Monday, July 21, 2008

The best conference ever!

Good morning! So, you are going to have to bear with me. I slept in and I just woke up. The brain is still idling and is yet to warm up enough to get into first gear. With that being said, though, I am cognisant enough to say I am extremely happy to be back home with my kiddos and my wife. On the other hand, I can also say that the CNCF's Neuroblastoma Conference was, in my honest opinion, the best we have ever had. It was spectacular. The only problem for me was the recovery. After spending 3 nights going to bed at around 2:00 AM and getting up at 6:00 AM I truly needed some rest.

Now, there were some really important items to come out of the conference. The panel discussions on relapse and, especially, on transplant were extremely valuable. In both of those sections alone I think we gained some valuable insight. However, there simply was not enough time to address each of the ever so important issues. Going into these two discussions I had a list of about 20 insights and discussion points that I felt were important to get out. Unfortunately, we were only able to cover a few of those topics in the time allotted, but, I am still very happy with what came out. It is a challenge for any family to make a decision on what is right in these situations and I am happy to tell you that there was complete agreement on the fact that there are no definitive and absolute blanket answers. There are, however, some clues. Sometimes, there are, very clearly, answers.

So, what was my take home golden nugget? There were a bunch. If you did not get to go I would love to tell you that there is a highlight video of all of the most important points. Unfortunately, I can't do that. You are just going to have to watch all of the videos once we get them up on the Internet. Hopefully, that will be sooner than later. (But, don't write my daily to ask were they are. I can't put them up until I receive the raw footage.) The good news is that I can give you a cheat sheet. Over the next few days I will do that. In the meantime, I can tell you this. There is no answer to the transplant question. No one knows what is best. The only thing we can all agree on is that if you have residual disease going into transplant you probably need to be looking at and considering something other than a single autologous transplant. This may come in the form of no transplant, a tandem, an autologous transplant followed by a mini allogenic transplant, or an MIBG/transplant. Although we wanted one, there is no clear statistical answer as to whether the survival rates at Sloan Kettering are any better than those of the COG.


However, that is also not to say that there are probably times when it is better to chose one over the other. We can discuss this more in the days to come.

Let's see, relapse. Hmmm. That is a hard one and there is no answer there as well. I think we all found out that it is highly dependent on the child. There are long term successes. There is also some debate on whether we call these kids cured but there are very definitely some very long term survivors. Response seems to be the key. It is pretty intuitive - the more your child responds the better chance you have to achieve a long term remission. There is no clear path. In other words, there is no evidence that going with a high dose strategy is any better than an intermediate or even a low dose one. It is dependent upon the child and the family's wants and needs. There is a trade off with every decision.

There were a litany of other important points as well. Dr. Cohn's presentation of ALK inhibitors is leading many to hope in the future. This recent discovery by Dr. Maris's team is revolutionary. I am happy to report that the Nestle vaccine trial that Sydney was on is back open with some minor changes. I am even happier to say that there were some incredible responses by many in that trial. Dr. Cheung also gave a great talk on 3F8 and Sloan. I personally believe there were some important realizations to be made regarding antibody therapy. There is also still much in their pipeline. I was less happy regarding the presentation of the 14.18 antibodies. I felt it was terribly incomplete and missed on many points. However, I was happy to hear that there was another version of the 14.18 antibody available at St. Jude's to children with refractory or relapsed disease. I believe it holds great promise but that was hard to get from the presentation. I could go on. There was more and more. Unfortunately, there are rugrats stirring and it is time to make my way to the shower.

It is good to be home but I already miss all of the families, physicians, and friends that were at the conference. I can't believe it is already over.

With hope (and recovery)

It was a purposeful weekend.

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