We received some news since my last journal update. We found out that her n-myc, which for the past 11 months we were told was unamplified, is actually amplified. It doesn't change anything as far as the treatment she has had (thank goodness) because she was already considered high risk because of her unfavorable tumor histology, but it does raise a concern about Lauren's treatment being finished. Her chances of relapse has risen greatly because of the n-myc being amplified.
Deb and Bill decided that they are going to have Lauren do antibody treatments at MSKCC...same hospital Lauren had her tumor removed. The treatments are on a 2 week on/off schedule (with accutane on the off weeks) and they hope to get 4 -5 rounds before HAMA. The short explanation of these antibodies as I understand it: (thank you Alison from the N-Blast list for the explanation)
Lab mice are injected with neuroblastoma. Those mice develop antibodies against the neuroblastoma cells. The antibodies are harvested from the mice, cloned in the lab so that there is enough to work with, then
infused into the kids who need them. The kids are premedicated with GM-CSF,then immediately before infusion, they get benedryl and a strong pain killer (the actual drug depends upon the child). The kids continue to receive these drugs (not the GM-CSF) throughout the IV infusion, which lasts about 1 1/2 hours. Most children experience a lot of pain and some hives. Some have trouble with high blood pressure, which can prevent continuation of the treatment.
The pain can be very intense, but is temporary. It is caused by the fact that the antibodies are trying to find nb cells by looking for certain receptors on them. However, the receptors on regular nerve cells chemically "look" like the receptors on the nb cells. Thus the antibodies stimulate the regular nerve cells as they go about their "search and destroy nb" mission.
HAMA means "human against mouse antibody." As I understand it, achieving HAMA is like reaching a saturation point for these antibodies. The idea is to get enough antibodies into their bodies so that they can both destroy the nb cells they run across, but also "train" the immune system (hence the term, "immunotherapy") to fight nb at the cellular level of its
own accord. The neuroblastoma would not have grown into tumors but for the fact that the immune systems of these children do not recognize nb cells as
"bad guys." The MSKCC doctors prefer the kids to get at least 4 cycles of antibodies before they reach HAMA, but that is ultimately up to each child's reaction. The clinical trial allows participation for up to 2 years.
So that is where we are right now. Hearing the news was very overwhelming to all of us, but as we found out early on ....this journey is going to be a long and sometimes bumpy one. I will update again when we find out the date Lauren will begin the treatment.
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