The Neuroblastoma Foundation

Video on NANT Clinical Trials Available

Mark Dungan — Fri, 02 Apr 2010 10:56:27 GMT

The video recording of Dr. Judy Villablanca's presentation of "An Overview of NANT Clinical Trials - part 1" is now available online. You can watch it here:

http://www.neuroblastomafoundation.org/blogs/seminars/archive/2010/02/08/overview-of-nant-clinical-trials-part-1.aspx

Resection options for relapse

Raelene Soritau — Thu, 16 Jul 2009 01:04:58 GMT

If we are told by our surgeon that there is not a chance for resection after our child has relapsed should we get a second opinion? Who are the leaders in surgery for neuroblastoma?

Insurance doesn't pay for clinical trials...help?

Katie — Mon, 19 Oct 2009 19:25:50 GMT

We are interested in enrolling our son on ANBL0032 (antibodies) but our insurance doesn't pay for clinical trials. Has anyone been through this and have any advice? We are prepared to appeal but I was just hoping for some advice. I worry since so much of relapse treatment is done through clinical trials, not to mention the antibody trial. We're in CA.

Thanks for any help...

OMS and survival rate

themacdonnells — Tue, 25 Aug 2009 16:57:00 GMT

My son was diagnosed with OMS shortly after his NB diagnosis. I have been told that children with OMS tend to have less life threatening disease. Is true? My son's cancer had spread to all but a few bones and had created another tumor in his head by the time they found it.

Online Seminar Tomorrow - August 26th

Mark Dungan — Tue, 25 Aug 2009 11:12:33 GMT

Don't forget to register for the seminar on An overview of the Phase 1 Trial of TPI-287/Temezolomide in Neuroblastoma and Medulloblastoma tomorrow.

Dr. Giselle Sholler, principal investigator and pediatric oncologist from Vermont Cancer Center, will be presenting important information regarding the newly opened "Phase 1 Trial of TPI 287 as a Single Agent and in Combination with Temozolomide in Patients with Refractory or Recurrent Neuroblastoma or Medulloblastoma." This presentation is intended for parents and caregivers of children with refractory or recurrent neuroblastoma and medulloblastoma. Dr. Sholler will provide an overview of the preclinical research leading up to the trial. She will also be discussing the rationale behind the trial, the purpose of the study, and the eligibility requirements. Dr. Sholler will share a summary of the treatment plan and delve into some of the patient experiences that have been seen previously. Parents of children that have participated in this trial will also be available to share their experiences. The presentation will be followed with a question and answer session.

Participation in this online seminar will provide you with the information necessary to aid your and your child’s oncologist in deciding whether this trial may or may not be appropriate for your child. Please join us for the hour long presentation and question and answer session on Wednesday, August 26, 2009 at 12:00PM CST.

Title:		An overview of the Phase 1 Trial of TPI 287/Temezolomide in Neuroblastoma and Medulloblastoma

Date:		Wednesday, August 26, 2009

Time:		12:00 PM - 1:00 PM CDT

After registering you will receive a confirmation email containing information about joining the Webinar.

System Requirements
PC-based attendees
Required: Windows® 2000, XP Home, XP Pro, 2003 Server, Vista

Macintosh®-based attendees
Required: Mac OS® X 10.4 (Tiger®) or newer

Space is limited.
Reserve your Webinar seat now at:
https://www2.gotomeeting.com/register/601120458

radiation

Nancy Tartaglione — Sat, 22 Aug 2009 02:29:18 GMT

Grandaughter will have to have radiation after 2nd stem cell. Will be for traces in skull. Heard there are severe side effects. Would appreciate any info

After the storm

Kendra — Mon, 10 Aug 2009 03:11:02 GMT

What happens after your child is in remission? what prevent this monster from returning? Are there wholistist meds

Tandem Transplant

Karen — Wed, 05 Aug 2009 05:12:26 GMT

Is there any data to support the benefits of doing 2 transplants instead of just a single?

Appropriate length of Accutane treatment?

hope4nb — Fri, 31 Jul 2009 16:20:08 GMT

My daughter's oncologist told me that we would receive six months of Accutane. We've heard from other neuroblastoma parents that their children are receiving more. Does anyone know about this? Thoughts? What is the appropriate length of treatment?

Heredity question

sgp_warrior_mom — Thu, 16 Jul 2009 00:50:17 GMT

My youngest grandson was diagnosed with neuroblastoma. He has an older brother who seems to be healthy. Should we have the older brother tested to make sure he's not likely to develop neuroblastoma too? Thank you for your help.

Cisplatin and Hearing Loss

Raelene Soritau — Thu, 16 Jul 2009 01:03:20 GMT

I have read articles about the use of cisplatin and its effects on hearing loss. What are the latest journals saying about this. I have heard through the grapevine about combining another drug with cisplatin that has actually decreased the chances for hearing loss but do not know any details and if that is a part of the protocol now for treatment.

Welcome!

Mark Dungan — Sat, 11 Jul 2009 15:31:59 GMT

Welcome to the neuroblastoma treatment forum. Here you will find the treatment discussion forums, topics, and posts. Read what others have posted about dealing with side effects, getting support, and hear their experiences. Join this online support group and submit your questions to the community today!