Thursday, April 24, 2008

2008 Neuroblastoma Conference

Good morning! Well today I wanted to make everyone aware of the upcoming Neuroblastoma Conference for Families and Caregivers on July 17-20, 2008. I tell you this because I think it is important for just about every family that has (or has had) a child with neuroblastoma. Not only is it a great time to meet other families and children that have walked in your shoes but, also, it is an incredible opportunity to meet with the world's best when it comes to treating neuroblastoma. In fact, this year's conference has some of the top names in neuroblastoma research and they will be tackling some of the most controversial subjects in neuroblastoma treatment. Knowing what is coming, I can guarantee that you will learn things that you need to know. Many of us think treatment is black and white and actually it contains many, many shades of grey. The right answers can be found but it is often dependant on a thorough understanding of the treatments, their rationale, and their side effects. Often, the perfect drug requires the perfect timing. We will address the pros and cons and get to the facts. You will get the information you need to know.

One of the most interesting things about this year's conference is a change from the way we have done things in the past. Typically, each presentation during the conference lasted between 30 and 45 minutes. That was then followed by a 15 minute discussion period. Although this pattern will continue for many of the presentations, we will be doing something very different for two of the most important topics. This year we will tackle 2 subjects in the form of a panel round table discussion. We are hoping that this change in format will help to tease out some of the important issues and questions that are rarely discussed but vitally important to know. Additionally, we are hopeful that it will also bring to light the many sides of every issue. The panels will be made up of two groups, a group of neuroblastoma experts and a group of parents. The two topics that we will be covering are Transplant Options and Relapse.

During Transplant Options we will be discussing every major therapeutic approach available. We will discuss the pros and cons of single transplants, tandem transplants, autologous transplants and mini allogenic transplants, transplant combined with MIBG, and finally no transplant in favor of immunotherapy for consolidation. I can't guarantee a definitive answer on what is best for every child but I can guarantee that you will walk out of this discussion knowing the pros and cons of the available options. Personally, I am extremely excited about these discussions because I truly believe that we will finally be able to get to the bottom of many of the great questions of neuroblastoma. Several facts will come to light that are rarely, if ever, discussed.

Relapse is also a very hot topic. As you probably know, this has been a personal interest of mine. There are different beliefs and strategies to consider when choosing relapse options for your child. Often these differences are never discussed with families. We are going to discuss the various strategies and their pros and cons. We will also have a through discussion on the various options available and how they can be utilized within the treatment plan. Parents are often looking to the next treatment that might work instead of the big picture. By understanding the big picture we as parents can make better decisions, better understand our options, and understand the perspective of the oncologist. This knowledge is useful to help us carefully balance efficacy and quality of life. Finally, we hope to help parents understand how to identify promising treatments for their child and how to interpret some of the preclinical data. We often make decisions based on others response or lack thereof and it is important to understand when it is appropriate (and when it is not) to do so. This will be one of the most important and enlightening discussions this year.

As usual we will also be discussing all of the other important aspects of treatment from stage I to stage IV. Additionally, although I have never attended, the angel parent sessions will also be happening concurrently. In the past, many of the parents and families that have attended have told me that this was an incredibly valuable experience. If you have lost your child to neuroblastoma, I encourage you to attend.

Finally, time is running out. Be sure to register today. Complimentary rooms are first come / first serve. You can find out more and register here:

With hope and purpose,

No comments: