More news and a recap. I may have misled most of you with last night's post, although Hans' CT scan was clear, it doesn't negate or override the progression noted on the MIBG scan. Hans is still considered to have progressed on Millennium, so now is the time to Change Up. We got more wonderful news today that Hans' bone marrow sample was negative for NB. Whoa, we didn't see that coming, bone marrow biopsies can be hit or miss. We'll probably never know if we just missed sampling some tumor in there. We have consented to sign onto the ALK trial at CHOP.
Here's the scoop. There has been a lot of buzz and excitement about a trial widely known as the "ALK Trial" which takes advantage of a certain genetic mutation present in some Neuroblastomas. If the mutation is there, the drug tends to work well, if the genetic expression is not there, the drug has still been shown to work in a smaller percentage of patients. The drug can"block or inhibit two proteins called c-met and Alk. These proteins may be important in the growth of certain types of cancer cells. " (taken from the patient consent form)
To this point we haven't been able to determine if Hans has this genetic experssion. Why? First off, because when Hans was first diagnosed back in 2006, researchers weren't even yet aware of this genetic link. Our team stored samples of the tumor from the inital biopsy. However, those samples were routinely stored in paraffin wax at that time, rather than frozen. By Hans' 2009 relapse, Dr. Mosse here at CHOP had discovered this genetic link! At that time we had a tissue sample of Hans' initial biopsy sent to CHOP for testing. They were unable to use the sample to run the test due to the way it had been stored. Dr. Maris assured us not to get upset by this, he said that Neurobalstoma can actually change its genetic make up from inital diagnosis to relapse anyway. We wanted Hans' tumor tested at that second relapse, but Hans presented with only a bony lesion (the skull) and no marrow disease. It was impossible for us to get a biospy of his disease because it wouldn't have been safe for Hans.
Since we have a new positive spot on the MIBG scan, we made an effort to do a biopsy of that area (the right hip) for that testing. We found out just this afternoon that the bone marrow biopsy is negative. So, there is nothing to test.
Regardless, we are hopping on the trial in the hopes that he does have the expression, or that it will work for him even if he doesn't.
A new phase of this trial is just about to open. It was so successful and showed so few side effects that the investigators are opening up a new higher dosing level as we speak. Hans will be among the first kiddos to enroll at this new highest dose level. No side effects are really anticipated. Since it is so targeted, there should be no need for blood transfusion, no hair loss! Yay. I can't wait for those hairs to pop back up.
BUT the biggest problem is that they need us back at clinic in CHOP on each of the next four Wednesdays!!! I can't quite figure out how to wrap my mind around that one. With such a long cross country commute, we're considering staying out here and maybe only making a couple of trips back home, poor Kev:(
Anyone got a beach house in Jersey they can give up for a couple weeks;)
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.