everyone): 6:48 PM: Zejula may be the cheapest. None of the PARP inhibitors are listed in GoodRx.
Len Sierra (to Everyone): 6:51 PM: Talazoparib trade name is Talzenna
Peter Kafka (to Everyone): 6:52 PM: If this is true about Olaparib it will be a problem for women dealing with BRCA2 & 1 mutations as well as some of us guys. I suspect that Women will object
Len Sierra (to Everyone): 6:52 PM: Zejula trade name is niraparib, the generic name.
Mark Perloe (to Everyone): 7:01 PM: For me, 500 abiraterone with food is great. T is undetectable. It actually appeared to be a higher level with the lower dose with food.
Mark Perloe (to Everyone): 7:07 PM: I think if the T is undetectable, then dosing doesn’t really matter. Is the T undetectable? If so, then I doubt increasing will help. I thought the Prednisone vs Dex is about blood pressure to protect against suppression of cortisol.
John Ivory (to Everyone): 7:12 PM: It looks like Abbvie expected to start shipping Lupron again last month (see Lupron Depot 3 month 2nd line in table): https://bit.ly/393xN4L Looks like Takeda (Japanese pharma co) produces Lupron & Takeda claims they had a mfg problem: https://bit.ly/3rVBMZS
Len Sierra (to Everyone): 7:12 PM: Johann de Bono is an author on this paper in BJC: Tumour responses following a steroid switch from prednisone to dexamethasone in castration-resistant prostate cancer patients progressing on abiraterone: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264443/
Mark Perloe (to Everyone): 7:13 PM: This randomized, Open Label Phase 2 study published in JAMA Oncology compared various dosing schedules of prednisone and one for dexamethasone which are used with Zytiga (abiraterone acetate). As you may know, some form of steroid is necessary for use with Zytiga to compensate for its inhibition of natural cortisol production. If not compensated, patients on Zytiga would suffer from a metabolic syndrome known as mineralocorticoid excess (hyperaldosteronism) resulting in hypertension and hypokalemia (low potassium) which could lead to metabolic alkalosis, tetany (muscle cramping) and irregular heart rhythms.
The various prednisone regimens included 5mg once per day, 2.5mg twice per day, and 5mg twice per day. Dexamethasone was given as 0.5mg once per day. For each of these subgroups, the following percentage of patients had no mineralocorticoid excess (a good thing!):
The story of prostate cancer patient, Bryce Olson, is an incredibly inspiring one. Diagnosed at the young age of 44 with de novo metastatic prostate cancer 6 years ago, Bryce’s desire to be here for as long as possible for his young daughter has propelled him to near Rock-Star fame for all patients dealing with advanced cancer. In addition to his penchant for wearing T-Shirts embossed with a heavy-metal gothic font that says, Sequence Me, Bryce has another mantra that he shares with AnCan – “Be your own best advocate.”
Teaming up with various luminaries in the prostate cancer field and high-tech, high-powered bioinformaticians, Bryce is involved in creating a Virtual Tumor Board to help find a cure for his now heavily pre-treated advanced cancer, racing against the clock. He and his collaborators hope to scale up the Virtual Tumor Board concept to help many other individuals as well, in the future. For the uninitiated, a Tumor Board is a treatment planning approach in which a number of doctors who are experts in different specialties review and discuss the medical condition and treatment options of a patient. For prostate cancer, these specialists might include a urologic surgeon, a medical oncologist and a radiation oncologist, among others.
And visit his website here: https://sequenceme.org/ to find out more about his mission to get all advanced cancer patients genome sequenced, and where you can order one of his Sequence Me T-shirts to benefit children with cancer.
Other people do too, as The Hallmark Channel and Lifetime’s viewing schedule would indicate. I’ve been snuggled up with my mom (affectionately known as Mama Jett in the young adult cancer community.) watching a few of the Christmas and Hanukkah selections. Not only are they a wonderful addition to the holiday seasons, but in this year of chaos, they (along with the people of AnCan) remind me this world we call home isn’t so bad after all.
We had our own beautiful story here recently, and I can’t wait to share it with you!
I’m honored to be a moderator for The Chris “CJ” Johnson Foundation/AnCan’sRenal Medullary Carcinoma virtual support group. My dear friend Carlos Moran died of RMC, and his wife Charissa (also a moderator) is part of my family for life. Charissa connected me with Ritchie Johnson (founder of The Chris “CJ” Johnson Foundation), and she’s put me to work for this incredible community ever since. We’ve been well attended ever since the first meeting, which only proves how valuable peer-to-peer support is.
At our December 8th meeting, our beloved friend Joyce came again. She’s had a difficult few months, and is in Hospice. We do what we do, and how we do it for people like Joyce. She dropped in from her phone, and didn’t have to travel anywhere. We made her laugh (one joke was my own donut story!), encouraged her, and made commitments to keep her lifted in prayer. We record our meetings so people who don’t feel well enough can come that night can watch anytime they are comfortable. I encourage you to watch this particular meeting:
One important thing came to our attention. Joyce has been wanting a burger, and we encouraged her to get one. But unfortunately, the cancer related pain makes it impossible for her to take a trip at the drive-thru. The people around her also didn’t want to bring her one, as they felt like cancer patients aren’t allowed to have them.
That wasn’t good enough for us. Team RMC and Rick sprung into action that night, and we were going to get Ms. Joyce her burger. Through emails, phone calls, friends of friends, and internet searches, a solution emerged. Thanks to DoorDash, WE DID IT, even if we are many miles away! She and her daughter, Nevaeh had delicious bacon cheeseburgers, french fries, and vanilla shakes. Thank you so much, DoorDash and Five Guys!
While this may seem so small, it isn’t. RMC is an under funded, researched, and advocated for cancer due to significant health disparities. Related to Sickle Cell Trait, this community does not get the care they deserve. It was always more than a burger, it was a message that we care, and we stand with you.
Joyce, we love you, support you, and are proud to stand with you. There will be many more DoorDash orders in your future! Thank you Ritchie, The Chris “CJ” Johnson Foundation, AnCan, and Team RMC for this amazing happy ending.
No matter what you are celebrating this month, I am reminded by this quote by Rumi;
The lamps are different, but the light is the same.
Decorating a Christmas tree with lights, or lighting the Menorah still produces what we need more of in this world: light.
And in this winter season where the sun sets earlier, we are drawn to the warm illuminating glow that glistens even stronger in the darkness. It’s the same mesmerizing feeling of the sunrise lighting the dark skies, a reminder that each day is a fresh start. I think that’s why AnCan really fulfills our mission of providing support. We understand that cracks are how the light that shines through us. We have all gone through different things, and want to provide “light” to others.
The beauty of light owes it’s existence to the dark – Brené Brown
I encourage you to see the light in the little things, to always look for the stars when it’s dark, and to provide a little light to others wherever you go.
For information on our peer-led video chat RENAL MEDULLARY CARCINOMA VIRTUAL SUPPORT GROUP, click here.
To SIGN UP for the Group or any other of our AnCan Virtual Support groups, visit our Contact Us page.
As I sit here at my house writing this, I’ve already received several calls from our county emergency alert system requesting everyone stay home, because COVID has overloaded our hospitals once again. My Thanksgiving, like yours, looks quite different this year. But I savor the opportunity to pause and reflect upon my blessings none the less. In fact, I feel more grateful than I did last year. And a large part of that is due to the community AnCan has.
One of my favorite people in this world, Fred Rogers from Mister Rogers Neighborhood, has a quote that touches me deeply.
When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping’.
I am so blessed that I get to talk to people every day here at AnCan who are helpers!
I’m so thankful that in these uncertain, stressful, times where in person support is limited, we always have a spot at the table for everyone, no matter where they are, with our virtual support groups.
I’m so thankful for all the amazing people of AnCan. Because I know I have an entire extended family that spans vastly different conditions and demographic factors, but are always here to support me (and you!).
I’m so thankful that we provide men a safe space to talk and support each other. As an advocate in the cancer community, I know there is so much work to be done, but I am grateful to people like Rich Jackson for stepping up and getting it done.
In Gaelige (Irish), we say thank you with the words “go raibh maith agat” (and no, I will not quiz you how to pronounce it!). Literally translated, it means may you have goodness.
I hope the goodness you brought to me returns many times over.
Happy Thanksgiving, and know that we give thanks for you.
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.
