A sign from Sydney

A couple of times a week I scour the medical journals for neuroblastoma articles of interest. It is a habit I got into that is just about as reliable as me writing in my diary. It is a great exercise and their isn't a day of reading that I don't find at least one or two articles worth reading. You should know, that is about my limit though. Of the 50 to 100 abstracts I peruse most of the research is too early to be on my radar. As I have mentioned before, there are thousands of things that can kill neuroblastoma in a petrie dish. The problem is picking the winners - of these 1000s of drugs ultimately only 1 or 2 of them may truly be of value to kids. This points to the importance of preclinical research. We need to pick the winners while research is cheap. Once the research is moved into the clinic it becomes far more expensive and time consuming.

Regardless, I am off the point.

In this morning's scouring I found a great article from, of all places, Sydney, Australia. It is a subject that I am quite passionate about considering my own Sydney. The article, "Hypercalcemia and osteoblastic lesions induced by 13-cis-retinoic acid (Accutane) mimicking relapsed neuroblastoma." This is the first published article which deals with the lesions that have appeared on Sydney. This article is about a boy from Australia that had similar treatment to Sydney. Most importantly, he had both antibody therapy (ch14.18) and Accutane. Similar to Sydney he developed lesions after treatment. While these lesions appeared like relapsed neuroblastoma they were, in fact, not. One of the key signs here was that he was positive by bone scan and negative my MIBG - just like Sydney.

I tell you this for two reasons. First, if you run into this situation there is reason for hope that it may not be neuroblastoma and second that you proceed cautiously. After all, we put Sydney through 2 additional years of therapy based on similar findings and it is now clear that it may never have been a relapse. Given her most recent lesion (which is now over 1 and a half years old) it seems we have even more evidence that her "relapse" almost 5 years ago may not have been a relapse at all.

The abstract draws the conclusion that the osteoblastic lesions are most likely a result of the 13-cis-retinoic acid (Accutane) but I am yet to be sold. I am anxious to read more to see why they draw that conclusion. I still believe that the immunotherapy might also be suspect. Unfortunately, I was only able to read the abstract here: http://www.ncbi.nlm.nih.gov/pubmed/19492317. It seems that the full text article is not available through our medical library. I am hoping to get it through other means in the next few days. Hopefully, by then, I will have even more information and clarity. I am happy to see something finally in print. While I have personally met many other families of children with this side effect I have yet to find anything definitive. Suffice it to say, there are many kids out there that face this issue and it is something more parents need to be aware of.

See, purpose from a friendly place.