| Print this pageby Jules Reichel
I am the Secretary of the URF Board and a patient of Dr. Catalona. He performed my radical prostatectomy in September 1997. I’ve written in QUEST for over six years. I study, write, counsel, and lecture, but I am not a doctor.
At Dr. Catalona's insistence, I had a complicated biopsy of my bladder neck and bladder during August, 2006. It was performed at a teaching hospital in Syracuse, NY near where I live. I was sure that the test was unneeded but I was wrong.
I had been attending the Urology Grand Rounds meetings at the hospital for a long time as a pseudo-resident. When I was wheeled into surgery, the residents decided to make a party out of it, since they too thought it was not serious. When I was awakened after surgery, there were no smiles to be seen. I was told that I had metastatic bladder cancer – a very serious life-threatening disease.
Dr. Catalona knew that I had a married daughter who lives in the Boston area and he connected me to the right doctors at Dana Farber Cancer Institute (DFCI). I didn’t understand that the endlessly changing treatments and problems would require that we live in the Boston area during the last 14 months and for some time into the future.
At Dana Farber, I took a very difficult medical-entry test called an endorectal MRI to find out the stage of the disease (how far the disease had spread). I went with my wife to meet with the oncologist for the report.
My results were the worst case: spread to the pelvic area, the bladder, massively to the liver, to the lungs, and to the bones.
I want to make clear that my past prostate cancer is thought to be unrelated to my current bladder cancer. It is not thought to be a recurrence of prostate cancer.
The doctor printed out the survival curves for this disease and told me the grim news that I had less than a 20% chance of survival through the end of 2006. I found that devastating news hard to accept. Four months to live is not much. I challenged the reliability of the curves and the underlying mathematics; however, devastating news from a reliable expert is not easy to hear.
I soon learned that chemotherapy was the only real option for such widely systemic disease and two dominant lines of chemo treatment were recommended, although many others are in use. The two views that the oncologist was considering were one based on platinum-family drugs and the other based on taxane-family drugs.
We began with a very long series of treatments with the platinum-family drugs. The primary drugs were cisplatin, Gemzar, and an angiogenisis drug called Avastin.
Angiogenisis is the breaking of the blood supply to the tumor rather than the direct killing of the tumor cells.
Dr. Judah Folkman, the inventor, lives in Boston and has converted almost everyone in this region to this approach. Other cancer centers don't seem convinced at all. I never became refractory (resistant) to this protocol but, in time, I had to stop taking the drugs despite the very large pull back of the cancer (about 90%) because the bones in my jaw were fracturing and slivers of bone were projecting through my gums. And I was so weak that I had to be taken to the doctor in a wheel chair. My body was unable to endure any more of the drugs. I was then put on a drug "holiday" (no drugs); however, after about 2-months, a PET scan showed that I had a large recurrence of disease.
Then, I began treatment using the taxane-family of drugs. The drugs in this protocol are mitoxantrone, taxol, and Avastin (the DFCI favorite). Only Avastin is an angiogenesis drug, and it is used in both the platinum and taxane protocols.
At each treatment, I asked the oncologist how much data exists on results from using these drugs. In each case, the answer was that I was part of the earliest group of patients or maybe, if you count rat studies, I was part of a larger group of all living things. But I don't count rat studies.
Nevertheless, I proceeded.
This protocol had many more side effects and I am now almost bald – as one minor observation. I've also lost over 100 pounds since this drug adventure began over a year ago. The picture of me with this article is a little deceptive.
Why am I proceeding? What choice does the patient really have? Are we to do nothing and wait for death?
In my personal view, our only real option is to work with the best doctors we can find who have lots of clinical and research knowledge, and are capable of carrying out an experimental program with patients.
That's what I chose to do. And my instructions to my oncologist were to carry out the plan even to the day of my death – if that had to happen. We have that agreement.
The doctor had come to my bedside in the hospital at 11PM after he finished his day's work. Those words about how I wanted to be treated were very difficult for me to say. I hope that no reader of this story needs to face such a choice.
The plan seems reasonable and moral to me, but pain and woe have been my lot since I made my choice. I have been through a huge amount of medical treatment in the last 14 months and much of it has been very unpleasant. However the 14-months far exceeds the 4-month prognosis for my survival and things are looking even more hopeful. If one were to believe insurance company printouts of cost, which I don't believe, then in the absence of insurance I would have spent over $2 million dollars by now.
Even beyond the issue of choosing effective drugs, the doctors and I faced the problem of having proper biomarkers to monitor how well things were going during the period between the CT/MRI scans taken every two months.
A biomarker is usually a protein whose change indicates the disease but is not itself a disease. For example, PSA is a biomarker for prostate cancer.
Recently, two biomarkers were selected for my metastatic bladder cancer: CA125, and CEA. It was rapidly observed that with the new drug protocol, the CA125 had dropped from about three times too high, into the normal range. In addition, the MRI scan of the liver reported: "There has been significant regression of disease. Some of the previously noted lesions are no longer visible." And for the bladder, the report stated: "Overall significant regression of disease with decrease in size of large mass at the bladder apex with no clear residual mass seen on the current study."
These results typified the whole report and elicited the shortest medical evaluation yet from my doctor, "Damn good report!" They were the first signs of convincing progress.
Feedback
Feedback is encouraged. Contact Dr. Catalona at www.drcatalona.com (see "contact us"), or send me an e-mail at jules105@aol.com. All 17 prior articles are available on the above Website (Either enter my name in the search window or click on Quest Articles and then under my picture).