Good morning! I have spent much of my morning re-researching Accutane and its use in neuroblastoma. Most-specifically I have been looking for new insights into the length of treatment. This seems to be a common question for parents. I can remember it certainly was for me and, honestly, I still wish I could get to the bottom of it. To me, Accutane represents one of the most frustrating parts of medical research. We know it works. We just don't seem to have any clue on how to use it to its best ability.
One of the great realizations for parents when they begin to near the end of therapy with their children is this relatively benign drug called Accutane. I say relative and I mean that in comparison to the high dose chemotherapy and radiation that our children have been exposed to previously. But, none the less, this drug which causes some skin issues and perceived moodiness is not nearly is caustic as most everything else they have had to that point. Sure, there are other side effects to watch out for but, again, nothing compared to what our kiddos have already seen.
Better yet, this treatment seems to come with roughly a 10% increase in survival. Seems like an easy decision. Six months of sporadic grumpiness and red peeley skin seems an easy trade at that point.
The question comes near the end of those treatments.
Why not do more?
Herein lies my frustration. Why do we only do six months? Why not less? Why not more? What is the absolute most efficacious dosing and schedule?
The fact of the matter is that we really don't know the answers to those questions. With as much science as we used to prove the Accutane increased survival we never really had the time or resources to address these questions. There are a few things we do know. We know that we need to hit a specific peak of the drug to truly be useful. This is the reason we take so much and we take it every day for two weeks. We are essentially trying to hit a certain concentration, or level within the body, that researches have seen it be effective in animal models. This is why it is so important to take full doses and to take them on time. This is also the reason that I personally (a non medical professional) advocate swallowing the pills and NOT aspirating the pills with a needle and squeezing the drug out. Without swallowing the whole pill you can not guarantee you are getting all of the drug. Furthermore, if you don't hit the drug levels, many believe we might as well not be using it at all. So, as a quick nugget of information, get the prescribed dose in.
Just getting all of the drug in is not the only issue. There is a small problem however, and that is the fact that people seem to metabolize the drug differently. Even with the same dose/weight ratio some kids achieve high concentrations and others never hit this threshold of efficacy. Could this be one of the reasons why some relapse and some do not? If we could guarantee that everyone got high enough levels could we really raise the roof on efficacy? It is a possibility and, just so you know, the COG is now collecting this information on some patients to find out.
Wow, I got off track. I meant to talk about how long our children should be taking Accutane and I ended up talking about the doses themselves. I guess this goes to show how cumbersome this topic can be. Regardless, I will write more on this topic in the days to come. Additionally, I think this would be a worthwhile topic for a seminar. I am going to write Dr. Reynold's and see if he has time in his schedule now. Maybe I could kill several birds with one stone.
There will be more to come.
My purpose is cranking now.