Yet again, our Moderator Peter Kafka offers wise words from his group meting reminder that many of you will find true! Thank you Peter …..
All of us in the AnCan community are volunteers. At this juncture none of us are paid to moderate our calls or assist others in navigation or advocacy with their cancer journey. This might change at some point as finances permit and circumstances evolve, but for now we remain no less passionate or committed to our calling. There are of course benefits to the work we do, and for me one of the great benefits I have come to know is new friendships. The men and women I have come to know through this work in these past five years have made a great impact on my life.
Friendship is an interesting human cultural phenomenon. It is often noted that women tend to form closer and longer lasting friendships than men. Men can become “lone wolves” in society, particularly as we age and our boyhood friendships fall away. It takes work and commitment to initiate and maintain friendships as we grow older and our life purposes change and evolve.
The notion that new and significant friendships can form in the autumnal days of our lives is a foreign concept to most men. The idea that there are men who are committed to being of help to perfect strangers who are trying to find their way through the weeds of prostate cancer decisions can no doubt seem suspicious. “What’s the catch?” Simply put, there is no catch! For some unknown reason this disease seems to have propelled quite a few of us into a place where we just want to help others as best we can.
I always look forward to these on-line/telephone AnCan meetings. Even though most of us are separated by many miles and may never meet each other in person, strong bonds are sometimes formed and significant friendships result. Maybe I should end this with a string of clichés; We are not ships passing in the night – but rather all in the same boat and pulling for each other.
We at AnCan through our online/telephone weekly support meetings and advocacy work hard as peers to provide whatever support and backup as we can in your journey with prostate cancer. But we don’t claim to have all the answers. We encourage you to share your experiences. We learn from each other. Keep connected, information is power! We are always there for you.
Brain mets radiation; Intermittent Hormone Therapy – is there a PSA bench mark to resume?; pancreatic cyst; darolutamide/Nubeqa; post-BAT treatment path; Lu177 ; T4 remission is possible!; Debulking the primary; abi after enz fails – what next?
At ASCO 2019, Dr. Oliver Sartor gave a presentation on the final PROCEED registry data which tracked Overall Survival (OS) of African American (AA) and Caucasian (CAU) men with mCRPC after receiving Provenge (sipuleucel-T).
The median overall survival (OS) for AA patients was 35.2 months and the median OS for CAU patients was 25.8 months. And it appears that the lower your PSA is at the time of initiation of Provenge therapy, the longer will be the OS time. For the lowest PSA quartile, which were the men with a PSA of less than 8 ng/ml, the median OS for AA men was 54.3 months and for CAU men, the OS was 37.4 months. So why do I say that Provenge is looking better than ever? Because the “registry trial” for Provenge, the one which prompted the FDA to approve Provenge in 2010, the median OS was calculated to be just 4.1 months. The bottom line here is that you should try to get Provenge as soon as you learn you are metastatic castrate resistant (mCRPC).
WOW – what an exciting meeting …. visits from our friend Jerry Deans, Vice-Chair of co-sponsor,UsTOO, who is considering an exciting new drug trial. Then we had Prof Bill with a live update on his hospice, Joe Boardman who has scaled several high peaks while on ADT (see earlier Blog post), a new younger man and of course all our regulars.No wonder we ran over by 20 minutes!!
Here’s the summary:
Exciting new drug trial Regeneron5678; Provenge timing; Xtandi fails for younger man; Prof Bill updates us hospice Tx; Mountaineer Joe Boardman on life w/o T; docs won’t approve bone strengthener; dropping Zytiga from adverse psych effects; don’t panic when miniscule PSA heads north; using medical marijuana; coming soon – Dr. Larry Fong!
AnCan endorses the CancerCare workshops! Here is a list of presentations scheduled through the balance of 2019; click on any presentation for more information and joining instructions.
Leading Experts Discuss Important Cancer Topics
Make sure you’ve signed up for our upcoming Connect Education Workshops! These free workshops provide the latest cancer information straight from leading experts, via phone or online. At the end of the workshop, you’ll have a chance to ask the experts your own questions.
Recurrent disease – in the kidney??; ADT can make you suicidal – listen up!; when to expand treatment if hormone resistance is evident; experience with Xtandi/ enzalutamide; fast PSA rises with small lymphatic metastasis – wassup??; scans to order when PCa recurs
Moderator and Board Chair Peter Kafka’s message in his Low/Intermediate Prostate Cancer virtual group reminder this week, is very applicable to ALL PCa patients .,.. and maybe other conditions too; this same topic came up recently in the context of MS!
Speaking of MS, we are kicking off our new MS virtual group on Tuesday, Sept 24 … please make anyone you know dealing with this condition aware. Like all our meetings, the meeting is free and drop-in. Sign up by visiting www.ancan.org.
Kudos, Peter ….
As I sit down and write this evening, I find myself at the annual PCRI (Prostate Cancer Research Institute) conference in Los Angeles. It has been a very full two days thus far and another day coming up tomorrow to conclude. This is no doubt the largest patient oriented prostate cancer conference to be found anywhere and quite a remarkable and impressive assembly of patients, care givers and medical professionals. I am understandably overwhelmed.
I think the old phrase, “leave no stone unturned” has taken on new meaning for me this weekend. I am not sure I fully grasped just how complex the disease of prostate cancer is and how many facets there are to the development, diagnosis, and treatment there are to this condition. I have been dealing with my own situation for some 6 years or so as well as trying to help many other men find their way through the maze which prostate cancer can be sometimes. But this weekend it became clearer to me that we have outgrown all the old treatment modalities and understandings of this disease. I know that there are still lone urologists out there who believe that they can diagnose, treat and guide men through any aspect of prostate cancer. And perhaps you have relied on such a medical professional or still do. But I believe that the model of one man – one doctor is way out of date. So much has changed and is changing in the world of prostate cancer in the past few years that no one doctor can possibly keep up to date with all the advancements. It takes a team; it takes collective knowledge.
Enjoy listening to this AnCan virtual session where we discussed:
Zytiga + LHRH; lower dose LHRH; RT urinary side effects; Nubeqa after monotherapy Erleada; joint & muscle pain issues; does fasting effect disease progression?; back related issues; IHT discussion; Book of Joy; Antonarakis referral @ Hopkins; SBRT for spot radiation
Early recurrence after RP; importance of a GU medical oncologist on your team; treating PCa brain mets; PSA pattern post completion of radiation and hormone therapy; heart palpitations; Zytiga co-pays; do scans change treatment plans with metastatic PCa?; Metformin; Prof Bill update.
Zytiga “flare”; back pain with Zytiga after chemo and Neulasta; gene mutations; CBD and anecdotal benefit; how long will I live?!?; should you defer Xtandi after Provenge?; scans after Provenge; side effects with radiation therapy; how soon after diagnosis do you need more scans?; PCRI conference 6 – 8 September; positive hip biopsy and treatment plans; Medicare now covers proton beam; VCTV.edu app
Many thanks to Len and Jake for covering me and getting the recording posted whilst (Brit. usage) I am swanning it here in the UK!
