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.