After finding out that the doctors want to change Logan's chemo drugs because there are new tumors growing, I did what any mother would do. I turned to Google. Sometimes I feel like I should earn an honorary doctorate for the amount of learning and research I am doing. This week's research has included brain function in the new areas of concern (I studied neuro-anatomy in college and grad school but I hardly remember it all), tumors in these areas (and their effect) and the new drugs they want him to take. In my research, I found some very interesting and possibly troubling information.
According to pretty much every medical source, Irinetocan (one of the new proposed drugs) can cause very negative effects in patients with Gilbert's syndrome. The drug interaction in these patients basically causes the body to absorb the medicine at a different rate causing worsening of side effects and at times harmful toxicity. This drug is not advised for patients with Gilbert's.
So what is Gilbert's syndrome and why does this matter? Gilbert's is a relatively benign condition that causes the body to produce more than usual levels of bilirubin. The only real effect of this condition is the person may become jaundice, particularly when over exerted, stressed, hungry, etc. Other than that, Gilbert's is completely harmless. Until you read the fine print. This is the section that I always skip over because it was never relevant. One of the ONLY times Gilbert's is a problem, is when the person is taking certain drugs. Which drug do you think every source names as it's arch nemesis? Irinetocan, of course.
Why do I care about this? Logan has not been diagnosed with Gilbert's. Why would he be? This isn't something that doctor's go looking for. Most times, this is a diagnosis that you just happen upon when in the process of other things. I should know, it happened to me. And my dad. And my mom. And possibly my siblings as well. During routine blood work, the doctors see the abnormal ratios and let you know, "hey, by the way, you have Gilbert's syndrome." No biggie. The likelihood of Logan also having Gilbert's is high.
I don't know what this means for his new course of treatment, but of course the first thing I have done is let his doctor's know of the family history of this possible complication. We will wait to see what they want to do and of course discuss this issue at length prior to even considering starting this new treatment. It may amount to nothing, but I would never forgive myself if Logan suffered more because I didn't take the time to do what was right.
This is just one more time where, as a parent, it is my job to be my child's strongest advocate. No one knows a child more than their parent, and it is our job to go that extra mile to look out for them. Do a little extra research, follow your gut.