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.
"Because it is" is never a good enough answer... You need to know "Why - it is" "Why this dose"! Your oncologist should gladly answer ALL your questions, and in a case like this, no question is inappropriate, or "silly"... It is your life you are talking about, if not your Dr., there should at least be a Nurse Practitioner to answer ALL your questions...ReplyDelete
good points Michelle and I think solid questions that should be considered.......without the MD feeling as if you are challenging him/her.In a perfect world.....? NO-you keep reading and questioning-it is your body~ReplyDelete
Get second opinions. try contacting Dr. Mauro through the NCMLS (nationalcmlsociety.org) "ask specialists" option. He helped develop this TKI and is the best along side Druker to help answer your dosage questions. I do know though that the faster you hit remission the better. The longer leukemia is unsuccessfully treated or not treated at all then the more resistent it can become. They seem to prefer starting with a higher dose first and then going down from there as you can rather than the other way around. You may very well be able to be on a smaller dose with great response... hopefully it gets figured out soon!ReplyDelete
Thanks, Kayla, will do!And I have changed doctors and am currently on 100 mg.ReplyDelete
Sorry I kinda forget this is not being written as it happens =). I don't know the timeline vs where you are now with everythingReplyDelete
Well, Kayla I am actually catching up pretty quickly, I think I am a few weeks out!ReplyDelete
Like you, I was prescribed the full dose by an oncologist with no experience with this drug. It worked well, but the side effects were pretty bad, and after two years my pleural cavity (chest) and abdomen were full of fluid from the Sprycel. I had plenty of symptoms, but this doctor only checked my ankles for swelling and listened to my chest. I was finding it had to breath from the fluid under my diaphragm, had a swollen abdomen, and even had some swelling of the penis if I sat upright for long! The fluid was actually leaking down into it from the pressure above. Long story short, I ended up having to switch to Tasigna, which has its own serious side effects. If you are responding well, the 100Mg dose should work as well, with fewer side effects, just a little more slowly. You need a new doctor. He or she doesn't have to be an expert in this drug, just a GOOD DOCTOR.ReplyDelete
Well, I can attest to the 100 mg working more slowly! I was cruising along at a great speed and now I am pretty much stagnant! I am once again back on 140 mg 6 days a week!ReplyDelete
Maybe I shouldn't have pushed so hard to decrease my dosage!
Live and learn, I suppose!
Keeping my fingers crossed,
I just stumbled upon your blog and so happy I did! I was just diagnosed with CML this summer. I'm a 26 year old woman who weighs barely 100 pounds and I'm having the same issues with my medication, Gleevec. I'm taking the same dosage a 300 pound man would take. It seems it's standard to prescribe the same dose no matter what your weight, etc. I have been having some pretty bad side effects and feel that if my doctor would just cut my dosage in half, it would still be effective and I would have a better quality of life. Your first paragraph sums up exactly how I feel about my doctor. This is routine for him, my concerns are concerns for him because he hears them all the time, but I don't! I'm actually in the process of finding a new doctor. Anways, I can't wait to read more! Check out my blog: confessionsofasinglemomm.blogspot.com I have documented my journey as well!ReplyDelete
Best of luck,
Thanks so much for stopping by! I am sorry to hear that you are a CML sister, but I hope that you may find a bit of helpful info here, I am excited to read your blog as well; do you know how we link back an forth?
What state do you live in? I really do like my doctor...now, and I am very glad that I started my journey on Sprycel as it appears to have fewer side effects than Gleevec and Tasigna; my doctor also says that it is the quickest path to remission.
Anyway, love to hear from you again,
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