Max going on clinical trial

Max is going on a phase 1 clinical trial (for an antibiotic called nifurtimox) as part of his therapy now that the neurblastoma has recurred. There isn't much web data on this trial - that I can find anyway - as its just started as of Nov. 20. Melissa spoke with the principal investigator on the trial this morning and we're scheduled to start Dec. 11. The trial takes place at University of Vermont and Max has to be there for 5 days starting the 11th and 5 more days around Jan 1. Below is a post to the NBLAST list from a fellow NB-parent Neil Hutchinson who also lives in San Diego and whose son Sam has had a rough time with his neuroblastoma. We'll post more as we know more. Obviously this will be tough as Melissa and Max will have to go to Vermont for 7 days (I hear they have pleasant winters just like San Diego) and I'll keep things going at home. Perhaps Nic will go with Melissa and Max too and I'll stay in SD with Hannah and keep her on-schedule and in school.

Neil Hutchinson wrote:
"I wanted to post an update on the soon-to-be-open
nifurtimox/topo/cytoxan trial. The goal is to have
it open 11/20 in Burlington , VT and soon thereafter
in St. Louis at St. Louis University Med Center
(don't quote me on the name though). I think this is
good news for the list since it means travel
distances would be shorter. The way the trial works
is that the first 3 weeks are nifurtimox only and
starting with week 4, they add the topo/cytoxan. So
you do need to be in St. Louis or Burlington for
weeks 1 and 4 so they can observe any toxicities and
do pharmacokinetics (they're trying to measure how
much nifurtimox gets into the blood serum). Once you
have met the week 1 and week 4 milestones, you can
continue treatment at your home hospital as long as
your local oncologist agrees to communicate with Dr.
Sholller, who as the Principal Investigator for the
trial, will need to be aware of counts, scans,
toxicities being seen etc."


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