Loss comes from many sources …not losing a loved one alone. How we, as men, grieve a loss can be complex and insufficient. I note how this author is still wrapped in deep mourning after several years … despite his own tips.
Our thanks to John Novack, our buddy at Inspire, who sent this article that appeared on the nextavenue website.
O&U, rd
Once more, our Board Chair Peter Kafka has words of wisdom in the face of progressing disease:
Many years ago, people used to bequeath their bodies after they died for medical research. So little was known about the mysterious way the human form worked and all the intricacies of the many parts. In the world of prostate cancer, it appears that more significant knowledge and understanding comes from the experience of those of us living with and managing this disease. Why wait until I am dead when I can bequeath each day of my life to the expansion of knowledge and understanding of this crazy disease that affects each man a bit differently.
The other day I was asking myself, “why am I moderating the AnCan Low & Intermediate Prostate Cancer group?” A fair question since from the onset 6 years ago my disease was anything but low or intermediate grade prostate cancer. Perhaps it is because of the plethora of treatment modalities I have utilized in these past six years.
I can speak from experience about blind biopsies, pathology reports, multi-parametric MRIs, CT, bone and PET scans, Robotic prostatectomy, urinary retention, Indwelling and self-catheterization, incontinence, ADT, including three kinds of second line anti androgens, intermittent ADT, IMRT and Proton Beam radiation, two kinds of PSMA scans, germline genetic testing, somatic genome testing and the vital importance of record keeping. I think I have left out a few.
So, when my disease progressed recently as evidenced through a PSMA scan and biopsy and my medical oncologist brought up the notion of chemo therapy I did not greet the news with an attitude of “ABC” (Anything But Chemo) but rather “Bring It On”.
By the time I am done with this disease, or it gets done with me, I will have quite a wealth of experience to share. My medical oncologist called me “an outlier” the other day for a variety of reasons. As a child of the 60’s I thought I was all done experimenting with drugs. Little did I know! (Yes, you can laugh here – I am). I think that the opportunity AnCan provides for us to share our stories and really hear each other and fully understand the concerns and issues has really helped me navigate this road these past six years.
MedPage Today Editor in Chief, Dr. Marty Makary, interviewed investigative journalist, Katherine Eban, about her recently published book, Bottle of Lies: The Inside Story of the Generic Drug Boom. For those of you who listen to our weekly videoconferences for Advanced Prostate Cancer, you will probably recall that I have expressed faith that generic drugs that have been FDA-approved as “safe and effective” are just that – safe and effective. But after having listened to this interview (Is that a Centipede I See in My Capsule??), my faith has been shaken to its foundation.
In the years since I retired from the pharma industry as a research pharmacologist, many things have changed. Like many other manufacturing operations, the generic drug industry has mostly moved offshore, mainly to India and China, and the FDA’s oversight capabilities have been seriously diminished, according to author, Katherine Eban. I have not yet read the book, but the 32 minute podcast referenced above is something you need to hear. But be forewarned, this is shocking and deeply disturbing. But there are steps you can take to ensure your generic drugs are truly safe and effective. Whenever possible, insist that your pharmacist uses generic drugs manufactured in the U.S., Canada or Europe.
Great follow up article from Marty Makary MD on Valisure, a pharmacy that tests ingedients before it uses them. (rd 3/11/20)
When in Boston mid-December for Foundation Medicine Inc’s (FMI) Patient Community Council, David Marshak and I sat down for an interview; David is FMI’s Senior Manager for Patient Engagement and a member of AnCan’s Advisory Board. FMI is gradually introducing all 5 members of the Council to their 1,500 employees; they want to encourage patient and advocate interaction to maximise FMI’s patient-centricity.
For those not familiar with FMI, it provides cancer genomic sequencing from either solid or liquid biopsies. Since 2018, FMI is a 100% subsidiary of Genentech that in turn is wholly owned by Roche. One item front and center on my radar is to initiate a repeat testing program for those who have already been sequenced once. Certain cancers, like prostate, are known to morph over time, so more than a single lifetime sequencing may be advisable.
Here’s the interview as it appeared in FMI’s online employee magazine FoundationHub earlier this month:
In December, 2018, FMI’s Patient Advocacy team launched the Patient Community Council (PCC). We have since been introducing patients and advocates on the PCC who work closely with FMI. Rick Davis is a member of our PCC and also leads the patient advocacy group AnCan. A longtime prostate cancer survivor, Rick reflects on the evolution of precision medicine, the importance of peer-to-peer support, and gives us a peek into his life in Southern Arizona. Read a full Q&A with PCC member Rick, below.
Can you talk about your diagnosis and treatment?
