The problem with 3F8 is that 25% of it is composed from mouse genes. A person’s body will usually eventually build up an immunity to that mouse gene (called HAMA – Human Anti Mouse Antibody) and then the 3F8 is no longer effective and you have to stop treatment. They usually hope to get in at least 4-5 rounds of 3F8 before you get HAMA. Obviously the more rounds you get in, the better it is. Also, doing a stem cell transplant can make you more susceptible to getting HAMA earlier on. In addition to that, doing the chemo plan we were on at Iowa City doesn’t protect you against HAMA as well as Sloan’s protocol does (obviously this is according to Sloan, I’m not going to knock the chemo plan we were on in Iowa City since everyone has a different protocol they follow). When we first asked Iowa City to follow Sloan’s protocol, they were uncomfortable with that saying that ethically they didn’t agree with it since they didn’t agree with the 3F8 treatment being effective and that stem cell transplant was better. So, until I talk to them tomorrow, I won’t know if they’ll be willing to give Eli the Round 6 of chemo that Sloan suggests or if they’ll just tell us to go somewhere else (in which case we’ll either try to go to Des Moines, or maybe Kansas City, or somewhere that they would be willing to do it that is closer than NY). We’re really hoping they’ll help us along, but I’m not sure yet. I can see it going either way at this point. I know they are going to be disappointed that we are doing 3F8 and delaying the stem cell transplant, but I can’t really get my mind around moving forward with stem cell transplant quite yet with the stem cells we have in the freezer in Iowa.
As another aside, there is a movement going on trying to raise the $1-2 million dollars it would take to Humanize 3F8. That means taking out the mouse genes and making it totally humanized so HAMA wouldn’t happen. Neuroblastoma is considered an “orphan” cancer since it is so rare. Pharmaceutical companies are not developing new treatments because there is not a large enough patient base to make development profitable and funding from the government is similarly limited (Cancer Research funds get cut every year and some of the first trials to get thrown out are the rare childhood cancer trials). I’m not being political or anything, that’s just the way it is. Anyway, for anyone interested in that kind of stuff, I’ve found http://www.bandofparents.org to be a very informative website, especially the “About Us” section.
Sloan actually does chemo differently than Iowa City. It is done out patient. That means you report in, hang out for like 6 hours while most of the chemo is administered, and then for the chemo that runs continually over 24 hours, you actually take it back to the Ronald McDonald house with you in a backpack that is hooked up to Eli’s pipes. This round of chemo is particularly hard on the bladder, so they wanted to get Eli on fluids right away. So we went back in to the hospital tonight and got a backpack that just has fluids and he’s been on those all night. He’s now sleeping in a nice big Ronald McDonald House bed with a backpack pumping away next to him. I told him it was either the backpack (which I wear and it has plenty of “lead” tubing) or we could haul an IV pole down York Avenue. The backpack didn’t sound so bad then. 🙂 So the really nice thing is that we get to sleep at the Ronald McDonald House and do activities at nights here and participate in the free dinners instead of being stuck in the hospital! This is what we were going to be doing until Friday anyway, so we might as well be getting a chemo round taken care of as well!
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