Decisions to Make

At our Thursday clinic, Dr Oehler was full of new ideas on how to treat Tyler's disease.  As this was one of the things we have been praying for, I am happy to share the blessing with you.  She recently traveled to Barcelona to speak at the European Hematology Association conference, so she was able to talk about Tyler's condition with leading experts from around the world.

One of the contacts she made was with the folks from Ariad.  It sounds like the next phase of the trial will be up and running in both Portland AND Seattle this fall.  If Tyler's health holds until then, we think he will be a good candidate for the trial at that time.

She also indicated that Pfizer was willing to offer Tyler a spot on a trial that they are sponsoring.  We had some concerns about this path because, while the drug looks like an interesting possibility, Tyler would be the 7th human to take it.  As they are currently testing for toxicity in humans, they are starting at very low doses and working their way up gradually.  With his disease being so nasty when he stops taking his nilotnib, I get nervous about the idea of Tyler stopping that drug for any period of time.  The discussion about this possibility did help me to understand a lot more about how drugs work their way into our pharmacy.  We'll have to talk about that more in a future post.

A final option that we discussed was the possibility of a cord blood transplant.  We had considered a 2nd transplant (with Tyler's mother as donor this time), but have had concerns about whether the disease would again evade the graft.  In addition, they estimated that the chance of success (defined as eradication of the disease) was only 10%.  Since we know that the transplant presents several risks and lifestyle adjustments, we have been weighing that option against our desire for good quality of life.

The doctors are suggesting that a cord blood transplant might have a better chance at success, as they can actually choose blood with mismatched HLA markers and try to get a stronger graft versus host response.  Also, many people have donated the cord blood from their child's birth to the registry and we have access to those within a short window of time.

We have decided not to move on any of these options right now, but are biding our time until the fall.  Hopefully, Tyler can enjoy most of the of summer and have good health until then.