My own diagnosis was a total surprise. Largely because I had a doc who didn’t believe in PSA testing. Between tests, I went from a very low PSA to one that was quite high. It turned out that I had Stage III prostate cancer. I had to do a lot of treatment – two types of radiation and two years of hormone therapy. That was the bad news. The good news is, after the hormone therapy, I’ve had a durable and continuous remission, since 2010.
How did you get involved in patient advocacy?
As soon as I got my high PSA, I found a support group with a weekly meeting. I was living in Marin, California at the time. Within a year I was leading that meeting. That’s how I learned the ropes.
I started doing some advocacy at UCSF and then I got the idea to see what existed in terms of virtual online groups. Not written groups, but actual peer-to-peer conversations in real time. I found there was very little of that available. Building off of a community on Inspire (a health social networking site), we started having calls. Before long we were getting 10, 20, 30 people joining the calls, and it grew from there. We split the calls into more specific groups and added more meetings.
In 2016, our group split off and became a 501c3. We created Answer Cancer Foundation, which is now known as AnCan. We’re now running 8 prostate cancer groups a month, and we’ve got a few other groups too outside of prostate cancer.
What do the participants get out of the interactions in the virtual peer support groups?
I’d say a few things. First, we keep them up to date on technical advances in the field – whether it’s a new drug or a new test. Secondly, we help them in interacting with their medical professionals and taking charge of their treatment. If we had a catch line, it would be “you are your own best advocate.” And thirdly, we create a lot of camaraderie and peer support. Our meetings have to be peer-led. You’re talking about situations you’ve been through because that gives you credibility with everyone. They know you understand and they know you can relate.
What have been the major advances you’ve seen in precision medicine over the last few years?
I would say the major advancement in cancer treatment has been precision medicine. Precision medicine has really gotten established. I can remember 6 or 7 years ago, sitting in UCSF with a buddy of mine who was very sick, and talking about how he should get sequenced, and it seemed like a relatively new concept at the time.
What has it meant to participate in the Patient Community Council at Foundation Medicine?
I love your mission. I feel that a lot of the future of treatment will depend on germline or somatic testing. The opportunity to give you input and improve your interface with the patients is really rewarding. Because we hear from the patient side. If something’s not working, I’ll call you up and say – how can we improve this? Then you see the improvement happen. And then you don’t hear anything because it works.
Tell us about where you live
I live in Southern Arizona, 20 miles north of the Mexican border, in a small town called Tubac. My favorite part is the incredibly unique scenery. And the atmosphere and the ethos. It’s a really old community. There’s a trail near me that’s the original trail that the Spanish settlers took to trek up to San Francisco.
What are your hobbies?
I’ve been an endurance athlete for years. I do a lot of mountain biking and rowing. I’m probably the only rower south of Phoenix.
A recent book that you liked reading?
BJ Miller is a palliative care doc who’s also a triple amputee. He recently wrote a book called A Beginner’s Guide to the End. He’s a pretty amazing guy.
What’s something about you that most of your friends don’t know?
That I was a rugby hooker in high school. (Rick grew up in the UK.) It’s a position where you’re the little guy who’s right in the middle of the scrum. You just have big guys piling on top of you.
What advice do you have for someone working at FMI?
Admit to what you don’t know and ask for help. It’s a really good quality and it helps you gain respect.
Earlier this month the American Cancer Society published its annual predictions for 2020 cancer deaths and new cases; they have been doing this annually since the early 50’s. ACS made a big deal about how deaths have fallen, especially from 2016 to 2017 when they dropped by 2%. 2020, by the way, shows almost no change in aggregate mortalities, 606,880 down a tad to 606,520; diagnoses increase from 1,762,450 to 1,806,590. The press played up the 26% decrease in the ‘death rate’ over the decade – the death rate is the number of deaths per ‘000. They cited decreases in the four major cancer killers that includes prostate cancer and as well as lung, colorectal and breast. And the ACS release smoothlessly segued into moving the comparison to actual deaths ….. so lets talk actual numbers.
Prostate cancer deaths predicted by ACS for 2011 were 33,720; in 2020 they suggest 33,330; however new PC cases for PCa do fall from 240,890 to 191,930 in 2020. And before I make your head do a Triple Axel Lutz, just one more set of numbers – the nadir ( a word most living with PCa readily recognize, but for those who do not, it means the ‘low point’) for deaths came in 2016 at 26,120 and for diagnoses in 2017 with 161,360. Oh – one last thing for PCa that will become relevant in the next paragraph ….. deaths are predicted to increase 5% and diagnoses by 10% this year over last.
Why is PCa bucking the trend? Well Prostate Cancer Foundation appears offended by the recent numbers, and would you like you know it has nothing to do with their efforts ….. I am not so sure. Their blog post last week suggests many of us are misinterpreting the data and offers 7 reasons why – you can read them for yourself here. I would suggest that perhaps PCF are overlooking some very important facts and would like you to bear them in mind when you read the PCF blog piece.
