Treatment Started and Scan Updates

Jonathan finally started the Accutane treatment! He started on Wednesday night, to be precise, and has a prescription for two weeks, after which lab work and a physical is done to ensure he is handling the side-effects and is receiving the correct dosage. I'm just happy he finally started something, although I'm a little worried about continuity of care when we move from California to The Netherlands. We still have, at least a month before we need to figure that out, so hopefully the transition will be painless (from a red tape perspective).

We also got the results from Jonathan's MIBG and PET scans, and both came back negative! In one breathe, this is good news and I could just imagine that breathe is the exhale. In the other breathe, in this case the inhale, I'm cautiously optimistic because these two scans are not sensitive enough and we're not sure whether the PET scan is a true indicator or not, i.e. is it NB hot? Regardless of all the doubt, it is good to know there is currently no significant tumor in his body (at the moment).

When I look back to when we discovered his third relapse in June of this year, and the realization that the MIBG scan is not sensitive enough, I still remember all the worry and anguish on whether this 3rd relapse was going to follow the normal path or continue to be the anomaly that Jonathan is lucky to have, i.e. slow growth. A relapse with Neuroblastoma is usually quite aggressive, and I still remember the two fathers in Southern California who lost their sons in their battle with Neuroblastoma. Jonathan has and continues to be an anomaly with regards to this disease and I'm hoping he continues to be, especially in a good way.

In the early stages, we used to wonder how long we would have our son with us, usually measuring in single digit years. Now we feel his status has moved to more of a chronic case, in which it will always be part of his life, and we wonder whether Jonathan will outlive us or we would outlive him. For the moment, it's good to be in the position we are in, and we are definitely enjoying the "brief" respite.

PET Scan Scheduled

We learnt on Thursday that Jonathan's PET scan is scheduled for next week Wednesday. Unlike the MIBG Scan, which is either a two or three day affair, the PET scan is a one day event. Jonathan will get the contrast or some type of isotope at 1 PM, and the scan follows immediately at 1:30 PM. I'm not holding my breath that the PET scan will be extremely helpful because either news is a mixed blessing. If the scan comes back negative, we don't know if that means there are tumor cells that are undetected by the PET scan, or whether the tumor cells are detected and there are no more tumor cells. We don't (currently) have a way to tell whether there are any tumor cells, my suspicions are that they are probably too small.

Jonathan had another round of MIBG scans this week, i.e. on Thursday, September 10th, and my expectation, like the February scans, is for the results to come back negative. If the results (from the MIBG scans) do come back positive, then this would be good data to help us figure out whether the PET scans are a useful testing procedure or not.

Whew! So I go back to my earlier statement, any news we receive will be a mixed blessing. :).

We meet with the medical team next week Friday, September 18th. I'm hoping the meeting will be to review the results of both scans AND also start the 13-cis-retinoic acid, aka Accutane treatment. Here is looking forward to another "adventurous" week :).

Preparing for Accutane Treatment

We had the consult with Jonathan's oncologist on Wednesday afternoon. I couldn't help but feel that Jonathan wasn't a big priority for them, but I sort of understand why. Jonathan's stuck in this in-between state of not having enough (detectable) cancer for them to come up with a definite plan. Using chemo is not an option, a plan we both agree on, because it's like pulling out the big guns for something that truly appears localized in a very small area. It also means that a lot of phase 1 trials aka experimental treatment are not an option because a prerequisite is having detectable tumor, which he wouldn't have now that the lymph nodes has been removed from his neck region.

The "good news" is that he gets to start 13-cis-retinoic acid, otherwise known as Accutane.

• Overview on Retinoid Therapy
• Detail Information from a Medical Journal

This has been a drug that Jonathan has taken in the past, i.e. when he was first diagnosed back in 2005, and this treatment and the follow-on treatment with Fenretinide were the drugs responsible for Jonathan being declared in remission for the next 5 years, i.e. 2007 to 2012. The plan is for Jonathan to start Accutane in the upcoming weeks, it takes a while to get all the paperwork completed as Accutane / 13-cis retinoic acid is a controlled substance, due to the recalls associated with (among other things) depression and suicides, as this drug was also used heavily in the treatment of acne in teenagers. Fortunately, as Jonathan has taken this drug in the past, he is already registered with iPLEDGE so hopefully the "red-tape" doesn't take too long.

• Information on Accutane
• Information on iPLEDGE

Other than treatment options, we also discussed detection options as well. I was sharing my concerns that the MIBG scans are not a good way to detect tumor cells, especially as we saw in 2014 that the CT scans were showing tumor growth. It wasn't until 6 months later when the tumor got large enough for it to register as tumor cells in the MIBG scans. Thus, when the MIBG scan came back clear in February 2015, I didn't put "2 and 2 together" to realize that we may have gotten a false negative.

During the consult, I learnt that there are some Neuroblastoma cells that are "MIBG cold" and the only other, possible, detection method is using a PET scan. We're going to try a PET scan as well, to see if the MIBG cold Neuroblastoma cells are responsive to the PET scan, but it's not a method we're hoping for a lot of success. We believe Jonathan had a PET scan when he was younger and it was unsuccessful - but not 100% sure.

Other than that, we got some education on medical terminology and the human body. Apparently, just like the blood system, the lymphatic system is part of the circulatory system in the body. Apparently tumor cells can spread via both systems. Somre more reading on the lymphatic system can be found on Wikipedia's website.