Wow! What a week! A lot of life impacting decisions have been made and I feel pretty good about them. We're fortunate that we've had access to quite a lot of resources to help us with making the decision - the internet, parents who went through a similar experience, our doctor at Stanford and our therapist. I'm just amazed how everything finally pulled through.
In the end we decided to continue treatment for Jonathan's cancer and hopefully during the course of this treatment his cancer will get cleared. When the re-staging tests were done - three out of his four tests came back negative. The CT scan, the bone scan and the MIBG scan all came back negative. The bone marrow aspirate came back positive and in retro-spec we are lucky that it did come back positive. The challenge with performing the bone marrow aspirate is that when they take a sample - since the amount of cancer cells that Jonathan has is small - the sample area could easily have been an area that was NOT infected and his test results would have come back negative. The problem with that is that Jonathan would have been (falsely) de-cleared free of disease when in actual fact he would still have disease.
Although we would still have some treatments to do to finish up Jonathan's treatment (if he was cleared free of disease) - we would not have looked at immunotherapy due to the fact that it is a painful treatment option. By knowing that he really still has disease - then it allows us to be more aggressive now rather than later.
So - we decided to do the immunotherapy. We had three choices - but only two at Stanford. We had the 3f8 - which is not done at Stanford, the ch14.18 and the hu14.18. All three immunotherapy treatment options involve Jonathan getting a mouse antibody that has the ability to bind to a chemical - GD-2 - on the cancer (neuroblastoma) cell. Then his body's immune system receives additional drugs so that Jonathan's antibodies start attacking the cancer cells. Without the mouse cells binding to the cancer cells - there is no way for Jonathan's antibodies to attack the cancer cells. One of the big differences between each of the three studies is that the 3f8 consists of cells that is 100% mouse, the ch14.18 cell is 75% human and 25% mouse, while the hu14.18 cell is 98% human and 2% mouse. Another difference is that 3f8 is old school technology (developed in the 1970's), while ch14.18 was developed in the 1980's and the hu14.18 was developed in the 1990's.
Since we decided to do the immunotherapy our choices were really narrowed to either ch14.18 or hu14.18 - since the benefits for going to SLOAN for the 3f8 wasn't strong enough. We had a initial problem in that Jonathan may not have gotten to do the ch14.18 but we found out last night that we have the green light. The original challenge was that in order to do the ch14.18 the patient must sign onto the study before 100 days after stem cell transplant. Also - the patient must be finished with radiation treatment and repeat the re-staging tests at least five days after radiation treatment. The problem was that Jonathan's 100 days is on 12/2/05 and his radiation therapy doesn't end until 11/18/05 - so the first day he can start his re-staging tests is on 11/25. The challenge was one week to schedule all the re-staging tests might have been difficult - but in the end it all worked out.
If we couldn't have gotten on the ch14.18 study then we would done the hu14.18 - which doesn't have the time restrictions. The reason we wanted to do the ch14.18 study instead is that this study actually alternates between two studies - the immunotherapy and using cis-retonic-acid. With cis-retonic-acid - this therapy focus on differentiating the cancer cell - meaning the cells are 'matured' so that it cannot reproduce anymore.
Alright - I've spent an hour writing this - so I'll call it quits for today.
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