For those of us that are living with Chronic Myelogenous Leukemia, the journey is not only long, but complicated, as well. It is a journey that has many ups and downs, and many, many different winding roads, that often lead us, straight to a Dead-End. When we reach a Dead-End, most of us will turn that Dead-End into a U-Turn, and just keep plugging along.
It is often confusing and frustrating and, always exhausting. For those of us that are inquisitive and want to take control of our lives, and closely monitor our disease, there is a plethora of information available. We are the type of patients that need a doctor to explain things to us, and take the time to listen to, and answer, all of our questions.
With the availability of social media, we are able to lean on one another for support and news flashes, and commiserate about our latest side effects, as well as revel in our latest achievements. Just knowing that others are going through the same thing, gives us strength.
Social media is precisely what led me to this discussion. I recently posted about an increase in my Bcr-Abl, in my past few PCR tests, and about the increase in my dosage of Sprycel, as well as the frequency, in which I was to take it. I have had my dosage of Sprycel altered several times, based upon my adverse side effects, as well as my PCR results, and am currently taking 140 mg of Sprycel , six days a week.
As a CML patient, I know how very important that it is to take your medication EXACTLY as prescribed; never missing a dose. I know that missed doses add up and can cause an increase in our PolyMerase Chain Reaction test, and that neglecting to take our meds can allow our cancer to mutate and take over our bone marrow.
Because of this education, I have NEVER missed one single dose of Sprycel. Oddly enough, I had never even considered my “days-off”, as a missed dose; that is, until another CML-er brought to my attention, that over the course of a month, taking Sprycel six days a week, I, essentially was “missing” four “doses”of Sprycel. After pondering this, all night long, I shot an email, off to my doctor.
I am not the kind of person to just settle for “any” doctor; I doctor shopped and did my research. The doctor that I am currently seeing ran several Sprycel trials, before it was even approved by the FDA and is considered an expert, in treating patients, with Sprycel; for CML. He has presented his findings at the annual American Society of Hematology and is also still in research, for CML, at UCLA. This doctor is the third doctor that I have had since being diagnosed with CML, on February 8, 2011 and I hope and pray that he knows what he is doing! I have thus far felt confident in my choice.
Fortunately, my doctor is easily accessible; I have direct access to him, via either email, or cell phone; he is used to me panicking, reading and researching anything and everything that I can find, on CML, so receiving this email from me, will come as no surprise. Luckily, he never makes me feel as though I am questioning him or his expertise; we are a good team.
I told him of my concerns;
“Is taking Sprycel, six days a week, equivalent to “missing” four doses a month, and could this be why my PCR levels have increased?” “Am I, in fact, one of those patients that are “skipping” her medication; without even realizing it?”
Send; now wait for a response. I was properly freaked out and anxious.
True to form, I quickly received this reply:
“You have a good enough response that I want to approach this slowly and avoid toxicity. The effect of the higher dose may not be apparent right away and there is a fair amount of error with each test.”
“It is more complicated then calculating missed doses. More important are peak blood levels with Sprycel. The effectiveness appears to be maintained with this drug in spite of the days off as long as high peak levels are achieved.”
“The day off is to minimize adverse effects on your body, so you earn it!”
That being said, I suppose that now I will just have to wait and see. My next PCR is on January 4th, 2013; almost two years after my initial diagnosis. All things considered, I think that I am on the right road!