High Risk/Recurrent/Advanced Prostate Cancer Virtual Group recording – 12/16/19
Topics discussed:
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Blue Flowers Bring Joy to One of Our Participants
During our family Thanksgiving we had pictures taken of the family. Debbie surprised us by having blue flowers and ribbons for each of us to represent Prostate cancer. Each member said it would go on their work desk or they would wear it. So, I thought you might like to see the picture.
Although he lives a couple of hours north, Jerry is currently in the midst of proton-beam radiation at Mayo Clinic in Phoenix for his advanced prostate cancer. Thanks to Ken Anderson, our Board Member and a long-time realtor in the Phoenix Metro market, AnCan has assisted the Pelfreys in locating affordable accommodation much closer to the facility. Jerry – we wish you & Debbie well and all the family a happy Holiday Season.
Denosumab Flops in Early Breast Cancer
A report from MedPage Today last week suggests there is no role for denosumab (Xgeva or Prolia) in early stage, high risk breast cancer that is bone mets free. Read the article here.
There are many similarities between breast and prostate cancer in their respective disease patterns. Our PCa groups often discuss the timing of bone strengthener use. A quick review of the literature reveals one meta-study that supports the use of denosumab.; however it does not analyse the results by disease stage of those studied.
This is of personal interest to the Author’s experience. I was placed on bone support treatment at the outset of 28 months hormone deprivation therapy because my bone density was borderline osteoporitic, albeit no observed bone mets – and it helped me over the course of my treatment. Since baseline bone density at start of treatment is a relevant factor, why was that not factored into the equation?
Howard Wolinsky Exposes Gadolinium in the Press
Our good AnCan friend, medical journalist Howard Wolinsky, has published an article in the magazine, Chicago Medicine investigating the controversial contrast agent gadolinium used in MRI scanning. Read it here.
This topic is often discussed in AnCan’s Active Surveillance Prostate Cancer Group. Congrats, Howard – c’mon back to our virtual groups to keep us informed!
High Risk/Recurrent/Advanced Prostate Cancer Virtual Group recording – 12/10/19
Topics discussed:
Is it OK for PSA to stabilize in the 20’s?; debulking the Primary tumor and iterating metastatic cells; repeating bicalutamide use; anti-fatigue drugs; generic abiraterone; shingles vaccines; HERO trial for relugolix; switching LHRH drugs; monotherapy anti-androgen treatment; using Technitium99 scan for darolutamide; can your MSI change over time?; pembrolizumab for PCa; your doctor’s attitude to you and your treatment; separating designated resources in your final wishes.
To view links referenced in this recording, please visit our Prostate Cancer Forum
Can Vancomycin boost the immune response to Radiation Therapy for Cancer?
Getting & Giving in The Holiday Season
Peter Kafka’s thoughts this week on generosity at this time of year:
I live on the same property as two of my young grandchildren here on Maui and it is very special being this close to them and watching them grow and mature. One of the things I wrestle with especially during what we refer to as “the holiday season” is how to change the focus from Getting to Giving. I wonder if generosity is a value that can be taught or is it a characteristic that we intrinsically have and choose to express or not. Many years ago, my own two sons taught me an important lesson about generosity that I have never forgotten.
We were living in Brooklyn; NY and my sons were perhaps 6 and 8 years old. They wanted to go out to lunch on their own at a neighborhood Chinese restaurant a block or two away. I gave them a $20 bill and my wife and I watched them disappear around the corner from our 4th story window. About 25 minutes later they returned, all smiles about this big adventure. As I listened to their story, I asked my sons if there was any change left from the $20 bill, knowing that the lunch special was about $3.50. They replied that they left the remainder for a tip, stating that the waitress was “so nice” to them.
I was about to explain to them how to go about calculating a tip by percentages when I bit my lip and shut up. Who was I to stifle their natural spirit of generosity? Generosity is something that comes from the heart and not the calculator. I trust that my sons, and their children live by this maxim still, but I can’t control that. All I know is that something shifted in me that day in terms of generosity.
