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.
On Saturday, December 5th I had the amazing honor of not only being around amazing people, but I got to do it all proudly representing AnCan as well! I attended the Pushing Past Cancer: Stronger Together Virtual AYA Summit presented by UCLA Health AYA Cancer Program, UC Davis Comprehensive Cancer Center, and Stupid Cancer.
AYA stands for Adolescent and Young Adult in the cancer community, and I hope the terminology will extend in all of medicine. The age range is typically around 15-39, but up to 45 is being more widely accepted now. Our population has a lot of specific issues that pediatric and adult sides of oncology can’t fully reach. Dating, fertility, sexual health, work, college, and mental health are big concerns in our community.
I really enjoyed the conference tackling these issues in a way that’s comfortable for us. My favorite webinar was “Mental Health After Treatment” with Dr. Valentina Ogaryan (Licensed Clinical Psychologist at UCLA Simms Mann Center for Integrative Oncology). She talked about how important support is at any part of a cancer diagnosis. A neat term she used was “the support squad” (which is a great shout out to millennials!), and explained what yours could look like.
One of the closing panels about “What I’d Wish I’d Known…” was just incredible. To hear my peers voice the same feelings I had, and continue to have, was affirming and encouraging. No matter what the diagnosis, we still share similar anxieties and experiences.
An awesome highlight of the day was my team (The Orange Blossoms, because we all had a connection to the color orange, mine is my hair color!) won second place at the trivia after party. Fun fact: a lot of us here at AnCan love trivia games, and I had a lively conversation with Rickand Kim Stroeh about it. An AnCan trivia night would certainly be filled with stiff competition.
Stay tuned, because we will be offering even more support for AYA’s in the upcoming year. We have lots of great things in the works, and I can’t wait to share them with you. We’d love to be a member of your support squad.
Editor’s Pick Good discussions on BiTE treatments and post-RP adjuvant therapy but wait to the very end for a big surprise when we discuss Wisconsin ginseng! (rd)
Topics Discussed
recurrence post-RP; how long to remain on HT w. adjuvant radiation; prospective breast cancer and lupus issues; PSA pattern during chemo regime; discussing BiTE treatments for PCa; stopping LHRH post adjuvant therapy; prepping for SBRT; metastatic patient may be ready for a 2nd opinion; PSMA availability post-FDA approval; CT body scan raises concern; American (Wisconsin) ginseng
Chat Log
Bob McHugh (to Everyone): 6:07 PM: I’m new
Ben Nathanson (to Everyone): 6:55 PM: Jimmy: “How to Restore Urinary Continence After Prostate Cancer Treatment”. Recorded two days ago — toward the end, explanation of several kinds of electric therapy. https://www.youtube.com/watch?v=3aKkRg8-HmY
Ancan – rick (to Everyone): 6:59 PM: https://www.cogentixmedical.com/ who bought uroplasty
Rusty (to Everyone): 7:02 PM: Having a mamogram on Friday for breast cancer and ust diagnosed with Lupus.
The Active Surveillance path in Prostate Cancer comes with a lot of questions, and that’s why we are always so glad to offer support and resources. On December 2nd, in our AS prostate cancer virtual support group, we had the utmost pleasure of hosting Dr. Judd W. Moul, MD, FACS (Professor of Surgery at Duke University), who happens to be one of the top experts in the field of Prostate Cancer!
He shares a wonderful dialogue about AS, and answers many of our attendee’s questions. Our own moderators learned something new. Thank you so much, Dr. Moul!
Watch this informative special presentation here:
For information on our peer-led video chat ACTIVE SURVEILLANCE PROSTATE CANCER 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.
NB Our regular 4th Tuesday Meeting has been moved to the 3rd Tuesday, Dec 15 at 6 pm Eastern just for this month owing to a calendar quirk.
Editor’s Pick The big PCa news this week is the breakthrough FDA approval that will surely herald wider approvals in coming months. We discuss in detail upfront! rd
Topics Discussed
68Ga PSMA 11 FDA approval; recurrence w. high PSA but no evidence; PARP-I fails – what next?; cancer and inflammation; zoledronic acid vs denosumab & Xgeva v Prolia; cabazitaxel vs docetaxel; darolutamide Nubeqa; GU med onc in NW Florida; Fighting hot flashes; switching up when Mx disease is stable
Chat Log
Frank Fabish (to Everyone): 4:29 PM: Can anyone compare chemo docetaxel vs cabazitaxel
AnCan – Rick (to Joe): 4:36 PM: WELCOME Joe …. you got a haircut!!!
Joe (Private): 4:42 PM: yea I did! Building and ice boat http://www.isabella-iceboat.com/9902255.jpg huge group!
alan moskowitz (to Everyone): 4:50 PM: dr Oh – 1-212-824-8855 direct to his office. https://www.mountsinai.org/profiles/william-oh
Len Sierra (to Everyone): 4:51 PM: Dr. William Oh: 212-659-5412
Tracy Saville (to Everyone): 4:55 PM: I like hearing comments re: longevity and health status. It really puts things in perspective for those of us that were detected stage 4. THX for that.
Joe (to Everyone): 4:56 PM: great to see you all…sorry to be late and to have to bug out early…come to WY and we’ll sail the ice boat https://www.google.com/search?client=firefox-b-1-d&q=isabella+classic+ice+boat
Peter Haake (to Everyone): 4:56 PM: Thanks for the info..
Jim Ward (to Everyone): 4:58 PM: This may or may not related to PC, but has anyone in this group had a symptomatic inguinal hernia that needed surgery? If so, perhaps respond with a private note for dicussion off-line. Thank you.
David Muslin (to Everyone): 5:11 PM: Tracey, I could not agree more. That’s what Ancan all about for me. We are not alone…..
John I (to Everyone): 5:11 PM: I didn’t have any pain but my doc recommended surgery so that it didn’t worsen & cause complications. I had the laparascopic procedure with the mesh and I think it was in ~1998 and I haven’t had a problem with it. It would have been a simple outpatient procedure, but my lung collapsed during surgery, so I needed to stay overnight.
Carl Forman (Private): 5:17 PM: Need to sign off. See you next time. Will ask Oncologist again about abi. Thanks.
Peter Haake (to Everyone): 5:17 PM: That’s interesting, I had hernia surgery 2008?. Never made that connection
John I (to Everyone): 5:26 PM: Gotta run. Thanks, Rick & everyone, for letting me go early. See you next time.
Herb Geller (to Everyone): 5:29 PM: NUBEQA™ (darolutamide) – Official Physician Site
Lou (to Everyone): 5:33 PM: btw, I did the market survey interview you spoke about last month. It was easy and took 45 minutes for a pay of $100. They messed up first appointment so they paid me for that session also.
Len Sierra (to Everyone): 5:33 PM: Dr. Elizabeth Guancial, Sarasota Downtown 1970 Golf Street Sarasota, Florida 34236 SCHEDULE AN APPOINTMENT:Call: (941) 957-1000
Tracy Saville (to Everyone): 5:36 PM: I was successful with the $500 Cancer and Careers grant. Anyone else?
Ken A (to Everyone): 5:36 PM: congrats Tracy….. I also!
Tracy Saville (to Everyone): 5:46 PM: i have to drop off, mac battery is nil. thx, everyone. great meeting.
Peter Kafka (Private): 5:52 PM: Dr. Jamie Abraham at Cleveland Clinic is not a genitourinary med onc. His specialty is hemotology and breast cancer. I am sure there is someone better at Cleveland
After ourfirstand second webinar in our series “Active Surveillance and Beyond”, we had the absolute pleasure of having radiologist Dr. Antonio Westphalen (Head of abdominal imaging at the University of Washington in Seattle.) for our third one.
Dr. Westphalen entitled his program,”The Value of mpMRI in Monitoring Men on Active Surveillance.” He discussed how mpMRI is an important factor in diagnosing and surveilling prostate cancer in active surveillance. But he said other factors need to be taken into account, including PSA testing, digital rectal exams, and genomic testing.
We want to graciously thank Dr. Westphalen for answering our attendee’s questions!
Today’s announcement from the FDA has been long awaited by the prostate cancer community. We expect several more PSMA-PET approvals to follow in the coming weeks.
This approval is based on studies led by Prostate Cancer Foundation-funded investigators Dr. Thomas Hope at UCSF and Dr. Czernin and Dr. Calais at UCLA. The team conducted a series of clinical trials which demonstrated the improved sensitivity of 68Ga-PSMA-11 PET for detecting sites of recurrent prostate cancer in men with rising PSA levels after surgery or radiation therapy, and for detecting sites of metastases in men newly diagnosed with high-risk prostate cancer.
Compared to the scans currently used for prostate cancer detection, such as CT, bone scans, and MRI, PSMA PET is more sensitive and can detect much smaller prostate cancer metastases. Several of AnCan’s members have already received PSMA PET scans in clinical trials and we have personally experienced negative scans with the old technology and then positive scans with the PSMA agents and it has changed our treatment decisions. PSMA PET can now be used for initial and subsequent management decisions in patients with prostate cancer, in order to determine if and where they have metastases.
At present, 68Ga-PSMA-11 PET scanning will be available at only UCLA and UCSF. Radiopharmaceutical companies will likely apply for expedited FDA approval to make 68Ga-PSMA-11 “kits” so that this technique will eventually be available to more patients throughout the US.
