Piqray - My New Treatment Option
In May of 2019, Piqray (aka Alpelisib) was fast-tracked by the FDA and in August of 2019, I was prescribed it, after experiencing a mild progression after two (2) years of taking Ibrance. Piqray targets the PIK3CA mutation, which my cancer has, and has been touted as a breakthrough potentially on the same level as Herceptin was for HER2+ patients. Is it? I'm not sure anyone knows for sure yet, but the early results are looking pretty significant, I'm told.
Side effects of Piqray
It was rough adjusting to the side effects of Piqray because so few people have ever taken it, so I didn't have a lot of input from medical professionals or other patients, and because I’d gotten comfortable with managing the side effects of Ibrance. There was a fair amount of trial and error, some still ongoing, with medication and other remedies to manage the side effects. Also, I’ve had to educate all of my providers about the medication since (outside of my medical oncologist) none of my doctors had even heard of it. Piqray is the first drug in its class, not unlike Ibrance, which was the first drug of its kind to go on the market back in 2015.
I appreciate that the FDA has the mechanism to ensure that promising drugs get to patients that need it quickly. The downside is that the supporting materials for patients and doctors aren’t always as complete as they could be. Doctors unfamiliar with the medication have not always prescribed the right medication at the right time to manage the side effects. I know this because I’m in a Facebook group specifically focused on people taking Piqray. My doctors regularly ask me what other patients are saying.
The power of research
I’ve been lucky thus far that the new targeted therapies are getting approved just when I need them. Ibrance had only been on the market for a few years when I started taking it in 2017. Piqray is even newer and I had to have a specific mutation to qualify to take it. I don’t discount this luck, this right time, right place experience that has nothing to do with anything I did or didn't do.
These experiences, of having options when I need them, of having the ability to take advantage of new options as they arise, is why I advocate so much for research. Research (and the products of that research) is what has kept me alive for over 2 years since my diagnosis. I am alive because someone somewhere decided that a research project was worth funding.
Research saves lives
I can’t think of a clearer reason, a clearer confirmation that research really does save lives, that more research is needed to keep saving lives and how important it is for everyone to advocate for more research. Given the time it takes for a drug to get to market (I’ve read as much as 16-18 years and millions of dollars), the medication I’m taking now has been the subject of a study for a long time. It is unlikely that the drugs being studied right now will be available for me since it takes so long to get from conception to market.
Sometimes it is a little sobering to realize that my efforts now won’t pay off for me and then I’m reminded that someone 15-20 years ago was probably advocating for more research and I’m getting the benefit now. Someone else paid it forward and now it’s my (your) turn.
What reservations do you have about getting into advocacy?
What kinds of advocacy are you good at?
Do you want to learn about advocacy options?
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