We saw Dr Modak this morning and he had some good news and some bad news for us. The good news is that Dylan’s MIBG scan is showing a slight improvement in disease, so it appears that the Cetuximab trial is doing more than just keeping him stable. Dylan’s urine markers also show that disease is still present but not progressing, HVA 34 and VMA 31. This is great news. Dr Modak said we just have to keep slowly chipping away at his disease and right now we are in a good position to keep doing this. The bad news is that the hot 3F8 antibodies still have 2 more stages to pass before they are released, meaning it now looks like they will not be available until the end of Spring early summer, which is June. Dr Modak said that the MIBG therapy is being released in 2 weeks at MSKCC and that Dylan is also eligible for that, although he does not recommend it at this stage. If Dylan had disease progression and was not stable, then MIBG therapy would be the next step. Because Dylan is stable, we have the time to wait for the hot 3F8 trial now, which has a much higher potential to decrease Dylan’s disease. So for now Dylan will remain on the Cetuximab trial and has 6 cycles ahead of him, six weeks of treatment. Dr Modak explained that this is the best option because it is not an aggressive form of treatment, Dylan is happy and well on this trial, he has a good quality of life and is not hospitalized.
I will try and explain about 3F8, as I understand it, I hope I am accurate. There are 3 types of 3F8 antibodies, cold 3F8, heated 3F8 and hot 3F8, they are all mouse antibodies. The cold 3F8 is given best when there is minimal to no disease. They work by carrying white blood cells to the Neuroblastoma cells and in turn teach the body to destroy Neuroblastoma itself, decreasing the chance of relapse. Heated 3F8 works the same way, except that they are literally heated up and they have discovered that by heating up the antibodies, they can deliver up to 8 times the usual dose because the method of heating the antibody decreasing the pain allowing much higher doses to be delivered. Hot 3F8 antibody has a radioactive label or tag, which carries it to the Neuroblastoma cell, thus destroying the cell with the radioactive element. The trial that Dylan will go onto when it is released will be a phase 1 trial, consisting of these hot 3F8 antibodies along with another component that stops the blood supply to the cancer cells, an inhibitor. This is why hot antibodies are a better option for Dylan than the cold antibodies, because the hot antibodies will target larger amounts of bone metastasis.
With all 3F8 antibodies, patients can develop what is called HAMA. This means human anti-mouse antibodies, and is basically when the body recognizes that the antibody is that of a mouse rather than human, and rejects it. Patients are checked for HAMA by a blood test. So when treated with 3F8, you do not want a HAMA too early in the treatment. To prevent HAMA, Dylan will need to undergo high dose chemotherapy consisting of Cyclophosphamide. Because Dylan has not had chemo for so long, his chances of HAMA are very high, so they will give him 1 -2 rounds of high dose chemo prior to starting the hot 3F8. Of course this will in itself take at least 4 weeks with some hospitalization very likely. When they get an exact date of hot 3F8 release, they will start to prepare Dylan for the 3F8 therapy, with this chemo. If he does not develop a HAMA after the first cycle, he will continue for 4 cycles. If this decreases his disease, the next step would be cold 3F8 antibodies, then regular radiation, the possibility of vaccine therapy if he is totally clear of disease and then home to Australia on oral Accutane. That’s the plan, it’s a long slow process but it’s also the best chance at beating this disease. As Cetuximab is not available in Australia, we do not have the option of returning home until the hot 3F8 is released. Dr Modak was very impressed at how well Dylan is, everyone keeps commenting on how different he is since he first arrived here in New York.
You can also take this link to read up on 3F8 Monoclonal Antibodies
We met up with our friend Mike from New Jersey, he was in clinic for routine scans. He has put on weight again and looks so well. Mike finished his treatment last year. We also visited Dylan’s new friend Doug in the POU. Doug had his 2nd surgery on the other lung and now has 2 scars on his back, which he says is where they removed his angel wings! Hopefully Doug will be discharged today or tomorrow. Our friend Nick is also doing really well and hoping to start 3F8 soon. He is having all his scans and procedures this week and the results will determine if he can start 3F8. Nick has responded really well to therapy so far, he is a real inspiration.