Nifurtimox Update

Max has been taking the nifurtimox now for about 8 weeks; started Dec 11, 2006. I think he was the second kid on trial. Dose level: ?. It's not a blind study, but the first phase includes increasing dosage every 3-5 patients or something. Max is on the lowest dose which I think is 120 (that's what the pill says on it). He's had two chemo rounds during that time (4 total since he recurred). We have not noticed any side effects from the nifurt and his weekly nuerological examines are fine. He has and mri, mibg and bone marrow aspiration before each chemo for study purposes. Max has also just finished 12 days of radiation.

So far, the scans haven't been able to tell us anything undeniably positive except that the cancer is not growing. They're being done so frequently and at times that are not normally associated with the standard protocol, that the doctors aren't sure how to interpret the data that they're getting (there's nothing to compare it to). The bone marrow stain has been negative the last two times which is great. The mibg doesn't show any change. The mri shows all kinds of activity up and down Max's spine, however, it could be showing cells exploding not cell growth.

Max can't be on any thing else while on the trial. As soon as the trial is over (March) were adding Vit C, Calcium + Vit D, possibly bisphosphonate, and we're looking into a couple other things that John London & Neil Hutcinson just mentioned on acor (artemisinin, calcium butyrate).

From what I understand, the nifurtimox trial runs with topotecan/cytoxin chemo drugs. That's the beauty of this trial - Dr. Sholler is trying to find new means of helping our kids without asking us to stop using methods already in effect that have been proven to do something (hence the topo/cytox + nifurtimox).

Dr. Sholler is really trying to help us help our kids. She's in the right mind set, looking at the here and now, knowing that this is a very aggressive and elusive cancer. She's knows we can't ignore the obvious treatments like chemo just to try a new drug for some study data that may be useful 20 years from now.

My husband and I will be at the NB conference in VT in March. We hope to meet a lot of other NB parents and specialists there as well as at the conference in Chicago this summer.