Lynne Smith is a CML survivor, LLS blogger and former journalist who is thankful for every post-diagnosis day. This blog is the third in a series.
If you want to get technical, I have cancer. At least I think I do. I was diagnosed eight years ago with chronic myeloid leukemia (CML) and while there are no longer any signs of disease in my bone marrow, this is a condition that never really goes away. The cancer-causing enzymes keep firing and my daily Gleevec pills continue pummeling them into submission.
I like to think of myself as a cancer survivor, but dare I be so cocky? Not only do I not want to tempt fate, but it feels a bit like I’m staking claim to a territory I’m not fully entitled to. After all, I didn’t go through bouts of chemotherapy and extensive hospital visits, lose my hair, and give up months (or years) of my life. All I did was start taking a pill once a day and master the art of living in a suspended state of disbelief.
Since my diagnosis in 2006, I’ve slowly moved out of the “Oh my God!” phase and settled into a mindset more along the lines of Doris Day’s: “Que Sera Sera.” The world does look a little scarier from where I stand but I try to accept the fact that there’s not a whole lot I can do about it. I tell myself every day that things could be a whole lot worse.
Part 1 of a guest blog by a chronic myelogenous leukemia (CML) survivor who was diagnosed at age 18.
I arrived at college in September, barely legal, but fully ready to live out the Hollywood higher education stereotype. I was fighting a cold but didn’t let that stop me from attending every party I could. The revelry lasted until October, when the “cold” was diagnosed as chronic myelogenous leukemia (CML).
I went to the university health center on suspicions of mono, and the next thing I knew I was on the oncology floor of a Boston hospital. My mother flew in from Texas just in time for my diagnosis. Several doctors sat me down, gave me the news, and then looked at me expectantly. I tried to seem unemotional and think of questions to ask, but really just wanted to be left alone.
A constant stream of visitors was a blessing, but also meant that I had to fake acceptance and understanding to make others comfortable. It took me several weeks to comprehend that my version of the ideal college experience—fraternity parties, boyfriends, spring break trips—would not be happening.
As a clinical trials specialist for The Leukemia & Lymphoma Society, I guide blood cancer patients and their families through the process of determining whether a clinical trial might be right for them. I try to clarify any misconceptions people have about what is involved so they will be in a much better place to make a decision. This blog addresses some of the most common misunderstandings.
Considering a clinical trial for treatment of a blood cancer? Make sure you know the facts.
I Might Get a Placebo
A placebo is a substance that looks the same as the one used in the clinical trial but has no active ingredients. Most people think of a placebo as a ‘sugar pill.’ Placebos are almost never used in cancer clinical trials. In the rare instance a trial involves a placebo, you will be told before you agree to participate.
Patients enrolling in Phase I or Phase II trials all receive the experimental treatment. In Phase 3 trials, doctors are trying to learn if the experimental treatment is better than the proven or ‘standard of care’ treatment. In order to find out, half the participants will be given the standard of care treatment and the other half will be given the experimental treatment. The combined results of one group are then compared to the results of the other. Neither participants nor their doctors can choose which treatment they will receive.