Sunday, July 29, 2018

SO, you want to be in a Clinical Trial? (prt One)

I stepped into the shiny new train and eased into one of the comfy seats with lots of electrical plugs handy. I tried not to think too much about what was about to happen, because doing so brought tears. Not fearful tears, but tears of hope and tears of sadness. I was bound for Miami - 30 minutes by train - to begin a clinical trial to hopefully save my life and the lives of others diagnosed with Triple Negative Breast Cancer (TNBC).

Just the day before, ironically, I “celebrated” my 365th day cancer free. A birthday of sorts. Some women begin counting on the day of their diagnosis. Under the reasoning that we all become survivors the day we take on this fight. Others, like myself, prefer a more joyous date to memorialize - the date I was finally free of cancer. That date for me is July 24. The date of my double mastectomy. My surgeon found “residue cancer” within my tumor during surgery and removed it along with my boobs in one 4-hour operation. As a cancer patient, you hope for pCR (Pathological Complete Response) meaning there is no cancer left after chemo therapy. Approximately one-third of TNBC survivors receive pCR. I, however, was not among them. 

From the very moment of my diagnosis, I knew I wanted to be a part of finding a “cure”.  If this fucking disease was going to enter my body, I was going to fight like hell to kill it - for me and for anyone who would have the misfortune to follow me.

Finding a “cure” for cancer - all cancers - lies in the field of clinical trials. Basically, doctors and researchers think they may have discovered something, a drug, a test, a vaccine, but to find out if it helps or works they need humans to step up and offer their bodies to research. Many folks find themselves on clinical trials because nothing else it is working for them. They have metastatic cancer (stage IV) which at that point is incurable. They’ve tried all proven methods, drug, therapies, yet they continue to get sicker.  I, fortunately, am not in that position. I’m entering a clinical trial to hopefully keep my cancer from returning. Thus, helping others remain cancer free, and in doing so I’m willing to take on the risks of the unknown. Look, once you have stared down cancer, little else is as scary.

The train rolls into the bright and shiny new Miami station. This high-speed train has only been making this trip for a couple of months. I step out and make my way to the Sylvester Cancer Center, located at the University of Miami, where my clinical nurses are waiting for me.

To qualify for this clinical trial, or any clinical trial, you must pass a rigorous and extensive list of prerequisites. For this one, I qualified on my diagnosis of TNBC, having residue disease post chemo, and having ended all treatment within 365 days. I qualified on that last one because my treatment included an additional 18 weeks of “extra credit” chemo (Xeloda) because of having residue cancer. For me, my treatment ended December 31, 2017.

I also had to have blood and urine tests and somehow pass those, which I did. AND I also had to “prove” my cancer had not yet returned - or in the process, find out it had. To do this, I needed to have CT scans of my chest, abdomen, pelvis areas and a bone scan. Well, if you have been following along, you know by now of the “scan-iexty” that comes from having to chase down every little blip on a screen to prove it’s not cancer (or find out it is cancer), but instead a cyst, or other benign thing that everyone has, but you don’t know it, can’t feel it.  Three months of all that and I eventually passed that big and scary hurdle as well. Phew!

I am met in the lobby of the Center by no less than five clinical nurses, research assistants and various interns. They, along with my breast oncologist, will make up my team for the duration of the trial (more on that later). Together, we move as a pack down the narrow hallways, up an elevator, across the buildings, down an elevator to the CTU, the Clinical Trial Unit. -------------

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