I’m leaving New York Wednesday April 22 for 10 days! I have to return to New York May 3-9 for her first round of antibody IV3F8 treatment. I heard it is quite painful and there could be a lot of unexpected complications that accompany the treatment therefore Ralph is traveling with me. I’ll keep everyone posted.
This trip has been by far the most complicated, just because I think I have changed my flight at least 100 times by now-Jet Blue is getting tired of my calls! I thought that being on the 8H9 antibody would be very easy and my stay in New York would only be 2 weeks to receive the last 2 doses of antibody treatment, however again things have changed. When we checked her platelets they were extremely low. When we began treatment they were 200 and have dropped to 15. Platelets determine if we are continuing antibody treatment 8H9 because it is linked with radiation and since they are below 50 we can not continue. We will save the last 2 doses for the future (hopefully we will never need them).
I received the results from the spine MRI, the areas of enhancement were compared to the last MRI scan that was done last month. The findings were that the enhancement areas remained the same, and one spot actually became smaller in size without treatment. The antibody 8H9 that Paris received did not affect these areas out side the spinal cranial fluid. They again resemble enhancement from post surgery and/or radiation, less likely from disease. They will continue to monitor those sites closely.
I am still waiting the results from the brain MRI but as it is often said around here-no news is good news so I would like to hope that that is the case for us. I will await the results and share them with you as soon as I know. The antibody 8H9 that Paris received does target the cranial/spinal fluid which hopefully will give us good results in the brain area.
Her platelets are low, when tested on Wednesday they were 40 and today they were 24 so they are dropping. A few possible reasons for this could be from the 8H9 treatment or because she has a bit of a cold, which could suppress her immune system.
Platelets determine if antibody 8H9 can continue because it is linked with radiation. If her platelets do not recover on her own then we will have to do antibody IV 3F8 which does not contain radiation and targets everything outside the cranial/spinal fluid. This type of antibody is much more painful than 8H9. It was on our list of treatment, so we would just be doing this step earlier than planned. The other 2 doses of 8H9 would be put on hold until her platelets recover.
Dr. Kramer would like to do bone marrow testing on Monday.
I’ll keep you updated but at this point all of this news is good. Thanks for all the prayers.