Another fake relapse?

Good morning! I am happy to report that yesterday went splendidly. There were no yellow stickers in school, all of our cats can account for their tails, and CPS did not come for me. That is a pretty good day in my book. I also wanted to thank everyone who wrote and offered help regarding the medical journal, Pediatric Blood and Cancer. It turns out that the head librarian at the medical school actually read my diary. Too funny. Well, it turns out that he was as surprised as I was to find out that they did not carry Pediatric Blood and Cancer. He said he would look into it. He was true to his word. Unfortunately, the subscription for the library is roughly $4500 per year and they are not able to justify the addition at this time. Go figure, I am not an employee or student. So, that means, for the time being, I am out of luck. Thankfully, I had several messages from many who read my blog offering to help me out with articles whenever I needed them. I genuinely appreciate the offers and I will take you up on them. In fact, I already have. I am currently reading over several articles as we speak.

One of the articles from this journal that was so graciously supplied to me was for my own selfish curiosity. It turns out that there was yet another case study of a child with osteoblastic lesions following therapy. You may remember that this was the very thing that happened to Sydney. Since her first relapse was never proven and her second is seemingly resolving itself on its own, it would lead someone to believe that something else must be at play. As we all know by now, neuroblastoma does not typically act that way. What if these "relapses" were something else? We know something has gone on in her legs. We just don't know what it is.

This is now the 5th or 6th documented case of these bony anomalies that I have seen. All of which have occurred in children that have had Accutane and monoclonal antibodies - either ch14.18 or 3F8. Some had treatment and some did not but all of the children have survived and they were never able to prove the existence of disease in any of them. No disease was ever identified by biopsy and none of the spots were ever verified by MIBG. The lesions showed up on bone scans and were usually confirmed by either CT, MRI or both.

I was hoping that this particular article would give me some more insight into what was occurring. However, like others I have read, there was little definitive information and much of it was speculatory. I am happy to see more cases, but I still wish there was something more definitive.

What is the moral of the story?

If your child has had Accutane and/or antibodies for treatment of neuroblastoma and presents with bone pain and osteoblastic lesions on bone scan, take a deep breath. Yes, these are signs of relapse but they are also a sign of this unknown condition. If these lesions can not be confirmed by MIBG or biopsy this may very well be a time for caution. I can not tell you when it is or is not an appropriate time to treat your child, but it may be something worthwhile to discuss with your doctor. There are now several published cases where children have had these symptoms and it has turned out not to be a relapse. In most cases the issues resolved on their own. Only enough, in many of these cases, they also reappeared in different parts of the body.
As I have said before, purpose is sometimes grey. Regardless, this does happen. Proceed carefully, you may end up with years of treatment that may have been unnecessary.

Purpose is not always crystal clear.