One of the hardest things for me has been not able to explain what the heck is going on. I 'failed' Gleevec with no mutations found, and then I am having little effect with Sprycel. It's been extremely frustrating to not be able to explain what was going on. I have asked myself countless times, would I be better off going the transplant route, rather than the Ariad study, since we had no documented evidence that Ariad would be able to help me. I suppose because of that situation, starting the process of preparing for a transplant has been easy to accept, since I have no idea of what Ariad could do for me.
On Monday, I got a call from Dr. P, and he left me a message that he would try to reach me that afternoon. I’ve come to learn when a Dr. calls you and leaves a message with no content, it’s never good news. I learned that from my day of diagnosis, when my dr. asked me to come back the following day. I’ve also correlated the seriousness of the news with being able to discuss over the phone, or have to go in person.
He called back a little while later, and the news he had was related to my mutation report. For those who may remember, a mutation report was done back in June after failing Gleevec, and no mutations were found. This time, it came back and it showed that I have the infamous T315I mutation, which is known to resist both Gleevec and Sprycel (and Tasignia as well). This is probably the most known mutation of CML, since it’s documented for quite some time, and no drug to date has managed to show good results against it.
Now we know why my CBC’s were very good, but my Cytogenetics were not improving. As Sprycel/Gleevec were killing off the non-mutated leukemia cells, they were being replaced by the T315I cells which the drug was not able to latch on to. This resulted in over time the percentage of T315I cells becoming more than 20% of the overall number of stem cells (which is when they typically show up in a mutation study). This replacement of bad with worse cells has been happening over time.
This helps address a nagging question, would increase dosage of Gleevec worked for me, would increased dosage of Sprycel do the trick, or switching to Tasignia ? The answer for all is no. It’s clinically shown that none of those will address the T315I mutation. In fact, without Ariad, there would only be one option on the table, a Bone Marrow Transplant.
So, in a way, this is good news. I am hesitant to share too much about other people’s result on Ariad and T315I, but it’s safe to say that I am now a better fit for Ariad than I was before, since that drug is designed to tackle the T315I mutation as its primary objective, among others. In fact, the press release in July calls out the effectiveness on that mutation.
So I remain cautiously optimistic, I have been told that they should be enrolling me no later than the end of this month. SCCA and OHSU is coordinating my treatment, and I just learned today that they want me to discontinue Sprycel to allow my numbers to rebound before starting the new drug. It does mean a month in Portland, so I’m reading myself on all levels to be down there and focus on what I need to do. Now it’s game on, we know within 3-4 months, there will either be good news on Ariad, or transplant will be the plan of record.
Thanks again to Mandy/Tyler, Amy and Beth and Bobby who have been a wealth of information and someone to lean on. My aunts have also as usual been able to provide encouragement and support that only they seem able to do.