No serious adverse reactions were attributed to Ga 68 PSMA-11. There is a risk for misdiagnosis because Ga 68 PSMA-11 binding may occur in other types of cancer as well as certain non-malignant processes which may lead to image interpretation errors. There are radiation risks because Ga 68 PSMA-11 contributes to a patient’s overall long-term cumulative radiation exposure, which is associated with an increased risk for cancer, however small.
To read the full stories of this approval, please click on these links from the FDA and from the Prostate Cancer Foundation (PCF):
At AnCan, we LOVE friends! And helping you get resources you need to empower you to “Be Your Own Best Advocate!” Here are some great, informative, and FREE resources from our partner CancerCare. Be sure and check them out!
Happy Thanksgiving to all our Audience ….. may it be healthy, safe and still delicious – don’t forget the exercise! ….. from your AnCan PCa Moderators
Editor’s Choice: We discuss a rare form of prostate cancer this week – ductal adenocarcinoma!
Topics Discussed
Recurrent ductal adenocarcinoma PCa; PSMA scans; newbie needs help dealing with hot flashes… and maybe doctors?; glucocorticoid + enz trial not working; qualifying for Axumin scan insurance coverage; chemo considerations; what ‘morphed’ PCa means; calcium and parathyroid issues; lupus and breast cancer considerations; dealing mentally with long term treatment; measuring T level rasies an issue; PARP-I failing for BRCA man
Chat Log
Jim Ward (to Everyone): 4:31 PM: Could someone please type the name of this rare form of PC? Thanks!
AnCan – rick (to Everyone): 4:31 PM: ductal adenocarcinoma
John I (to Everyone): 5:04 PM: Nutrition & Prostate Cancer plenary https://youtu.be/uwMZinYekGU Nutrition for Active Surveillance https://youtu.be/A7b3StqcXro Mark Perloe (to Everyone): 5:11 PM: Fred Hutchins Cancer Center in Seattle has a great playlist of exercise for prostate CA.
Mark Perloe (to Everyone): 5:18 PM: Dennis, Have you discussed consideration of AR-V7? If the mets are bone mets, are they discussing a Lu177 consideration?
Frank Fabish (to Everyone): 5:23 PM: Testosterone today 15. last month 298. Had 2nd firmagon injection today. Doc wants to continue monthly firmagon. Wants to start chemo evry 3 weeks for 6 treatments docetaxel because of metastatic PC to lungs. Then to follow up with apalutimide along with firmagon injections. PSA .78. Last month 2,82
AnCan Barniskis Room (to Everyone): 5:25 PM: Weill Cornell and Tulane are running LU177 trials for metastatic castrate resistant PCa. Also UCSF is recruiting for LU177 and Pembrolizumab trial, as well asanother one for “CTT1403” for metastic castrate resistant PCa
Mark Perloe (to Everyone): 5:29 PM: Ask your MD request a peer to peer consultation. I have always been able to get necessary testing done physician to physician under appeal. Ken do any DCF18 PYL or PSMA Ga-68 scan studies should be considered? These are better scans than Axumin.
AnCan Barniskis Room (to Everyone): 5:30 PM: Also Pheonix Molecular Imaging and U. of AZ in Tucson are recruiting for LU177 trials.
Mark Perloe (to Everyone): 5:31 PM: There is a scan study at Emory for PSMA rh. not sure what the control group is for that study.
Dennis McGuire (to Everyone): 5:32 PM: is it the LU177 – 617 or LU177 – R2 ?
Jim Ward (to Everyone): 5:53 PM: Is there a thought that the lupus is related to RT and/or ADT?
Rusty (to Everyone): 5:56 PM: Gotta run, I have a backagammon challege with my wife. I will win.
Herb Geller (to Everyone): 6:00 PM: I gotta go as well. See you all next week.
Mark Perloe (to Everyone): 6:01 PM: I thought Tony had PROSTRATE cancer.
David Muslin (Private): 6:05 PM: BTW, my “T “level is staying level at 10. She checks it everytime I do blood work.
Mark Perloe (to Everyone): 6:07 PM: I was just dropped to abi 2 pills per day. Abi primarily drops DHEA and DHEAS from androstenedione.from the adrenal. My T on both ABI and triptorelin is undetectable. Some people get their shots monthly, but it should be every 4 weeks. If you go longer, you may have higher level of T.
James Barnes (to Everyone): 6:11 PM: Happy Thanksgiving Everybody!
Jim Ward (to Everyone): 6:12 PM: Gotta hop off the call, folks. Happy Thanksgiving everyone!
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.
