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)
Thanks to our particpant, Steve Nordstrom, for bringing this interview to our attention on an issue that effects many of AnCan members … both men & women.
Kudos to Peter Kafka, our Board Chair, and our partner, Pacific Cancer Foundation , featured in this week-end’s article about AnCan! Enough from me – the article says it all!
Listen to Jake Hannam outline the groups we run at AnCan.
And visit our YouTube Channel, if you want to listen to any recorded groups ….. for prostate cancer, MS, or sarcoidosis as well as excellent webinars on various topics like diet, exercise and genome sequencing.
Whilst trying to clear my e-mail backlog before year-end, I came across this article from NYU Langone Health Center with the self-explanatory title, “Breast Cancer Screening Found Effective in Men at High Risk for the Disease.”.
In deference to MBCC and our male breast cancer group, that is currently on holiday hiatus and restarts in January, I am posting it. Men with pertinent risk factors like a BRCA mutation, family history, or Ashkenazi ancestry should take particular note.
