After much thought and weighing out each option for treatment, and conversing with both our team at MSKCC and Dr Sholler in Vermont, we have decided to take the subtle approach and start Dylan on the clinical trial at MSKCC Perifosine This study involves oral medication and the side effects are very minimal (usually fatigue and possible diarrhea) The good thing is that this treatment should not effect Dylan's blood counts and therefore will have the least impact to his life quality as hospital visits will be minimal. This is the main basis on our decision, we wanted something that was new, something that would not effect Dylan's lifestyle too much and minimal hospital admissions. This treatment has not been used for a Neuroblastoma patient and Dylan will be the first. This is not a bad thing, Dylan was one of the first on the Cetuximab trial too, it is much less toxic than chemo based therapies and you never know your luck! The other treatments available all involve a chemo agent of some description and Dylan does not respond well to chemo anymore, even the lowest doses make him neutropenic and with only one bag of stem cells left, we really need to save them for later, so that more doors will be open for future progression. Vermont had several trials available and that Dylan would qualify for, Nirfutomox, TPI 287, Bortezomib with Fenretinide, Rapamycin with Vinblastine and also a vaccine coming out in the next few months. Dr Sholler and Dr Modak were both in agreement with avoiding drugs that would lower Dylan's blood counts and disrupt his life quality at this stage, however if Dylan's cancer starts to progress at any point we would need to revisit these options again. Dr Modak assured me that Dylan's case is very closely monitored and any sign of progression would be jumped on immediately. We are very glad that we went to Vermont, the foundations are laid in the event of progression and we are more knowledgeable to what is available to Dylan. As you know Neuroblastoma is a very aggressive cancer and every patient has a different response, Dylan is stable today and has been for years now, but it is almost certain that his cancer will progress at some point and has the potential to consume him very rapidly, this is why we have to always be one step ahead of this disease, always know our options and prepare for progression as early as tomorrow. Dylan in the meantime has been attending school, playing with his RMDH friends and continuing his dental work. The root canal proved very uncomfortable for him, and it has been postponed until the 13th. This Friday we visit with Dr Modak to prepare for the Perifosine study now that the decision has been made. Not much else is going on, the weather here makes it hard to venture outside unless you really have to, we had snow yesterday and the rest of the week in bitter cold. Dylan has spent more time on his Naruto webpage, I am sure he would love you to take a look by clicking HERE
