So we had only 1 day left and her heart continues to beat irregularly. That’s a one way ticket to ICU for more tests. Stuck in New York AGAIN!!! Last dose of IV3F8 Postponed!!!! They decided to put Paris through surgery to pull the metaport to see if the cathader impacted the heart beats, but it didn’t and now Paris is stuck with an IV. She’s recovering. I’m very nervous to learn the outcome of further heart testing. Please keep her in your prayers.
We returned to New York on May 3 for the IV3F8 antibody treatment. Paris began IV3F8 to target any microscopic or remaining tumor neuroblastoma cell within the body. This treatment is scheduled for 5 days out of the month. The doctors want to get at least 4 rounds in, assuming she doesn’t become HAMA positive beforehand. I had prepared myself for the worst as the stories vary amongst people who have received it. Its very difficult because as a parent youa re told that you want the child to experience pain which is an indicator that it is working. As Im talking to the doctor I’m asking if Paris is experiencing the most pain possible and then wondering about the context regarding what I’m saying. What parent asks if their child is having pain because they want them to? Its a strange position to be in. The way the process works is that the neuroblastoma is within the body and is seen as part of the body, the white blood cells do not attack it becasue they see those “bad” cells as normal. The IV3F8 antibody is derived from mice so those antibody carry a marker to cells attach themselves onto the Neuroblastoma cells. The white blood cells see those antibody cells as foreign and since they are attached to the Neuroblastoma cells the white blood cells attack them. The white blood cells are stimulated by the daily shot that I give her GMCSF.
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.
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We finally made it to the antibody stage!!!! The antibody that Paris is receiving is 8H9 and is tagged with radiation and only travels within the cranial/spinal fluid to target any microscopic neuroblastoma cells that may remain. 8H9 nis only allowed to be given a total of four times. We started the antibody treatment 8H9 on March 3. The first dose was a test dose. It was 2 mCi. The next two following days March 4th and 5th Paris had her ommaya tapped and cranial/spinal fluid was drained and tested. Pet scans followed to ensure the flow of the antibody. The scan showed that the antibody engulfed the entire area, with the thought that if any cells remain they would be surrounded and attacked by the antibody. She received her second dose March 10. This dose was much stronger 34 mCi and classified her as radioactive. We had to spend the night in isolation in another hotel room. The following two days she received a crainal/spinal tap to check the fluid and test teh level of radioactivity. I had strick rules for this dose. An average adult is only allowed 500 m rem per year. Paris was giving off 190 m rem per hour, meaning that if I held her I would reach my legal limit within 3 hours. They told me that I must limit holding her for 30 minutes for the next 3 days, but if necessary can hold her more I would just be over my limit.
I was in clinic on Friday after I called everyone and obtained a copy of Paris’ report from her MRI brain/spine scan to read for myself. I noticed that on the report for the lumbar spine it had indicated that there was enhancement as stated most likely from post operation and radiation as stated, however then report also indicated that there was a discrete 1 x 0.6 cm enhancing nodule between T9 and T10. It states that the changes extend toward the neural foramen but do not enter the spinal fluid. The impression also tates posttherapeutic and new mild residual paravertebral disease. (in regular terms there is less than a centimeter of disease that they believe is still present according to the report in the spinal area) That was not relayed to me on Friday, possibly it is so small that they believe that it will disappear on its own and want to wait for changes so I sent the doctor an email questioning the report. A portion of my questions are indicated below…I will wait for a response and let you know..
I am glad to overall hear that the enhancement is only identified in the surgery sites and could be a result of post operative/radiation but just was concerned when the report identified dimentions and stated mild residual paravertebral disease.
Since this scan was compared to the one in January, whould I be correct that this nodule was not present before? Paris is scheudled to receive 8H9 in March. Am I correct in thinking that the antibody only affects the spinal fluid/canal, if this is the case and the nodule is located between vertebrae how will we approach treatment for that area. Would it be possible to intervene with something as she receives antibody? My concern is that eventually that nodule will enter the spinal canal, being that that area is the orginal tumor site.
We got the results today from Dr. Kramer and she stated that the MRI looks good and she was pleased with the results. She stated that there was enhancement in the sites that had post operation surgery. There were no other areas that indicated tumor other than the sites that had underwent surgery. The area resembles what she would expect post operation surgery enhancement to look like rather than tumor. I’m very excited about the results however always worry about the microscopic cells and possible active neuroblastoma within the area, but I’ll worry about that when I have too right now I have to take the positive information and take it for what it is, that it resembles post operation enhancement.