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!
AnCan’s paramount stated purpose is to smooth the road for those coming along behind; and the quintessential shared experience must be entering hospice. It is rare a person at this stage of treatment is both alert and motivated to share the experience with others. Yet it is hardly surprising that a man dedicated to lifelong learning, research and educating others has committed to disseminate yet more knowledge in the hope it will make theirs and their loved ones’ lives easier.
There is good reason why Professor Bill Burhans has served on our Board and Advisory Board ….. because he is committed to helping and teaching for as long as he can. Please take this rare opportunity to listen to Prof Bill sharing his hospice experience. And Bill ….. may your journey always be easy and tranquil – we love you!!
In a recent email epistle from Rick, AnCan’s founder, he referenced the story of a 58 year old man diagnosed with Stage IV prostate cancer who found the strength to mountain climb some of the highest peaks on the planet, but he had serious bouts of depression. He revealed that he was helped by a form of counseling called Meaning-Centered Psychotherapy.
In the rush to avail themselves of the latest and greatest technologies and treatments, patients often find that there is little to help them cope with the psycho-spiritual aspects of life. As its name suggests, Meaning-Centered Psychotherapy is designed to enhance meaning, spiritual well-being, and quality of life for patients with advanced cancer. It aims to increase patients’ sense of meaning and spiritual well-being by bringing awareness to their choice of attitudes, and to their ability to connect and engage with life.
Bill Burhans provided an update on his status including: hospice (volunteer vs. commercial), methadone as a viable pain med, Dilaudid (hydromorphone) for breakout pain, hospice is revocable! The Book of Joy by the Dalai Lama, constipation can cause mid-body pain and even shortness of breath, signs of end-of-life, etc.He is feeling good right now and plans to live at least six to nine months! Other topics: Dennis and Carl scheduled for MRI for back and leg pain; CBD oil; acupuncture; oligometastic vs polymetastic cancer; presumed efficacy of Zytiga after Xtandi; how do you know if symptoms are due to progression or medication?; further discussion on SSDI and Medicare, etc.; bone biopsy experience at NIH
