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.
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.
Do I have the song by Marvin Gaye stuck in your head now? Great! It is a classic after all, even if I did a slight remix.
At AnCan, we are all about supporting you. In fact, no matter what the condition, it’s all we do. We believe that advocacy, navigation, and support should have no barriers, ever. And I’m even prouder to say we accomplish that daily. Seeing your faces at each virtual support group, or as an attendee in one of our webinars is plenty enough for us, but it is nice to be acknowledged sometimes too!
If you want to know more of our “why”, I recommend you listen to Rick’s interview with Journal of Health Design. It is a perfect road map to where we started, where we are, and where we are going.
Don’t forget, even though it is Thanksgiving week, we wouldn’t spend it with anybody but you. Check out our event calendar and let us offer the support you need this holiday season, and beyond!
Once again, thank you Ms. Cullen for the shout out, and we’ll keep doing what we do best. Giving support to all!
I love how Susan discussed the importance of Virtual Support Groups for caregivers, and how it enables the caregiver to get the support they need without having to leave their loved one. She tells the story of how the AnCan Caregiver support group formed from our Virtual Prostate Cancer Support Group, and appreciated our founder Rick Davis for not only providing support groups for prostate cancer, but recognizing the caregiver needs support too.
Susan voiced so many issues caregivers have within the healthcare system. She expressed how providers need to realize that while this may be “their millionth time”, it’s the caregivers first time in this space. Communication is so important with everyone involved in the care of an individual. She also talked about a very painful moment where she felt abandoned by the oncology team. Fellow Caregivers Virtual Support Group moderator Renata Louwers spoke of Susan’s experience:
“I think your story about feeling abandoned by the oncology group is such a powerful one and all too real. I’m glad you talked about it. I know providers certainly don’t set out to leave patients and families feeling that way, but it can often feel that way.”
We know Susan and all our other moderators will bring positive change in this area!
You’ll also hear Susan’s advice on Palliative care (plus why you should go sooner, rather than later.), communication agreements, and remembering a loved one during the holidays.
If you asked me what I love about AnCan, I’d talk about how proud I am to be part of a team that provides a lifeline of support, no matter where you are. I live in rural East Texas, and going to an in-person support group before these wild times of COVID meant multiple hour drives. And that’s only if they had a support group for my condition! The beauty of the internet means as long as we have internet and a GoToMeeting room, we can have a kitchen table conversation anywhere.
If you have never visited our “All the Faces of AnCan” page, I highly recommend you do so. We truly have the best people around, and we couldn’t do any of this without them.
Today, I want to tell you about one of those people: Advisory Board Member and Active Surveillance Prostate Cancer Moderator, Howard Wolinsky! As you’ll read in his bio, he’s been nominated TWICE for A Pulitzer, and recognized by the National Press Club, and American Bar Association. He’s co-authored “The Serpent on the Staff: The Unhealthy Politics of the American Medical Association” and the best-selling “Healthcare Online for Dummies”.
Howard has a new book out called “Contain and Eliminate“, and we’re sure you’ll fall in love with his factual, yet dynamic and exhilarating writing style. This would make an excellent edition to your winter reading, or a great holiday gift. (We recommend reading it in an AnCan Sweatshirt!)
Congratulations on what is sure to be another successful book, Howard! I can safely say that all of us at AnCan value you so much. Just keep our community in mind when the movie deal is made. I’m sure you can find a great use for Rick’s UK accent.
