"Share Your Story" Spotlight, A Journey Through Stage IV Cancer

The following story is entitled "My Treatment", written by Connie Tucker.

How does the journey begin? Imagine you are a luxury liner heading to New York. Everything is smooth sailing, a few rough patches here and there, but mostly uneventful. Out of the blue, you hit an iceberg. The iceberg is cancer. You start filling up with water. You know you are going to sink. The question is, how long can you stay afloat? Can the crew patch the holes? How long will the patches hold? And what will happen to your passengers? They were depending on you to get them to New York.

My cancer is Stage IV spindle cell carcinoma, as rare as a snowflake in July.

I had gone to an orthopedist because I had a backache that wouldn’t quit. I was at the point where I could hardly walk to the bathroom. After a few months of fruitless physical therapy, he ordered an MRI, which is when I hit the iceberg. I had a large cancerous tumor in my spine, two in my left lung, and a few other spots here and there. After my diagnosis, which took a while due to my cancer’s rarity, I spent the next few months in a chemo-induced haze, shocked and stunned. First, I had radiation on the tumor in my spine, which improved my walking. The chemo treatments ordered by my first captain (Gemzar and Taxotere) were showing results, producing tumor shrinkage, but I lost my hair and my appetite. I was even still working, managing to stay afloat. But after eight rounds of almost weekly chemo, the chemo’s effects wore off. Another type of chemo was recommended; meanwhile, I was being told to get my affairs in order. We were taking on water fast.
One of my passengers, my husband, refused to let the ship sink. We went to a new captain, more aggressive than the last, who ordered genetic testing on my tumors. Nothing came of that. Undaunted, he tried a different line of chemo (Cisplatin and Taxol). Nothing came of that. Then, looming on the horizon after a disappointing set of scans came a lifeboat in the form of an immunotherapy clinical trial of an anti-PD-1 drug, MK 3475.

It’s a Phase 1 trial, which means I am a human lab rat.

At the recent ASCO (American Society of Clinical Oncologists) conference in June, anti-PD-1 drugs were generating major buzz, because they are working- even on Stage IV melanoma, kidney cancer, and now NSCLC (non-small cell lung cancer). In layman’s terms, they work by enabling the immune system by releasing a brake on one’s T-cells, engaging them to attack the tumors. I’ve been on this trial for two months now. I won’t really know how MK 3475 is working until after my scans, but I feel markedly better, almost like my old, pre-iceberg self. My cough is gone! Best of all, I have no side effects- no nausea, no burning veins, no metal mouth, and my hair is growing back!

UPDATE: After my first 3-month scans, my tumors have shrunk by 70%! I feel great and have decided to start working on other parts of my body, like lowering my cholesterol. This is truly a miracle.

Perhaps this old ship will right herself after all.

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