Bob met with Doctors Mostofi and Moshang at CHOP to talk about starting Max on Sandostatin. In talking he learned that Max has pituitary gigantism and this will be reclassified to acromegaly (also known as gigantism) when he gets older. They were able to find 5 other children that had NF-1 and were being treated with Sandostatin. Because the numbers are so limited there just isn't a lot of guidance for what to expect for Max since most recipients of Sandostatin are adults. The good news is that the side effects of Sandostatin aren't as bad as the other medicines he's already taken.
There is a 20% chance that Max will have trouble with his Gal Bladder. It is unlikely that he'd get gal stones. Instead it would be kind of a sludge that would cause abdominal pain and could lead to problems with digestion and moving his bowels normally. If this does become a problem there is medicine that can help. Unfortunately because he'll be taking Sandostatin for the rest of his life, if he does have problems with his gal bladder there is a further likely hood that he'd need to have it removed. Not horrific but certainly something he could do without.
The consensus is that Max's elevated growth levels are a result of the tumor around the hypothalmus and pituitary. His tumors are inoperable and because he is young and has NF-1 it is unlikely that he'll receive radiation - the other 'common' way to try and stop elevated growth levels from pituitary tumors. Unless his treatment for NF-1 changes or his tumors change significantly they believe Max will need to take Sandostatin for the rest of his life.
Prior to starting Sandostatin they want to take one more set of blood tests to be clear on his hormone levels. Also, they want an ultra sound of his gal bladder so that they have a baseline in case he does start to have trouble with his gal bladder. Max is set to see the doctors again near the end of June. They'd like him to start in May so that he has two doses by the next time they see him. Max will be able to get the Sandostatin at the same time as the Lupron so it shouldn't be too much of a change for him. Hopefully he'll make the majority stats this time around and NOT have any reaction.