Well, we’ve been discussing what our next steps should be.  Maya has been on Irenotecan and Tamodal for 10 cycles this year and generally speaking, we were slotted for 12 rounds. If Irenotecan and Temodal were shown to regress the disease, it may have been used longer.  However, for Maya, and thankfully, it kept the disease at bay.

Thankfully, this year has been a lot less eventful than the last.  I guess our lack of blog posting is an indication to these non events.  But, now we’re coming to the end of the Irenotecan / Temodal run and we need to figure out what to do next.

So to recap, this year was about finding what we can do next:

  • Irenotecan / Temodal for maintenance.
  • Washington personalized medicine trial.  Although Maya was the second child to sign up, Maya was not able to proceed as we could not access the viable neuroblastoma sample through biopsy.
  • Fenretinide study.  Fenretinide is a derivative of cisretinoic acid (which is a derivative of Vit-A) It has shown to mature neuroblastoma cell.  Although fenretinide study was an option for us, we decided against it.
  • MIBG 131 clinical trial.  We knew CHOP had one and did consider it last year.  It turns out that MIBC-131 is offered in Montrial.
  • ch 14.18 IL2 study.

We decided to proceed with MIBG 131 study and spend yesterday travelling to Montreal for our initial consulation.  We left toronto rather early, around 6 AM and got to Montreal by 1 PM.    The initial consultation was pleasant and Saint Justine, the hospital where MIBC therapy is offered was pleasant.

In brief, MIBG can be thought of as glue.  On one end, you attach the Iodine-131, and the other end attaches to the neuroblastoma cell.  Since Iodine 131 is radioactive,  the idea is to radiate and kill the neuroblastoma cells.

The therapy is mild in comparison to the other therapies that Maya had.  Basically, she will get a single injection of the radioisotope over two hour period.  And she remains in bed for approximately 5 – 7 days, after which we all get to go home.  Some random details are:

  • There is a special lead room which Maya must stay in.
  • The first 24 hours, Maya will be in the room by herself.  Parent may enter the room for short periods of time.
  • Subsequent days, we can be in the room but we must stay behind a lead barrier and we must stay some specific distance away from her.  Each day, we can move a few feet closer.

Other than that, that’s pretty much it.  Some concerns for us are:

  • Maya has a single kidney.  It may get a little irritated. So, we want to keep an eye out for that. Most of MIBG is removed through the kidneys.
  • Maya had VOD and so, we want to keep a close eye on her liver.  There may be some irritation, but these irritations generally tend to be transitory.
  • Maya will need to get heavy doses of “Lugol”.  It’s just iodine, for her thyroid gland. Since thyroid gland typically has a heavier concentraion of iodine, the idea is to have regular iodine in her thyroid over the radioactive iodine.
  • Radioactivity is also myeloablative, so we can expect  her “counts” to drop, mostly in the plateletts.  So, there may need to be a transfusion or two, subsequently.

So… that’s about it.  We are a “go”.  So, we are now in the process of dotting the i’s etc.  That is, we need to go through a set of tests to make sure that Maya’s organ functions are good enough for the therapy.

If all goes well, we’ll be in Montreal for a week or so, late January for this therapy.  We’re hoping that this therapy will reduce Maya’s disease.  And subsequent to this therapy, we then will apply for the ch 14.19 IL2 study.

It turns out that what the plan is now, is what we, pretty much would have ended up with, had we been able to finish the “front line” therapy a year ago.