Thursday, August 18, 2016

In the beginning ...

During the first week of April, 2016, I was diagnosed with terminal stage four lung cancer. Here is the story of what led up to that event ...

For several months before Christmas, 2015, I had felt unwell. I knew that something was wrong, but I could not quite put my finger on it. At times there were aches and pains that came for several days and then went away. Pain in my lower right back. I drank cranberry juice, thinking it was a kidney infection. Pain in my mid-chest that was very severe when I tried to lie down or sit back up again. Severe pain and stiffness in my right shoulder joint that prevented me from raising my right arm above my head.

Just before Christmas, I felt a golf ball sized lump in my left buttock. I had slipped and fallen on some ice some days before, and the emergency room doctor assumed from this that it was a soft tissue hematoma. Except, it did not go away. Instead, it got larger, eventually reaching the size of a baseball.

Then one day, I woke up with a small lump on my left temple. It literally seemed to come on overnight. One day it was not there, the next, there it was. An ultrasound scan of this lesion was inconclusive and an appointment was arranged to have it surgically removed and biopsied. Another lump appeared on the left side of my mid-back.

The episodes of pain became more severe and persistent. All along I assumed that it was just the aches and pains of growing old. I was sixty-six years old, after all. And then, during the last week of March, 2016, I developed a severe pain on the left side of the back of my neck. It was incredibly painful to lie down or sit up. Those movements became almost impossible to accomplish. On the fifth day of this new pain, a new lump appeared on my upper left arm and I determined to go to the hospital emergency room the next day.

On the morning of March 31, 2016, I presented myself at the emergency room of the Dr. Georges-L. Dumont University Hospital Centre at 10:00 o'clock in the morning. After I described my symptoms, a CT scan of my neck was done. At 3:00 o'clock in the afternoon, the results of the scan came back. The scan showed that my C2 vertebrae was badly eroded and had actually fractured. I was told that I had a broken neck, placed in a neck brace, and admitted to hospital.

After five days of various CT scans, biopsies, and other tests, it was determined that I had advanced stage four lung cancer. I had well over twenty lesions, including the originating lesion on my lower right lung, and a lesion on my kidneys. All of the superficial lumps that I had were cancerous. There was cancer in my right shoulder joint, and in my mid-spinal column, as well. A lymph gland was surgically removed, and a tissue sample was sent away to an advanced cancer laboratory in Ottawa.

I was released from hospital and basically told to go home and die. I had a life expectancy of maybe sixteen weeks at best. At this time, my medical care was handed over to the Dr. Léon-Richard Oncology Centre which is affiliated with the Dumont Hospital. 

There, I was first seen by a radio-oncologist, who recommended a series of five radiation treatments be done immediately over the next five days, focusing directly on my C2 vertebrae. The hope was to stop further deterioration of the bone, and perhaps promote the bone to heal. After six weeks, another CT scan was done of my neck. It showed that the situation had actually worsened.

At this point, my C2 vertebrae was only three millimeters thick at its narrowest point. My orthopedic surgeon said that it was virtually certain that I would need to have my top three vertebrae fused together in order to stabilize the situation. If the C2 vertebrae broke completely, I would become a quadriplegic, at best. At worst, I could stop breathing and die. It was decided that I should keep wearing the neck brace, and to wait six weeks and do another CT scan and review the situation at that time.

Six weeks later, a new CT scan revealed that the fracture had completely healed and the vertebrae bone had regenerated! The orthopedic surgeon said that he had not expected the vertebrae to heal. He had never seen this type of fracture heal itself before. He immediately sent me for a series of five x-rays taken with my neck in various positions. These x-rays revealed that the vertebrae was indeed very stable, and I was given permission to gradually stop wearing the neck brace. This was miraculous to me!

After the radiation treatments, my care was given over to an oncologist. I was given an initial round of standard chemotherapy, to which I responded well. In the meantime, before the second round of chemotherapy was scheduled, the results of my biopsy came back from the advanced cancer lab in Ottawa. It was revealed that I have a rare, aggressive late-stage non-small cell lung cancer. One percent of persons with this specific cancer have a gene mutation that allows for a targeted drug therapy. I have that gene mutation.

Xalkori (Crizotinib) is an anti-cancer drug acting as an ALK (Anaplastic Lymphoma Kinase) and ROS1 (C-ROS Oncogene 1) inhibitor, approved for treatment of some non-small cell lung carcinoma (NSCLC) in the United States and some other countries, including Canada, and is currently undergoing clinical trials testing its safety and efficacy in anaplastic large cell lymphoma, neuroblastoma, and other advanced solid tumours.

After twelve weeks of taking Xalkori, new CT scans show that most of my cancerous lesions have disappeared, and the few that remain have been reduced in size by ninety-five percent. Quite remarkable!

There has been some nausea and vomiting, but the most problematic side effect has been dysgeusia, which is a very unpleasant sense of taste which causes a loss of appetite. Since I am responded extremely well to this drug, it was decided to continue with it, but only taking it every other day, in order to diminish the unpleasant side effects caused by the dysgeusia.

Since I was first diagnosed, I have lost a total of forty-five pounds. Currently, my appetite is good and I am gaining weight. I now have a much increased life expectancy. I recently acquired a bicycle, which I plan to use to exercise and regain some muscle mass and stamina. This blog is the ongoing story of that bicycle, me, and where we go from here.



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