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)
SEVEN CAN BE YOUR LUCKY / UNLUCKY NUMBER
The New Year began with a message on my phone informing me of the passing of a friend. Never good news, but for those of us in the Prostate Cancer community it is always a poignant reminder of just how deadly this disease can be. My thoughts always go to; “what more could I have done?”.
When I first met this man a couple of years ago, he had just been diagnosed as a Gleason 7 (4+3). He had always been a staunch believer in natural and alternative medicine. Now faced with a diagnosis of cancer he found his way through mutual friends to me. I encouraged him to get more information, a second opinion and a 3T-Mp-MRI and a follow up with a local radiation oncologist. He kind of followed these suggestions reluctantly and in his own way, but didn’t really heed the warnings and decided that he would seek alternative, non-medical treatments.
I kept in touch with this person over the past two years, checking in from time to time. I last saw him about two months ago and he was struggling because his disease had progressed substantially, yet he still adamantly refused medical intervention and wanted to treat it his own way. I am always really challenged in such a situation. I do my best to steer men to the best appropriate options for diagnosis and treatment, but I can’t make someone follow my direction. Men can be stubborn! I am sure I don’t need to tell you this.
Another good friend of mine who is also a Gleason 7 (4+3) took my advice and got a second opinion from Dr. Jonathan Epstein at John’s Hopkins. He also was trying to “cure” himself with an alternative regimen of hot baths, enemas and natural supplements. However, he called Dr. Epstein’s office to go over the pathology results and it happened that Dr. Epstein himself answered the telephone. My friend went over all his alternative treatment protocols on the phone. Dr. Epstein listened attentively and then said, “That’s all good, and that protocol won’t hurt. But you have to remember that your disease can kill you without medical intervention”. For this friend the message got through and he went after his prostate cancer with a radiation protocol. He is now doing just fine.
Many of you are fortunate to be diagnosed with a GL-7 ( 4+3 or 3+4) or even better a GL-6. But the fact that you are on this mailing list or checking out this website is indicative that you are wary and not taking anything for granted. Prostate cancer kills some 30,000 of us each year in the US and not all of these men are diagnosed as Gleason 8,9 or 10.
Never turn your back on this disease. Don’t be a stubborn man and convince yourself that “I know best”. I am not saying that medical intervention will cure your disease or does not come without costs, including quality of life. But early diagnosis, staying vigilant, making smart lifestyle changes and choices and seeking top quality medical expertise can all lead to a longer life in many circumstances.
So, when you roll the dice and the number comes up 7, pay attention!
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!
O&U ….