First, PCF claims the ACS 2020 numbers are predictions based on a model …. TRUE, but PCF has frequently cited and relied on these numbers to argue its case in the past.
Second, PCF refers us to the death rate rather than the absolute numbers. They fail to point out that many PCa deaths are not correctly attributed on the death certificate. If AnCan has the chance to work with a family post-death, we ask them to ensure PCa is cited as the cause. This can get complicated as primary and secondary causes are recorded. It requires an epidemiologist to tell us what the PCa death rate numbers employ. In other words, none of the numbers are that reliable and we should be looking at trends not the miniscule changes in the death rate PCF cites..
Third and most significantly, nowhere does PCF address the distortions caused by the USPSTF recommendations to stop PSA testing first issued back in 2012 and clearly reflected in the ACS numbers over the past decade. While PCF is occupied excusing their responsibility – at least that is how I read their blog post – they fail to mention who was responsible. The fault should clearly be laid at USPSTF’s doorstep as a direct result of their 2012 recommendation not to PSA test. Prostate cancer is largely asymptomatic until so far advanced that it is incurable. If you don’t screen, you cannot diagnose – no wonder diagnoses declined about one-third from 2011 to 2016! Now what happens is that men are diagnosed with advanced disease – and studies have confirmed this. About 5 years after metastatic diagnosis, prostate specific death all too often occurs ….. and yup, we see that in the numbers. Btw, PCF’s highly influential voice was not that loud in 2011 and 2012.
At the time, the voice of AnCan’s principals were loud. We predicted that in years to come diagnoses would fall, and soon therafter deaths would rise. …. and that is exactly what is now reflected. Fortunately, diagnoses are once again increasing, most likely attributable to the USPSTF relaxing its recommendtion in 2016 and 2018. But we still see deaths increasing as many men are now diagnosed symptomatic with incurable, metastatic disease ….. and too many of these men are way younger than they should be. Don’t be surprised if deaths top 40,000 before long!
So one lesson to learn from this …. PSA testing is about information NOT treatment.! And if you don’t test, you don’t know. If AnCan had a dime for every man we counseled over the past decade +, diagnosed with worse disease as a result of failing to do routine annual PSA tests (myself included because my GP did not believe in PSA testing), we would be able to pay salaries ….. just sayin’!
Most of you are aware that AnCan hosts 18 virtual support groups each month. If your vision is a little blinkered, what you may not know if is that 8 of those groups are specifically dedicated to prostate cancer …. not surprisingly since that is where we proved the concept and got our start.
Our partner in the PCa groups is UsTOO with whom we have a long relationship that started well before AnCan was established. Under the leadership of Chuck Strand, who recently moved on, we saw UsTOO grow into the type of collaborative organization AnCan holds itself out to be … and we asked UsTOO to become back in 2014.
So it is with great anticpation, AnCan welcomes its new Executive Director, Beau Stubblefield. Personally I am especially excited since Beau and I share the same graduate school, what was then GSB, University of Chicago and is now The Booth Business School.
Read more below ….. good luck, Beau – may we continue to expand our relationship!
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Onward & upwards
Topics discussed …… Editor’s Highlight – Tips for your own research
Advanced man chooses Lu177/Ac 225 PSMA overseas; Bi-specifics & CAR-T; Nivolumab/Opdivo for neuroendocrine disease; more on BiSpecifics/CAR-T w. Dr. Tanya Dorff; Antigen Spreading; Chemo for peritoneal implants .. with Keytruda?; switching lead docs; brand vs generic abiraterone; responding to ultra low PSA on recurrence; tips for your own research
Chat transcript is posted on the Prostate Cancer Forum ….. click top right.
Topics considered:
ACS’ 2020 PCa Dx & death predictions; apalutamide; sequencing treatment; peritoneal biopsy experience; genomics video – Morgans and Pritchard; prednisone side effects; blood pressure issues; testicualr pain; bi-specific T-cell therapy; Car-T therapy; Lutathera for NE/small cell PCa; memory challenges; blood clots; what next after Xtandi fails.
Please visit our Prostate Cancer Forum linked at the top right of the page to see the URL’s and comments made during the meeeting.
Last week got away from me a little, and I failed to blog an article on MedPage Today by the latest additon to our Advisory Board, Howard Wolinsky.
For those of you who follow Howard’s writings, you are well aware that he appears regularly on MedPage Today writing on aspects of active surveillance for prostate cancer … a journey he has been on for the past 10 years. When Imus passed recently, Howard found himself asking questions … and finding answers – read for yourself, and feel free to comment on the MedPage Today site.
Onward & upwards …..
