MD Anderson Visit 2

I feel like every time I go to MD Anderson I receive another piece of the puzzle. My appointment on Friday answered some questions, but the ultimate question of whether or not I have the t-315i mutation still hasn’t been confirmed. Test results have not come back as of Friday, the 27th. At my initial appointment, I asked my doctor if the tests for the t-315i mutation was subjective. I knew that it hadn’t been around for a while and a lack of uniformity in the tests even prevented the FDA from approving a Leukemia drug from going public in July. He said that the tests can be (subjective), but he looked at the lab that did my first test and said that they were a pretty reliable lab. So the chances are pretty good that I have the mutation. But they wanted to get a second opinion from a different lab anyway.

With the assumption that I have the mutation, my doctor already has a plan in place. I will be a participant in a clinical trial that will start in 2-4 weeks. The drug doesn’t have a public name yet, but is referred to as “ap24534”. It’s so alphanumeric that I could use it as my password if I wanted to. If it works, maybe I will. If it turns out that I don’t have the mutation, then I will go back to using a second generation Leukemia drug (Sprycel or Tasigna). I don’t really see that happening, but it’s good to know.

There has been one other clinical trial for ap24534. The response rate was in the 60th percentile. Essentially, there’s a chance it doesn’t work out, but we’ll have to cross that bridge if we ever get there. I’m now just focused on how this medication works and praying that it works for me.

In an earlier post, I wrote about how the mutations in my cells were preventing Gleevec from working properly. The ap24534 med works to completely bypass any mutations formed by the Philadelphia Chromosome. For example, the mutations that have taken place act as if it would if someone made a few extra ridges in a house key. If that happened, the key wouldn’t be able to unlock the door, no matter how hard you tried. This trial drug is like the master key solution. It doesn’t matter how many “ridges” or mutations occur, the hope is that the ap24534 trial med will still bind to the protein that creates Leukemic cells, thus making my body produce normal white blood cells. This is the hope. This is what we pray for, not only for me, but for everyone else who has to battle this cancer. If the trial is successful, there’s a chance that the FDA will approve it to be a commonly used drug for those resistant to the first and second generation Leukemia drugs. The pharmaceutical company behind the ap24534 trial is Ariad.

There’s good news beyond the growing optimism of a relatively normal life. If this medication works for me, then there’s a good chance that I will receive my medication free for a really long time, if not for life. Since I’m a participant in a study, I can stay in the study even if the drug is made available to the public. Those who participated in the Gleevec clinical trial are still getting their medicine for free. It’s not guaranteed, but my doctor said that they really push for their patients to have this advantage. After all, if it weren’t for those in the clinical trial, the medicine could never be approved by the FDA and enter the market. The pharmaceutical companies understand this.

This is a six month clinical trial. If things don’t look good in six months, then we’re going to start looking for bone marrow donor matches while simultaneously looking at a different trial to put me in. There are currently three other clinical trials being researched for Leukemia patients at MD Anderson. That’s good to know, but I am praying that I won’t need to be a part of any of them.

I have some more to blog about, but it’s late and I have a long day tomorrow. I’ll write as soon as I can.

Posted in: cml

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