Accutane - A mountain of questions.

Yesterday's post on Accutane generated a flurry of email. I received many comments but, most importantly, it really established that concerns and questions regarding Accutane are very much alive and well in the minds of parents both during and post treatment. It should tell you something. Sydney, herself, is 6 years post diagnosis and 4 years post Accutane (she had 13 rounds in all) and this is still something that runs through my mind. Comments on this topic came primarily in two groups: those concerned about toxicities that I did not mention and those that wanted to know if they could continue taking Accutane longer than the traditional 6 months.

To me, it just illustrates the importance of getting a true expert in on this conversation. So, for that reason, I will be scheduling an online seminar and/or video interview on this topic so that we can get all of these questions addressed. I anticipate this happening in the next couple of weeks and I will let everyone know when I have a finalized time.

However, in the meantime I would like to address the first topic because I think there are important things to consider. Toxicities, were do I begin? There are many toxicities that I did not discuss but mostly from the standpoint that they were not universal. Individual children will likely experience additional side effects, which may be severe in some cases. Other side effects have included dry eyes, pink eye, dry nasal passages, headaches (some severe), neck, back, leg or knee pain or stiffness, leg cramps, muscle jerks, nausea, vomiting, constipation, diarrhea, lethargy, nosebleeds, and sensitivity to light. Crankiness, mood swings, flying off the handle, tantrums, and other “horrid” behavior are not uncommon. Most if not all of these side effects go away after the treatment cycle has been completed.

However, some children on Accutane treatment have had even more serious health concerns. Some children have had such severe pain (such as headaches or leg pain) that morphine, oxycodone or other heavy painkillers were required. Some have experienced high blood pressure. One of the most serious side effects experienced by some children during Accutane is very elevated calcium levels, in some cases high enough to require hospitalization. It is therefore very important to have physical exams and blood tests while your child is on Accutane to see how his or her system is handling it. Any symptoms that concern you should be reported immediately to your child’s oncologist.

One mother whose child was a part of the phase 1 dosing trial experienced severe cardiac issues during one of the doses. Thankfully, the child was okay and they never isolated the cause but it can show that in extremely high doses there are many potential unknowns.

Some also talked about the issues related to pregnancy. We know pregnant mothers should not take the drug, much less handle the pills. It is dangerous to unborn fetuses. Period. Some of the email speculated that there could be long term impact and cited examples of retardation and autism. However, I would be fairly careful to point out that there is a relatively high incidence of these conditions and they appear just as rampant in populations where Accutane was not involved. Long term impact such as this is relatively unknown and given the very known reality that it increases survival for children with neuroblastoma so significantly, I would be hesitant to let these theoretical worries impact my decision. It is important to keep in perspective. Most high risk patients will not be able to bear children due to the chemo and radiation they have seen anyway. So again, in comparison to all of the drugs these kiddos have seen previously Accutane is a relatively benign.

However, with all of that being said there is more information continuing to come out regarding the long term effects. There has been some discussion as to whether Accutane is the cause of some of these late effects but with all of the treatment they have had it can sometimes be hard to pin a late effect on a particular treatment. There have been recent findings and discussions on this topic and I think I will let the experts speak to these during the seminar.

Well, there I go again. Another complete entry on Accutane and I did not even broach the subject of how long the drug should be taken. That will be left for another day but I am sure this is one of the topics that the experts will delve into. More information on the seminar will be forthcoming.

Purpose plows on.