Hot 3F8 is given to Dylan

Dylan started the long awaited clinical trail “Combination of Targeted I131-3F8-Mediated Radioimmunotherapy and Bevacizumab - A Phase I Study” Protocol 06-072 (In short - Hot 3F8) On Monday night we decorated his hospital door with the Halloween theme “Radioactive Man!” Yes you do have to have a sense of humor to get through this lifestyle. All the doctors and nurses thought it was fantastic. Dylan also made ghost, bat and pumpkin cutouts that we stuck around the room and the child life team came around with a candy bag for Dylan. On Tuesday, The radiation team came in and prepared the room, then after 1pm Dr Modak came in to start the hot 3F8 infusion. Dylan was given pre meds of Aloxy for nausea, Delodid for pain and Benedryl to help with any reactions. Then the infusion went through over about 20 minutes. Dylan sat on the bed fighting the sleepiness the drugs made him feel. He stayed awake waiting to see what the pain was going to be like. The infusion finished and the flush was started. Dr Modak said sometimes the pain comes during the flush. So we waited, Dylan waited, Dr Modak waited with us for 1 hour…No pain!!! I got worried, why was there no pain??? Dr Modak explained that sometimes, a small percentage of children don’t get pain, particularly with the hot 3F8. Dylan’s heart rate did rise from 110 to 140 and he was certainly radioactive on the gage. He said that because Dylan has so much disease, this may be one of the reasons. He told me not to be worried about it because he has had other children in the hot 3F8 study done years ago that had no pain and it still worked. Dylan will have a scan done on Friday and this will show us where the hot antibody went to (hopefully sucked up by all the tumor cells). The dose of the 3F8 component in the hot 3F8 is that of the same dose given on one day of regular cold 3F8. I spoke with a couple of other parents who told me that their children sometimes had no pain with the cold 3F8 and that they didn’t have a HAMA (HAMA meaning the body rejects it) Dr Modak told me that it is impossible for Dylan to have a HAMA because he has never had 3F8 before, so that is not the reason for the absence of pain. So last night Dylan slept behind the lead walls as he was radioactive, I slept on the fold out bed on the other side of the wall. The amount of radioactive MIBG given was a 5th of that used with the MIBG therapy, which is why it was ok for me to remain in the room with him. Today Dylan is as bright as a button, bored, but happily eating eggs for breakfast. Soon he will have the Avastin (Bevacizumab) component of the trial. This is another type of monoclonal antibody, combining portions of proteins from human and mouse tissue. (between the 3F8 and Avastin I better hope Dylan doesn’t grow a tail! LOL) Avastin attaches to a protein, called vascular endothelial growth factor (VEGF) given off by the cancer cell to stimulate the growth of new blood vessels to support the tumor. Avastin blocks the development of these new blood vessels. In other words it cuts off the blood supply feeding the cancer tumors. The side effects should be minimal to none, but he may get a rise in his blood pressure so that will be closely monitored, although Dylan always has low blood pressure so I don’t think this will happen. It may also drop his platelet counts, so a transfusion will be likely by Friday. Dylan’s radioactive level has dropped this morning so by late this evening we will be discharged. The Avastin takes an hour and a half to infuse then he also needs a blood transfusion which will take two hours to go through. GCSF injections have also started up again to raise his ANC.