The road less traveled

Yesterday was a very busy day for all of us. We headed to Philly to talk with the Dr's there and learn as much as possible about their plan for Eden. What we found out is there is no plan, no roadmap, noprotocoll. Relapsed Neuroblastoma is dealt with on a case by case basis. As one treatment may work for 10 kids but not 1 or may work for 1 kid but not 10. We will be letting Eden's body tell us what our next step is. After listening to the Dr. here is what we know. Eden will do one more round of Topatican/Cytoxin (chemo) and then she will have another MiBG, Bone Scan, CT and Bone Marrow Aspiration and Results will be sent immediately to Philly and they will contact us to discuss the best option. IF: she has progressed Disease we will probably go forward with the IMiBG treatment. IF: it has held steady or improved we will probably look at either doing the ABT-751 trial or 3F8 Antibody trial at Slone-Kettering. (At the bottom I have included a little info about each trial)

The Doctor explained it exactly like this: There is no cure for Neuroblastoma and at this point even if we couldn't see disease in her body we would still know its there and WILL come back, so the idea is to reduce it as much as possible and then try to hold it steady while allowing Eden to live a normal life.(school, playtime, friends.........) The current problem with the IMiBG is that it is very hard on the Platelets and if you have been reading the blog you will see that Eden's body is not able to produce the platelets once they have been compromised very well, so that would mean she would probably end up having to have a Stem Cell Rescue and she only has enough Stem Cells for one Rescue so we want to try and save that treatment for another time if we can.

The ABT-751 can be given once a day at home without effects on her counts and she could continue on that for years with dormant cancer cells or it could not work at all!! We will do one thing and as long as it works we will stay with it and when it stops working we will try something else. Eden's quality of life will be an equal priority with Disease control!

The 3F8 Antibody study presents a few more problems but could be more beneficial in the long run. It does cause some pain while it's being given and can cause fevers and she will have to spend some time in the hospital with this study.


Each study is not without its good and bad and our goal is to find the less of many evils!



An investigational oral, once-daily antimitotic (a class of drugs that inhibit cell division), ABT-751 is currently being studied in Phase II clinical trials for use in lung, colon, breast and kidney cancers. A Phase II trial is planned for refractory pediatric neuroblastoma. ABT-751 was granted Orphan drug designation by the FDA for pediatric neuroblastoma. ABT-751 is not a multi-drug resistant (MDR) substrate. MDR substrate compounds often develop resistance to chemotherapy drugs, and ABT-751 is active pre-clinically in chemo-resistant tumors.


An earlier study has shown that treatment with the 3F8 antibody and granulocyte-macrophage colony-stimulating factor (GM-CSF) appeared promising for the treatment of Neuroblastoma. In this study, investigators want to determine if adding beta-glucan and 13-cis-retinoic acid (isotretinoin/Accutane) will make the treatment even more effective.
Antibodies are made by the body to fight infections, and in some cases, to fight tumors. The antibody 3F8 is made from mice and can attack Neuroblastoma tumors in patients. 3F8 has been used safely in many patients, and it has killed cancer cells in some patients.
One way 3F8 can kill cancer cells is by causing the patient's own white blood cells to attack the cancer. Granulocytes are one kind of white blood cell. GM-CSF increases the number of granulocytes in people, and it makes the granulocytes better able to kill the cancer cells