Apologies … no transcript this week!
Post chemotherapy; good example of expert and local med onc cooperation; germline BRCA+ diagnosis; facial numbness; Intermittent Hormone Therapy; can nocturia explain fatigue?; treatment choice for Gleason 4+5; increasing testosterone on hormone therapy; IGRT with implanted guides vs IMRT; comparing scans
Happy Independence Day!
In this line of work, one of the non-pecuniary benefits is meeting remarkable people … like Jamie Aten Ph.D who I blogged about yesterday. Before we go any further, and if you are wondering what the heck ‘non-pecuniary’ means it goes back to my labor economics classes at Chicago with Sam Peltzman. ‘Pecuniary’ means related to money … and patient advocates don’t see much of that. Ironically, a significant for-profit corporate player in the field of patient advocacy whose stated mission is to help advocates find compensation, asked me yesterday to assist them with an online educational program they are compiling. When I asked if it was compensated, their response was no, however I should be satisfied with building my network and my resume from the ensuing publicity ….. OPM, I guess .. ‘other people’s money!’ But I digress ….
Back to remarkable people, especially Dr. B.J.Miller who kindly serves on our Advisory Board and boasts a TED Talk with more than 9 million views at last count! BJ is a palliative care doc at UCSF where I have had the privilege of working with him since around 2012 – I love the guy! For several men I have introduced to BJ, he has been their lifeline. You have to know BJ was a national class varsity rower (should I declare a bias here?) who was recruited by Princeton; as a sophomore, he endured a life changing injury that cost him three limbs! BJ has the remarkable knack of connecting to people challenged with life threatening disease.
BJ Miller and Shoshana Berger are publishing a book mid-July, A Beginner’s Guide to the End, and last Sunday the New York Times printed an opinion piece by them, Don’t Tell Me When I’m Going To Die …. you’ll be relieved when I say that’s the required reading rather than the book, Folks! BJ and Shoshana refer us to a very simple form called a ‘Prognosis Declaration’ developed by a man called Steve Scheier when he was caregiving his terminally ill wife. It puts YOU in charge of what you want your doc to tell you about your survival prognosis …. and if you give it to your medical team IN WRITING, they will need to abide by it. What a simple concept, but perhaps it can change how you live your life!
And my thanks to Len for blogging ‘Here’s Your Prognosis …’ otherwise I would not have noticed BJ’s opinion piece.
Truly onward & upwards!
Our friend, Dr. Jamie Aten, is quite a remarkable gent. A psychology professor in the field of disaster relief at Wheaton College, IL, he is also lives with Stage 4 colorectal cancer; we encourage you to read his article published in the Philadelphia Inquirer. Some of you may recall, Jamie joined us for a Speaking Freely virtual session earlier this year on the vocabulary we use around cancer; you can listen to it here. He’ll be back on July 29 to join a panel on ‘The Language of Cancer’ that is open to all.
Earlier today, Jamie published another piece in Cure Today that we want to bring to your attention. It relates an experience many of you are too familiar with …. how ‘friends’ disappear when you face cancer, and other crises, then you have to evaluate whether it is worth the effort to re-engage. Know the feeling …. read it here.
Our thanks to Jamie for giving AnCan a shout out on the national stage ….. join us on July 29 to hear more from Dr. Aten!
Dr. Michael Glode is a GU medical oncologist at the University of Colorado and he pens a weekly (or so) blog that he calls Prost8Blog. This week he shared with us his traditional answer to new patients who ask, “Doc, how much time do I have left?” I’d love to see this blog become required reading for all medical oncologists, many of whom give very poor answers to this important question. Click here to read this wise blog posting of Dr. Glode: https://prost8blog.com/2019/06/26/heres-your-prognosis/
TOPICS
Treatment choice with hi-risk diagnosis; Axumin experience in practice; joint pain from HT; plan for recurrent PCa; AFT-19 trial – abiraterone/ apalutamide; incontinence from treatment; adding 2nd line HT after 12 months neo-adjuvant ADT; PSMA vs Axumin scans; Lytic vs Blastic lesions; switching docs @ MSKCC
Note: Be sure to click on the CLICK icon when you see it appear above in Len’s short introduction!! This will take you to our GoToMeeting page where you can listen to the whole session or search for specific parts of the video via the transcript search function.
