I thought that I would share the testimony I delivered at the recent FDA hearing on Satraplatin:
My name is Joel T. Nowak. I am here today as a consumer and as a representative of the advocacy and educational group Malecare.
Neither I, nor any member of my family have any financial interest nor received any support from the applicant.
In the interest of fair disclosure, I do wish to add to the record that my primary oncologist is Dr. Daniel Petrylak, who is one of the researchers involved in these clinical trials.
Unfortunately, I am very familiar with metastatic disease and its effects on the patients, their families and society.
The 300 family synagogue to which I belong has, in the past six months alone, mourned the cancer related deaths of five men my age — all husbands and fathers, productive in their careers and active in the community.
In the past two years, I have lost my mother to lung cancer, my father-in-law to colon cancer, my sister-in-law to breast cancer and my best friend to kidney cancer.
Although I am only 56 years old, I am a three-time cancer survivor. I have been diagnosed and treated for thyroid, prostate and kidney cancer.
However, today I am here to discuss my experience with advanced prostate cancer. I was initially diagnosed with Prostate Cancer in August of 2001 and had a Laparoscopic Prostatectomy October. Then, in December of 2005, I had a reoccurrence. As everyone here today knows, recurrent prostates cancer is not a curable disease, but it can become a treatable disease if we are allowed to have the drugs we so desperately need.
Those of us who suffer with advanced prostate cancer have already gone through a mill of barbaric treatments. We have had our prostates removed or radiated, often leaving us with varying degrees of incontinence and impotence.
Despite the primary treatment, 30 percent of us will have a recurrence and develop advanced prostate cancer.
According to the National Cancer Institute, the expected mortality rate for Advanced Prostate Cancer is over 50% in 36 months from diagnosis.
This signals the beginning of our clock’s final countdown, the countdown ending in our ultimate death.
Herein lies my personal predicament. I want ever so much to see my younger son, Max, graduate from college and go on to law school. I want to attend my older son, Dov’s, Broadway debut. I want to dance someday at their weddings and to meet my future grandchildren. I do not want my wife, Wendy, to be a widow in her 50s. We have been married for over 33 years and I know that she wishes to continue to have a husband to share her life; I want to be able to hold her and talk about our dreams for the future.
So what can I do?
As with all men in my situation, we try desperately to buy even a little more time. We try salvage surgery or radiation. We start on a hormone blockade that that turns us into physical and chemical eunuchs. We lose the little sexual ability that we may have managed to cobble together after primary treatment and trade it for hot flashes, loss of muscle mass and bone density, weight gain, peripheral neuropathy, mood swings, and a host of other ailments.
Despite the suffering that we endure, our cancer continues to march on and our clock continues to unwind.
Now, our only option to survive a little longer is chemotherapy. We introduce into our bodies Taxotere, which will further decimate the already degraded quality of life that we experience. Our goal is simply to push off and delay our inevitable death, to slow down that clock. We want desperately to have more time with our families, more time to be productive citizens and loving family members.
Satraplatin will not cure my disease; but it does offer one more way to make advanced prostate cancer into a treatable disease. It offers my family and me a way to slow down this too fast ticking clock.
For those of you who are blessedly healthy, this seeming minimal life extension probably doesn’t sound like a lot of time, maybe not even enough time to be worth the trouble. However, for my family and me this is not just a few days, or a few weeks, it is a whole lifetime.
Satraplatin will also delay my progression to pain. None of us wants to feel pain and none of us should have pain when it is avoidable.
I still may not live long enough to see my older son successful in theater or my younger son fulfill his dream of graduating from law school; and I will likely never know my grandchildren. But I may have additional precious time to hold my wife and laugh with my children.
Therefore, I wish to urge this committee to recommend that the FDA approve the pending application and allow Satraplatin to be added to the arsenal of approved drugs for advanced prostate cancer.
I appreciate this opportunity to present my position, and thank you for your time and attention.
Joel T. Nowak MA, MSW