I used to think that treatments for terminal diseases should be fast tracked much more quickly than they usually are because, “what have you got to loose”.  I actually still feel that way to a large extent, but some of the difficulty is becoming apparent.

When deciding whether or not to go on the brand new treatment for ALS called Radicava, my main worry was that the daily infusions of IV fluid would be such a hassle and make me depressed by making me feel like a sick person.  That, it turns out, is not much of a concern at all. There was a little truth to that as first because the IV lines in my arm worked very poorly, threatening to ruin my day. That, however, completely changed now that I have had a Port surgically installed.  I do it myself at home and it has just become an easy part of my routine.

Now for the unforeseen problem with an inadequately tested drug.  Doubt and Indecision. Doubt and Indecision is having a negative impact on my quality of life.  It is making me focus on myself and my disease to an unhappy and unhelpful extent. I have been doing the best I can with just trying to enjoy life and not worry about things you can’t do anything about.    The problem now is that after 17 weeks of treatment and almost five infusion cycles, my anecdotal feeling that it might be doing more harm than good, but can I be sure, the answer is no. My decline seems to hasten while taking the infusions but I can’t be absolutely sure about that.  I am very willing to be deferential to the statistics and science of a medication if it has been tried and tested. I am capable of not second guessing if I trust in the science.

Because of my unproven, but growing trepidation of how it’s working, I have started to go back and look at the evidence for this medication.  The developers state that they don’t know how it works. It is all based on a study in Japan with just 69 patients on the drug for 24 weeks.  Not only is the patient study size tiny, but when you look closely at the graph of results, the picture is not one hundred percent clear.  I would not be questioning anything if I didn’t feel that the results might be negative for me.

It is funny how once a decision has been made and something gets approved, everything after that runs along like an unstoppable freight train.  Medicine, politics, etc.