This is a re-posting of some information that I have posted previously. However, it is something that should remain fresh in everyone's mind. The information is as true today, if not more so. Very recently, I had a friend who had a child with a brain relapse. It disturbed me that she did not know where to turn. The issue was not with the fact that this was not a well prepared mother. She happens to be a clever one. The issue was that the information was not readily available. This is one of the things on my list of the top 10 things every one should know about neuroblastoma and the simple fact of the matter is that the information is not readily known outside of a few brains of people with too much time on their hands.
Now, you should know that I am not biased. If anything, over the last few years, I have proven the exact opposite. I don't care which researcher or which institution. I am simply interested in identifying the best options for our children wherever they may be. Furthermore, when I do have bias you should also know that I have absolutely no problem stating that it is so.
Now, onto what is important.
If you have been told that your child has a brain (or CNS) relapse one of the first calls you chould make is to Sloan Kettering. They have had tremendous success where other have failed miserably. This is a life or death decision and it needs to be made quickly. I have read the research in this particular area for years and there just is no comparison and no one with the same level of success. To give you an idea of the difference - most kids with CNS relapse will succumb to the disease within 3 to 6 months at best. It is a nasty diagnosis. However, if you qualify for the study at Sloan Kettering you will find your odds of survival crawling up to 80% or more.
Many will argue that this difference is due to patient selection. Honestly, I don't know if that is the case but I can tell you that I know many of the survivors personally and can tell you first hand that this is something you need to investigate. If you do qualify it could very well mean life.
Don't forget that. As of this date, remeber this simple equation:
CNS relapse = Sloan Kettering
Listen you don't have to stay there. You don't even have to listen me. Just make sure that, as you are listening to all of the doom and gloom, you pick up the phone and call Sloan Kettering to get a second opinion. It is worth asking the question.
And again, do it quickly. Time is of the essence and there is much to be coordinated.
Finally, unfortunately the latest abstract on the research regarding the CNS relapse from Sloan Kettering that I have is from 2007. However, much of the success still rings true.
It can be found below:
Metastatic neuroblastoma (NB) to the central nervous system (CNS): Improved outcome with combined modality including 131-I-8H9 or 131-I-3F8 radioimmunotherapy (RIT) delivered through the cerebrospinal fluid (CSF).
Background: NB metastatic to the CNS (NB-CNS) is difficult to control. We describe a salvage regimen incorporating intra- Ommaya RIT delivered to the CSF. Methods: 37 patients (pts) with NB-CNS (parenchymal masses and/or leptomeningeal [LM] carcinomatosis) treated at MSKCC from 1988 through 2006 were reviewed. Nine (group #1) of 37 pts developed NB-CNS metastasis (median age 3.8 years) and were treated with a salvage regimen: resection of parenchymal masses, 2160 cGy craniospinal irradiation (CSI), intravenous irinotecan and oral temozolomide, and RIT with 131I-8H9 and or 131I-3F8 targeting tumor associated antigens on phase I/II studies. Immunotherapy (intravenous anti-GD2 monoclonal antibody 3F8 plus subcutaneous GM-CSF) was also given for systemic control. Survival was compared to the other 28 (group #2) pts who developed NB-CNS (median age 4.2 years) treated with combinations of surgery, chemotherapy, and radiation but without CSI + RIT. Results: All 37 pts had high risk disease at initial diagnosis of NB. 9 of 9 group #1 pts had marrow and/or bony involvement; 6 of 9 had MYCN amplification and 5 of 9 had serum LDH >1500 U/ml. All had intensive chemotherapy and radiotherapy prior to CNS relapse. Despite this, the CNS salvage regimen was well-tolerated. Myelosuppression following CSI and chemotherapy was common; 2 pts received stem cell support. All 9 pts in the RIT group are alive and well, disease-free at 3+, 11+, 15+, 18+, 18+, 20+, 22+, 31+, 42+ months since CNS relapse. In contrast, pts in group #2 had a median time to death of 5.5 months, (p<0.0001) for survival by Kaplan-Meier analysis. Conclusion: Similar to CNS metastases in most other solid tumors, conventional therapies have been ineffective for NB-CNS. The addition of RIT using 131I-3F8 or 131I-8H9 is well-tolerated and improves the prognosis for these high risk patients.
There you have it purpose in bold.