A Rare Fellow Indeed
Battling prostate cancer for over two years, I have found that I must be the dictionary definition of a “rare” patient literally to the letter. In 2017, I was taken by surprise with a diagnosis of advanced prostate cancer with extensive bone metastasis stage 4. Numerous oncologists spoke with me concerning several courses of treatment that were available to battle this type of cancer. Along with their treatments, I was warned of many side effects that I might suffer. However, many of those side effects were “rare”.
Statistically rare and highly unlikely
The majority of the so-called “rare” side effects stated statistics reading, “less than 5% of patients will encounter this side effect”. Numerous urologists, oncologists, neurologists, cardiologists, radiologists, and palliative care professionals went out of their way to explain that many of these side effects were “highly unlikely”. Also, feeling that many are, “‘rarely’ ever witnessed at this cancer center.”
A rare biopsy experience
I was diagnosed with cancer on May 22, 2017, and not long after that diagnosis, my oncologist sent me a special urological oncologist for some biopsies of my prostate. Looking back, I really had no idea what this procedure would be like. I had to remove my clothing and put on a hospital gown. The nurse helped me take my proper position on the operating table. This became the most humiliating day of my personal life. One would never feel so vulnerable over the span of a lifetime.
As soon as the doctor inserted his finger, he exclaimed, “Can you feel that large tumor there!”
“Yes”, I replied.
“How about that big one there?” he continued to question. “This is very rare to feel tumors like this immediately. I will take 12 biopsies instead of 7.”
Starting my hormone therapy right away
This was to be my first experience with the “rare” phenomena. The doctor continued with the biopsies. I could see the concerned look on his brow. I knew I was in deep trouble concerning cancer.
“Nurse, go ahead and call his insurance and get the approval to administer a Lupron shot today,” he loudly requested. “I do not want to wait on this one. He is on Casodex and we will begin the Lupron today.”
The side effects began
When the biopsies came back ten of the twelve samples showed lots of cancer and the other two showed some cancer as well. The urological oncologist informed me that he had set up an appointment for me to start on docetaxel (Taxotere) chemotherapy infusions. However, before I could begin the infusions, I had to go through five straight days of radiation and a surgery to implant a medi-port in my right front shoulder.
As I progressed through the Taxotere infusions, I began to suffer from the usual side effects such as loss of hair, loss of weight, nausea, vomiting, diarrhea, loss of appetite, shortness of breath, and on down the line. I actually ended up losing forty-one pounds before it was all said and done.
One possible side effect of Taxotere treatments hit me strong: loss of fingernails and toenails. This was very painful along with my nails showing grooves at first and then turning black. Green pus and blood began to seep from under my nails and my fingers were swollen appearing reddish in nature. A foul smell began to escape from under my nails. Along with being very painful, this was very embarrassing.
"In rare cases" happened to me
Much later in my treatment, my oncologist introduced me to Zometa infusions. Zometa was to help strengthen my bones as the cancer had weakened my bones tremendously. As I continued the infusions, I began to notice little parts of my teeth began to fall out of my mouth. Sometimes, I would swallow the tiny bits at first not realizing what they were at the time. The further the infusions continued the bigger the sections that fell out became and when I rubbed them together in between my fingers they would disintegrate into sand-like particles.
As I began to research this side effect of Zometa of course research began “in rare cases.” Continued research revealed that less than 1 percent to 3 percent of Zometa patients suffered from this loss of teeth and jaw bone leading to a serious condition known as Osteonecrosis of the jaw.1
In closing, I have discovered through much suffering and research that I must be a “rare fellow indeed.”
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