Knowledge is power. That is the first rule I learned in my war on prostate cancer. Nobody, not your doctor, not the insurance companies, not the pharmaceutical companies, will put your interests first in this fight. I was fortunate to learn this lesson early on. I was educated by those who had come before me. One man in particular, Zufus, is a master at thinking outside the box. His ideology in treatment selection might not be right for everyone but they work for him. I was fortunate in my battle. The first line of defense in stage four prostate cancer, A.D.T. , continued to be effective for five full years. I spent the bulk of this time arming myself with information. I spent many hours at the computer researching current available treatments as well as clinical trials. It was a very frustrating time in my life. Many of the available treatments were not effective for long periods of time. There was however, hope on the horizon. A new biotech company, Dendreon, was conducting A phase 3 clinical trial on a revolutionary medication that harnessed a person's own immune system to combat prostate cancer. Sipuleucel-t or Provenge, was the first treatment of it's kind. It was a true cancer vaccine. Although Provenge was not a cure, it was hope to those who had very little hope at all. I knew early on that when hormone therapy eventually failed the next treatment I would pursue would be Provenge.
Counting a one year vacation from treatment, hormone therapy lasted a full five years. Midway through year number six it became obvious that hormones were no longer doing the job. I was facing a rapidly rising P.S.A. and I was beginning to feel sick again. It was during an oncology visit that my doctor concurred a change in treatment was necessary. He offered five or six different treatment options for me to weigh in on. The last one he mentioned was Provenge.
When Provenge first received approval by the F.D.A. I was elated. My elation soon turned to discouragement when the product label stated that lung metastasis was excluded. I would not be able to receive Provenge. However, by the time I needed Provenge the exclusion had been lifted by the C.M.S.
I didn't need to think about it. I had five years to think about it. I believed in my heart that for a treatment plan to have any kind of long term success it would have to begin with Provenge. Blood tests, CT scans, and bone scans, were ordered to see if I was a good candidate for the treatment. It came back as a mixed review. In her own words, my case manager stated that I was "the perfect candidate for Provenge" My doctor saw things differently. The CT scan had revealed a small lesion in my right lung. Citing the product label excluding lung metastasis he would not prescribe me the medication. Mandy and I were devastated. In our hearts and minds Provenge was hope. We appealed and won the first battle based on the C.M.S. Decision to drop the exclusion for lung metastasis. It was however, to be a short lived victory. There was at this time, an editorial written by a stock analyst, in the journal of the National Cancer Institute circulating throughout the medical community. The article, authored by the world renowned scientist "Marie Hubor" accused Dendreon of comparing the medication to a faulty placebo. It didn't matter that the author of the article was not qualified to write the document. It didn't matter that her hypothesis had been debunked as bad science. My doctor cited this article to deny me the medication. I will never forget the words he said over the phone that day. "Mr. Seals there is new scientific evidence that proves beyond a shadow of a doubt that this treatment will not work for you because you are too young. It may in fact make your situation worse"
My PSA was doubling every six weeks. Mandy and I were scared. How much worse could it get?
We would not be deterred. Provenge was the right choice. Provenge was the only choice. We made the decision to set the course and to not be moved from it. We began the appeals process while simultaneously searching for another way to receive the medication. We found a doctor in Las Vegas Nevada who would prescribe me the medication. We contacted the patient assistance program through Dendreon in order to receive the medication as soon as possible once we had exhausted the appeals process. We made an appointment to see the doctor in Nevada in early April 2012. Two days prior to leaving for Nevada we received a call from my case manager at kaiser Permanente. The Washington state insurance commissioner had ruled in our favor. In his decision he stated that Kaiser Permanente had made the decision not to prescribe on nothing more than speculation. I was to receive the medication at the earliest possible date.
We kept our appointment with the doctor in Nevada. He has been invaluable in our fight against this disease.
A lot of people have already heard this story and perhaps to some it is old news. It is my belief that everybody needs to hear the story. I could've rolled over like an abused dog and urinated all over myself. I could've been a good submissive little patient and done precisely what my doctor said but my doctor was wrong. My doctor was wrong when he told me I only had a year to live. My doctor was wrong when he told me that hormone therapy would only last a couple years. My doctor was wrong when he told me that Provenge would not work for me. The fact is Provenge is still working for me.
There are some places where I cannot speak my mind. This is my blog and by the very facet of the possessive is not one of those places. Provenge is expensive. Provenge therapy $97,000. Lucopherysis and infusions $35,000 ballpark, office visits scans and blood work to qualify, $10,000 In my humble opinion this was the real reason kaiser denied Provenge to me........ Fourteen side effect free, progression free months..... Priceless!!!.
14 months after receiving Provenge it was time to find another treatment. Perhaps it was unnecessary. PSA is not a good indicator as to whether or not Provenge is working. Nevertheless my PSA was rising and it was difficult for me to sit back and watch it rise. I began Zytiga 10 months ago. My PSA has fallen from 29 to an undetectable level. I am in remission. Nobody knows how long this remission will last. We hope it will be for a long time. It gives me great comfort to know that there are new cutting edge medications on the horizon. It gives me peace knowing that my own immune system has been empowered and is still hard at work beating the crap out of cancer.
The title of this post is Stand Your Ground. It really is an appropriate title.
We as cancer patients must look out for our own best interests. Nobody else will do it for us. Bringing cancer medication to market is expensive. This makes cancer medications very expensive. I hope I never lived to see the day where the cost of the medication will outweigh the value placed on the human life. We are advocates. We are the frontline. We are band of brothers fighting a war that is inclusive of all aspects of this disease. Stand your ground. Make sure that your doctors are doing what is best for you. Our friends, our wives and families, our grandchildren, they all need us. Stand your ground because in the words of a very good friend, "We Will beat this crap!!" Todd