I just read this New York Times obituary on the life of Gabriele Anderson Grunewald, who passed away at age 32 after battling several cancers for the past 10 years. She was an elite runner who never stopped training to qualify for the Olympics, even while undergoing multiple surgeries and chemotherapy regimens. While reading her story, I realized that she was the perfect embodiment of the spirit that Stuart Scott wrote about as he approached the end of his long struggle with cancer: “When you die, it does not mean that you lose to cancer. “You beat cancer by how you live, why you live, and in the manner in which you live.” Gabriele beat cancer. I hope her story inspires you to live more fully and to beat cancer, either literally or metaphorically.
Susan Lahaie, who co-moderates our Advanced Cancer Caregivers Virtual Group, has first hand experience advocating for medical-aid-in-dying legislation in Delaware. Her husband ,Ron Silverio, GRHS, passed in Jan 2018 from prostate cancer, and without the option of death-with-dignity that they had campaigned for during his 5 year illness.
Susan recorded her experience that was published in Friday’s Delaware State News; and even more powerful is Ron’s end-of-life testimonial recorded for Compassion & Choice shortly before he died.
AnCan stands behind those seeking greater end of life options.
Advocacy is right there in our tag line! Most of you know how AnCan provides navigation and support … but advocacy, well that may just be a little more vague. This past week a great example presented itself that helps illustrate how we are making our mark on cancer and healthcare nationally.
Many of you have already signed up for the The Metastatic Prostate Cancer Project that Dr. Eli Van Allen is leading out of the Broad Institute at MIT. It is one of several patient-participation projects under the Count-Me-In umbrella. If you have not yet sent in a sample, it’s easy to do – just click here to find out how to participate. And AnCan is happy to connect you to one of our many participants who have already contributed their data. A few readers may have signed up for one of the other patient-participation projects …. like breast cancer or one of the other 3 you can learn about by visiting Count-Me-In’s website. Forgive me for using ‘prostate’ as our example … you’ll see why if you read on.
I mention this because last week Eli pushed out an excellent 8′ video on YouTube showing how we can play with the data base MPCP have created to understand and analyse the records inputted to date. Currently, it only reflects 19 men, however the MPCP 2nd Quarter Report tells us there are a lot more in the works waiting to be entered. After watching the instructional video, it may strike some, as it did me, that MPCP could make a video to respond to the frequently asked question – how can the MPCP help me personally? In fact, how can each Count Me In project make its research more patient-centric. I reached out to Eli who was very receptive. As a result, Len, Professor Bill and yours truly will be putting our heads together with one of Count-Me-In’s founders, Dr. Corrie Painter, next month – so watch this space!
Regular participants of Ancan’s High Risk-Recurrent-Advanced virtual online support group and The Reluctant Brotherhood’s Inner Conversations, may know that I am agoraphobic and claustrophobic. I’m not ashamed to admit it and even find it cathartic at times to talk about it. I’ve lived with this ‘condition’ since I was in my late twenties but it seldom bothers me. It’s usually easy to avoid claustrophobic spaces. I’m perfectly happy to avoid traveling beyond my ‘comfort range’ of a few miles from my home. It bothers some people far more than it does me but that’s their problem, not mine.
I did try psychotherapy years ago until my psychiatrist dropped me like a used condom when I ran out of money. I’ve learned that the term ‘medical care’ – whether psychiatric or medical – is, far too often, a contradiction in terms. I also tried meditation but didn’t find it helpful. Some do and that’s great. To each his own, as the saying goes. I prefer prayer.
Why am I telling you this? So I can segue into a discussion of scans and anxiety; what some people have dubbed ‘scanxiety’. Remember, I’m talking about me here and no one else. But, perhaps, others will find it informative.
