Someone posted this article yesterday in a Facebook group I am in. The gist of it is that there is a medication used to treat breast cancer by turning off the PAX3:FOXO1 genes, which also cause cancer in some kids with alveolar Rhabdomyosarcoma. On Monday, the doctor said Eli is FOXO1 positive. When I asked her if he had the PAX3 or PAX7 fusion (that’s another possible genetic translocation for his cancer), she said the report wasn’t more specific, so she’s going to look into it. (Just a disclaimer, the article mentions a less than 8% survival rate when metastasized, however I don’t think that is correct, since all the sources I’ve seen indicate 20-30% or 20-40%. Eli’s doctor said it’s 30% for him).
When I’ve asked her questions about this study or the one for which I signed papers, she keeps assuring me that he’s doing the best treatment option. The thing is, neither of these studies are ones that Eli is currently eligible. They are for kids whose cancer has returned after they had their original treatment. I get the impression that she thinks I’m trying to get them to put him on some experimental drug, even though that isn’t what I’m asking for.
What I AM asking for is more information about my son’s tumors so I can better understand it. Before I saw this article, I had been reading another scholarly paper that talked about different prognoses depending on the specific genes involved (PAX3 or PAX7 and FOXO1). This article indicates that ARMS (alveolar Rhabdomyosarcoma, see, I’m learning the terms and acronyms) with the PAX7:FOXO1 transcription factor may have a better prognosis than the one involving PAX3, although PAX3:FOXO1 transcription factor is more common.
What I got out of all this, is that if, after Eli’s current treatment regimen is over, his cancer returns, there may be a drug for that.