The past few weeks have also been frustrating because our clinic visits felt unproductive and unnecessary. Questions about upcoming treatment weren't being answered by our local oncologists saying it was San Francisco's call and the BMT (bone marrow transplant) team was saying they were no longer really in the picture since William is almost 3 months post-transplant and we hadn't met with our SF oncologist yet to consult and consent for the next phase of treatment. With multiple different treatments in both Sacramento and San Francisco, we've been under the care of four different teams of doctors so it sometimes gets complicated keeping track of who dictates what. We've recently felt in limbo, not having a clear plan in place, yet knowing more treatment was coming soon, and feeling glad, in a weird sense, that no one seemed very concerned about William's course of treatment. To us that means he's become a boring case. And that's a good thing.
Today, the much anticipated meeting with Dr. DuBois, our SF oncologist, to discuss the antibody therapy finally happened. Ryan and I walked out of our meeting with him with an overwhelming sense of peace, happiness, and direction. We have answers and a plan and most of all, a doctor who said he's taking charge of William's care starting today and he would take care of notifying all parties involved. William can stop taking 2 of his medications, he doesn't have to go to clinic visits for a couple weeks, I can stop drawing blood for labs and driving them to the hospital twice a week, and all the scans and test will be scheduled and completed in SF in a couple weeks, right before treatment begins. Life just feels slightly simplified for the next week or so.
What is the next course of treatment?
- Chimeric Antibody 14.18 (Ch 14.18) with GM-CSF, IL-2 and Isotretinoin
- It is a clinical trial for high-risk neuroblastoma children which has been going on for awhile and is now waiting on FDA approval.
- It is now the new national standard of treatment for high-risk neuroblastoma patients following bone marrow transplant and radiation.
- The antibody (Ch 14.18) and Isotretinoin are given in series over the course of 6 months.
- Standard treatment is to take the drug, isotretinoin (Accutane or 13 cis retinoic acid), by mouth for 6 months.
- A recent study compared the new experimental regimen (antibody therapy) to isotretinoin alone and found that the experimental treatment worked better than standard treatment to help get rid of any remaining neuroblastoma cells.
- Two years after treatment, 66% of patients who received the antibody therapy were alive with no signs of cancer, compared to 46% of patients who received the standard treatment.
- William's disease is hard to treat and often resistant and needs very aggressive treatment. His diagnosis of "High-Risk" neuroblastoma is in part due to his age at diagnosis (rare to be over 5 yrs old), it had already metastasized (spread) at diagnosis, and during the course of treatment, the cancer cells were resistant, needing 2 additional rounds of chemo and MIBG therapy and cancer cells were still present right before transplant.
- The technology and accuracy of the tests and scans to detect cancer cells has limitations and may miss some microscopic cells. One active cell is enough to grow the cancer again. This treatment focuses on the microscopic cells (minimal residual therapy).
- The human immune system contains many different antibodies to attack germs, bacteria, etc. However, because cancer is produced by the body, it does not recognize cancer cells as "bad".
- Ch 14.18 is a monoclonal antibody, meaning a protein made in the lab, designed to attach to specific targets on cancer cells. This particular antibody is part mouse, part human. Yes, we agree it sounds crazy! We are promised William won't grow a tail or whiskers.
- Ch 14.18 is designed to attach to neuroblastoma cells. When it attaches, the body's immune system is stimulated to attack and kill the neuroblastoma cells. (It flags the neuroblastoma cells as "bad")
- William will be infused with this antibody for approximately 10 hours a day for 4 days at UCSF. This will occur approximately once a month for five months.
- The cis-retinoic acid will also be administered during these months according to the trial instructions. (I'll spare you the boring details).
- The sixth cycle will only be the oral cis-retinoic acid which is administered at home.
- There are lots that are similar to all the side effects he's experienced through this whole process. (again, I'll spare you the long list of likely, less likely, rare but serious).
- Pain, an internal aching, is the most common with the antibody infusion and it will be carefully monitored with the aid of a PCA button (patient controlled analgesic). If the pain is too much or other side effects arise, the infusion will be paused until the pain is properly controlled. Once the infusion is finished, the pain immediately ends.
- Next round of hospitalization begins May 2nd.
- William will be able to go on our annual family reunion to Balboa/Newport Beach in June!
- He'll have to stay out of the water, sand, and sun, but we'll all be there together, on vacation!
- He'll be admitted back to the hospital the Monday after we return.
- Ryan and I feel confident and peaceful about pursuing this course of treatment. We feel blessed and fortunate to have these cutting edge treatments readily available to us within feasible proximity to our home. In the end, we will know we treated this cancer with everything available from the beginning.
- We are so grateful for the brilliant minds that continue make progress on the neuroblastoma front and the brave children that fight the hardest battles.