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.
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/
As reported in the Nov. 5, 2020 issue of JAMA Oncology, as many as half of all liquid biopsy-identified DDR (DNA Damage Response) mutations may be false positives. This may lead to patients being treated inappropriately with PARP inhibitors such as Olaparib or Rucaparib.
The cause of these false positives is what are known as CHIP variants. CHIP is an acronym for Clonal Hematopoiesis of Indeterminate Potential. These are clonal mutations of Stem cells of blood forming organs, primarily the bone marrow. This is a mostly harmless phenomenon that occurs with increasing frequency as we age. Some of these CHIP variants include the same mutations found in advanced and metastatic prostate cancer patients, but the CHIP variants are not related to prostate cancer at all.
The most common DDR CHIP variant the authors identified was ATM, followed by BRCA2 and CHEK2. The authors speculate that these false ATM mutations may account for the low response rates of prostate cancer patients treated with Olaparib.
Most commercial testing labs use only plasma samples for liquid biopsies called cfDNA testing, i.e., cell-free DNA. The authors found that CHIP interference variants could be distinguished from prostate cancer variants using a paired whole-blood control along with the plasma specimen. Sorry, I know this is kinda technical. But the bottom line is this: If you get a liquid biopsy and they are sequencing cfDNA to detect prostate cancer mutations, ask them if they use a whole-blood control along with the plasma specimen.
AnCan is keeping the informational content going to make sure we fully support the needs of our incredible community. We had the absolute pleasure of having Natalie Ledesma, MS RD(Oncology Dietitian, Patient and Family Cancer Support Center, UCSF Helen Diller Family Comprehensive Cancer Center) speak to our Active Surveillance Prostate Cancer Group about Nutrition and AS. We’re sure you will enjoy Natalie as much as we did!
Watch this excellent presentation here:
To view the slides for this presentation, please click here.
To view another nutrition and prostate cancer webinar we have with Greta Macaire, RD, please click 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.
An article Howard has been developing for some time, The Swinging Pendulum of PSA Screening, was finally published this morning. It included not just thorough research (as always!) but interviews with significant names …. and I do NOT include myself in that crew. One of those names was USPSTF Chair, Dr. Alex Krist who agreed with many of us “that (prostate cancer) overtreatment could have been prevented if doctors used the PSA information more judiciously.”
Howard’s article goes on to quote Dr. Krist ….
“Back in 2012, the data actually showed that that’s not what was being done.In fact, 90% of men with low-grade prostate cancers were getting surgery and radiation,” said Krist. “And we know today that that is overtreatment, and the treatment patterns changed between 2012 and 2018 [when USPSTF again reviewed its PSA guidelines].”
What breaks my own heart are the number of men now diagnosed so late that their disease is already metastatic resulting from not being PSA tested and its D Grade awarded by the USPSTF … and many of these men are in their 40’s and 50’s. Just last week we buried a 55 yr old man with two young kids diagnosed de novo metastatic in 2016. He had a family history … a reasonably intelligent GP should have known that and tested his PSA starting at 40 or 45. And he should have been tested for an inherited mutation and never was … but that’s a whole different blog post!
Remember, PSA TESTING IS ABOUT INFORMATION NOT TREATMENT! What you and your doctor do with that information is between you …and that is why you have to be your own best advocate. That said, without information, it’s tough to advocate!
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
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!
