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.
Should you monitor your testosterone level ….. ? The group consider and discuss. (Tx for all b-day wishes! rd)
Topics Discussed
GU med onc places Mx man on LHRH alone???; Intermittent Hormone Therapy considerations; monitoring Testosterone levels; using different labs; trigger finger and HT; Bipolar Androgen Therapy; finding 2nd opinions remotely; when does a symptom warrant reporting; PSMA scanning tests; dealing with Brain Fog
Chat Log
Herb Geller (to Everyone): 6:15 PM: But yes, ACTH might be a better indicator.
Mark Perloe (to Everyone): 6:20 PM: I’m on Zytiga and prednisone. Dr. Turner drew a cortisol level and I got a call that my cortisone was low, but prednisone minimally affects blood cortisol level. I would think that ACTH would be a better marker. BP is normal, and I’m feeling ok. We dropped Zytiga to 500 mg/day with food. Turns out a recent study suggested lower DHEAS from adrenal with 500 vs 1000mg the standard dose. I appreciated cutting the cost in half as well.
John I (to Everyone): 6:29 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/amir-mortazavi
Herb Geller (to Everyone): 6:39 PM: abiraterone – trade name ZYTIGA
Jake Hannam (to Everyone): 6:39 PM: Zytiga
Mark Perloe (to Everyone): 6:42 PM: Also on Zytiga+prednisone.
Frank Fabish (to Everyone): 6:52 PM: thank you all
AnCan – rick (to Frank Fabish): 6:54 PM: Pleasure Frank ….. keep coming back
Frank Fabish (to Everyone): 6:55 PM: intend to. i’m pleased with this first meeting
John I (to Everyone): 7:20 PM: https://ancan.org/bipolar-androgen-therapy-bat-sam-denmeade-md/
Herb Geller (to Everyone): 7:21 PM: https://cdmrp.army.mil/pcrp/research_highlights/20denmeade_highlight.aspx
Ken A (to Everyone): 7:24 PM: MDA stated BAT is not a good idea and they have had no success.
Mark Perloe (to Everyone): 7:48 PM: PSMA-rh study at Emory
John I (to Everyone): 7:57 PM: Here’s the org I just mentioned: http://dbsaalliance.org/
Editor’s Choice: Tough one this week ….. very useful discussion on insurance issues, and we also learn some intersting things about Xgeva (…. see Chat), not to mention monotherapy AR blockers (rd)
Topics Discussed
PCF Scientific Retreat review; what to do when insuracne says ‘No’; managing abiraterone side effects; bone density and hormone therapy … is Xgeva a lifetime drug?; chemo may send PSA up .. THEN down!; do T levels matter with monotherapy androgen blockers?; Phase 1 trial experience with a glucocorticoid blocker; what type of SBRT to choose for gland ablation; does switching from an LHRH antagonist to agonist casue a flare?
rick (to Everyone): 5:10 PM: Prolia …. same as Xgeva Ancan –
rick (to Everyone): 5:12 PM: denosumab ….
Len Sierra (to Everyone): 5:16 PM: Patients need to be advised of the increased risk of bone loss and vertebral fracture when therapy is stopped. If denosumab needs to be stopped, it should be replaced by an alternative osteoporosis medication to help prevent rapid bone loss and risk of fractures (Symonds CMAJ April 2018).Oct 23, 2018
Jake Hannam (to Everyone): 5:18 PM: osteo-necrosis of the jaw (ONJ) is the real danger
John I (to Everyone): 5:19 PM: thanks for the research Len & Jake
Jim Ward (to Everyone): 5:58 PM: I’ve got a question re going to 1-month Lupron shot due to the shortage after consistently doing 3-month shots
Jim Ward (to Everyone): 6:07 PM: Thanks for the comments, guys. Sorry about my mic; don’t know what’s going on there
Ken A (to Everyone): 6:07 PM: whats your t -level Jim
