Dasatinib (Sprycel); My Dosage Dilemma

While I know that many people just take their doctor’s recommendation as law; I do not.  My entire life I have been witness to many medical blunders; misdiagnoses, over medicated, wrongly medicated and even the wrong person operated on. I am not saying that all or even most Dr.’s are incompetent; I am just stating that they are human. As humans, we all are capable of make mistakes or becoming a bit lackadaisical in our jobs or everyday life. I mean let’s face it; an oncologist regularly deals with cancer patients. That is his/her profession and is what he/she does all day long. It could easily become routine for a Dr. that has treated hundreds of patients for the same disease, day after day, year after year.  It is something that he understands and is accustomed to; it is familiar to him. As a newly diagnosed patient, learning that we have cancer is not only a shock, but a frightening change in our lives. It is delving into the unknown with uncertainty and fear. It is our life and world that is crashing down around us. It is personal to us and to our friends and families and not at all routine.

Anyway, I have been prescribed 140mg of Dasatinib (Sprycel) once a day. I have questioned my doctor about the dosage over and over again, to his annoyance I am sure, as the information that I have been able to find regarding Dasatinib clearly states that a person in blast crisis starting dosage is 140 mg; I have been told that I am NOT in blast crisis. The standard dosage of a CML patient not in blast crisis is 100 mg per day.

My other argument is; do I really need that high of a dose of this medication? I believe, and these are only my beliefs, that a person should be medicated by weight, not by standard protocol. I know that my body is very drug sensitive; a little goes a very long way. I am concerned about the amount of medication taken over a long period of time; long being the rest of my life. I know that this particular drug has been around approximately six years. So, it stands to reason that they do not know the “really” long term side effects of this drug. It is my intention to be around for a VERY long time, and I really do not want to be told 10 years down the road that the meds I have been taking to keep me alive, have inadvertently destroyed my liver, heart, kidneys, brain, etc. Yes, part of my paranoia stems from the Cipro poisoning that I have been suffering through for the past two years. I also know that it often isn’t a disease that kills people, but the cure. Many people die from complications stemming from their cure.

My current theory is that I should take enough medication, based upon my weight (120lbs.) and metabolism, to put my leukemia into remission and to keep it there. Since my blood will be tested weekly, we would quickly know whether or not that can be achieved with 70 mg of Dasatinib instead of 100 mg. If it can, then that is the dosage I should ingest.  If 70 mg does not achieve the desired results, then I could easily increase the dosage. If we start at 100 mg, we will never know if 70 mg would have done the trick or not. If I am taking a lesser amount of the drug, then ten years down the road, my body has processed much less of it; and my pocketbook would still be around, since the cost of the drug would also be less than its’ current price of $8,513 per month. Yes, that is WITH my insurance! Without my insurance it is $15, 836 per month.

Now, back to being the patient and referring to how I spoke about doctors becoming lackadaisical. I understand that it is very important to take Sprycel exactly how it is prescribed. For me that is once a day at the same time of day. No antacid and no grapefruit. I have already set the alarm on my phone to go off at the same time every day. As tired and forgetful as I am, I really need to get one of those pill thingies to put one pill per day in each section, as even though I have the alarm set, I could easily walk into the kitchen and get distracted and forget whether or not I have taken the pill. It is my goal to not become lackadaisical in my responsibility, as the patient, of taking my pill every day, on time, even when I begin to feel better. I have read that missing as few as three doses per month can have a detrimental effect on the desired outcome of the drug and that continuing this trend can lead to a progression of the disease.

So, in a perfect world the doctor would treat each and every patient as an individual and every patient would follow their doctor’s orders. Kinda’ contradictory, huh? I guess what I really want is a good answer to why the dosage of my medication is the prescribed dosage, not just “Because, it is.”  So, for now, in protest, I am taking 140 mg of Dasatanib aka Sprycel, and will continue to search for dosage answers.