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
I also have prostate cancer and had radiation (which didn’t get all of it). Now I’m on Lupron and hoping for the best.
I am very sympathetic to your plight and just wanted you to know that you will be in my morning prayers. Hopefully the drug will be approved and you will see your wishes fulfilled.
Good luck and God Bless.
My name is Donna Allen-Murray. I am married to a wonderful man named Larry. Larry was just diagnosed with Prostate Cancer on Tuesday Jan 15th. I don’t think that I will ever foreget that day. We are in the beginning phases of learning and gathering information about the treatment for prostate Cancer. We will be having our consultation on next Tuesday, Jan 28th. I appreciate your testimony. Although we don’t know a lot about the treatments at this time, we are with you on your fight to have this drug approved. You and your family will be in our prayers. Keep Larry and myself in your prayers.
My husband was diagnosed with kidney cancer and has also lost close relatives to cancer (father and sister). We know exactly how you and your family are feeling. I work in the medical field. But when the doctor told us our options, I almost fell out of the chair. There had to be a better way…and there is.
We immediately went to a raw food diet full of greens and fresh veggies. Also 8 fresh carrot juices per day. He feels fantastic. There are no more symptoms nor pain.
We believe that the human body can heal itself if you give it the proper nutrients to do so. There are thousands of testimonies of such.
Feel free to contact me if you would like further information.
My Name is Martha Salzsieder. My husband, Dean shares a very similar story to yours. He has been fighting this dreadful disease since 2002.He has HRPC now. 2nd round of Taxotere has failed. Have you found any place to purchase the Satraplatin..Europe, Russia, Japan??We will go anywhere to get it. He is declining fast. We have been married 37 years and I want him around to do the same type things you want to do with your lovely wife. I’m constantly searching, but I’m feel I’m losing the battle just as he is feeling now. Any info you have would be extremely appreciated.
We will keep you in our prayers and keep praying for FDA to get this approved quickly.
May God be with you and your family.
With Much Regard,
Yes, I am 48+ and any more months i get i will be happy and Satraplatin is hopefully approved soon, so we enjoy a few more days with our families and on earth
I am 75 year old retired airline Captain..I was first diagnoissed with prostate cancer in 1997.. I had radiation and have been running from this disease
now for 12-years…PSA goes up and I have been using
“Cell Advance” ( Herbal Dietary Supplement )and it seems to bring the PSA down(.075 6-mos ago) The current check 5/13/09 = 14.
Scheduled for a bone scan and dread it as I have had a dull ache in lower back and groin now for about a year…
My thoughts, and prayers are for you and your beautiful family…All things are possible with God..
And my prayers to you and your family.