Not a day goes by this time of year when my mailbox is not stuffed with donation requests from a wide variety of social, health and environmental non-profit organizations trying to tap into my spirit of generosity. My desk is full of greeting cards, address labels, calendars and such. Things that I don’t need but have a hard time just trashing. I get it, the timing and the need. And I do support a number of these organizations throughout the year.
We at AnCan.org have not to date taken this approach of frequently soliciting donations. We just continue on with our effective model of providing weekly live On Line/ telephone support for men and women dealing with difficult medical and emotional issues. We provide a forum where people can connect with others and form significant friendships and support networks for their particular situation. To date, none of our moderators and staff are paid. Our service is a gift of our passionate hearts. Others have helped us along the way and we are compelled to pass it on.
I know that many of you have found the means within your budgets to help us at AnCan continue this work and expand into other avenues of service. Thank you! We value your generous participation.
Navigating Prostate Cancer: Diagnosis Through Survivorship – interview with Rick Davis
Navigating Prostate Cancer: Diagnosis Through Survivorship
Through my attendance at HealtheVoices 2019, I had the good fortune to meet Andrew Schorr, the founder of Patient Power. In their own words…… Patient Power® is devoted to supporting cancer patients, care partners and other loved ones through education and advocacy – to get the right treatment at the right time working with the right healthcare team.
A couple of months later I was approached to do an interview with their Prostate Cancer Community Manager, Andrea Hutton that I just learned was published on their PCa page in October. You can watch for yourself by clicking on this link ; hopefully for our veterans, there won’t be too much new. And from my standpoint, it’s a great visual lesson in how to improve my interviewing technique!!
Dr. BJ Miller on NPR’s Fresh Air
One of AnCan’s favorite doctors, who we are privileged to name on our Advisory Board, is palliative care specialist, BJ Miller. I have had the wonderful fortune to work with BJ for 10 years or so, and know first hand how he has provided lifesaving support to a number of our participants treated at UCSF, both physically and mentally!
BJ is an extraordinary physician with an equally extraordinary story. He is a triple amputee – prior to med school, and if you listen to his interview today with Terry Gross on NPR’s Fresh Air you will learn how that career decision came about.
What Terry failed to mention is that BJ’s Ted Talk has very nearly 10 million views since first being posted in 2015 – now that’s remarkable in itself! He has just published a new book with Shoshana Berger, A Beginner’s Guide To The End that I am currently reading.and recommend.
New SARCOIDOSIS virtual group debuts today!
Ancan is delighted to announce a new virtual group for the rare disease, sarcoidosis. Sarcoidosis effects between 150,000 and 200,000 in the USA, with an estimated 1.2 million individuals effected worldwide. Leaning on Wikipedia:
Sarcoidosis is a disease involving abnormal collections of inflammatory cells that form lumps known as granulomas.The disease usually begins in the lungs, skin, or lymph nodes. Less commonly affected are the eyes, liver, heart, and brain. Any organ, however, can be affected. The signs and symptoms depend on the organ involved. Often, none, or only mild, symptoms are seen. When it affects the lungs, wheezing, coughing, shortness of breath, or chest pain may occur. https://en.wikipedia.org/wiki/Sarcoidosis
AnCan is partnering with Sarcoidosis Online Support Group, a collaborative of several sarcoidosis support organizations from around the US led by Frank Rivera, a renown sarcoidosis patient advocate. This is AnCan’s first rare disease virtual group and fulfills the vision to make peer support easier for people living with rare and chronic conditions where others living with your disease are hard to find.
1st Tuesday of each month at 7 pm Eastern
3rd Thursday of each month at 7 pm Eastern
Joining Instructions https://www.ancan.org/joining-instructions/
For more information, please visit our Sacoidosis Virtual Group web page.