Since I was diagnosed with prostate cancer in 2010 (metastatic since 2012), I’ve had a number of tests — as have so many other of my fellow travelers. In my case, beyond the obligatory biopsies, I’ve endured a technetium bone scan, an ‘open’ MRI, several X-rays, several CT scans, a nuclear stress test, and two PET/CT scans. The first was an FDG PET/CT in 2012. That’s how I found out my cancer had metastasized to my bones (Stage 4). FDG is ‘old’ technology in the PET/CT world, still FDA-approved for many cancers but no longer for prostate cancer. There are newer and better radiopharmaceuticals for prostate cancer. As of this date, Axumin (fluciclovine) is the only one approved by the FDA for imaging prostate cancer. There are better ones coming down the pike, especially for PSA levels below 2.0, but for now, Axumin is the only one Medicare and most insurance carriers will pay for. The only way to get the others is via clinical trials.
I had my second PET/CT – Axumin this time – last Thursday. I’ll get the results when I see my oncologist on Monday. Did I tell you I’m claustrophobic and agoraphobic? That’s a rhetorical question because I know I did. Anyway I fretted and worried for weeks about the 12-mile trip to the clinic and, of course, the scan itself. The only restrictions are no vigorous exercise for 24-hours before the scan and no food or drink (except sips of water for medications) for 4-hours. I did miss my coffee!
I want to tell you it wasn’t too bad. I took a prescription Xanax before I got in the car (my wife drove) and another before I got in the ‘tube’. The Axumin arrived right on time, I got my injection, and was zipped right into the scanner. They let my wife sit behind me once the CT part of the scan was complete. The CT does involve radiation so no one is allowed in the room for that portion of it. It was comforting to have her there with me although I couldn’t see her. If the technician talked to me I didn’t hear her. PET/CT is a bit noisy but nowhere near as noisy as MRI with all its banging and clacking. The ‘tube’ is a bit confining but not as much as the MRI, bone scan, or nuclear stress tests were for me. The nice thing about PET/CT is that you can see light at both ends. If I weren’t blind as a bat without my glasses, I might have been able to see more. I kept my eyes closed most of the time but did open them to peek once in a while. I found that praying and saying the Lord’s Prayer was helpful – as were the Xanax and my wife’s presence. Probably the worst part was staying still for thirty minutes or so and keeping my arms above my head. I had a strap to hang on to but my shoulder ached like the dickens the whole time. By the time I got out, I was a little sore but quickly got over it. As a final, much appreciated, touch, they gave me a doggie bag with a drink and a few snacks. The whole process, including waiting for the CD, took less than 45 minutes.
It wasn’t fun but it was doable. If I can do it and live through it, anyone can!
Jake
My thoughts these last few days have been about the tremendous advances in the entire world of prostate cancer over the past several years. Advances in various diagnostic tools and treatment modalities seems to have made a significant impact on the lives of men. Prostate cancer for many men has become a treatable and manageable disease that is no longer a scary death sentence hanging over our heads. This is especially true for men with low and intermediate grade disease and even for men like myself with more advanced disease there are many lights shining on what was once a dark and gloomy future.
I realize that I may well live for quite a few more years, and even with advanced prostate cancer I might die of some other unrelated cause. So, what should I spend my time doing as I approach another one of those milestone markers in life that we call “birthdays”? For the foreseeable future I will continue to help men and their partners navigate through the constantly changing and complex world of treatment decisions for prostate cancer. I will try and stay as up to date with the most current changes in this field as I can so that I can continue to provide relevant support to others. But what else should I do? Yes, I will continue with an exercise regimen and try to eat a healthy diet which I know is a benefit for my health. But life is far from over for me and I suspect most of you.
I believe that keeping alive an active sense of curiosity, an interest in hearing other people’s stories instead of repeating our own, nurturing whatever artistic nature dwells in us, be it painting, photography, writing or music. Keeping up an interest in the world around us and finding small ways that we can make a difference in the lives of those who might not be as fortunate as ourselves. Keeping our hobbies alive and daring to develop new ones. Even reigniting a bit of romance in our lives and those we share this journey with. All of these endeavors are just as important to me as checking my monthly PSA numbers or taking my daily pill regimen.
Let us remember that we are Living beings. Yes, we have a commonality of a prostate cancer diagnosis. But we have a great deal of living ahead of us. Keeping our eye on this rather than the downward cycle will do more for our health than perhaps anything else. Let’s make this the year of a truly Happy Birthday!
Together, our collective knowledge and understanding is powerful.