It’s been 3 years and six months since I started Cabometyx. The medication that not only saved my life, but gave me time I had no right to expect or deserve, if you asked papillary renal cell carcinoma.
I joined the PAPMET clinical trial as one of its very first patients, and was randomly assigned Cabometyx out of four different options. It had just been approved as an option for metastatic kidney cancer patients by the FDA just a month prior to my diagnosis, and there was no significant data yet to see if it would work for patients with my rare subtype.
Today, I become one of the last patients to exit the study. Voluntarily. Because after almost 3 years of consistent CT scans showing no evidence of disease (aka no cancer remaining), my oncologist and I have determined that it’s time.
As much as Cabometyx has been a miracle drug for me, it’s not come without significant costs. I’ve dealt with side effects including but not limited to mouth and tongue sores, hand and feet blisters, insane GI issues like nausea, blood clots in my legs, thyroid dysfunction, high blood pressure, fluid retention, and indescribable fatigue. I’m basically a walking pharmaceutical commercial – you know, the part where the Voice of God starts talking really fast over all the side effects that could kill you? That’s me!
I often look mostly fine, and some days are better than others, but Cabo has absolutely taken a toll on me. After my scare with a pulmonary embolism in November, Dr. V began urging me to consider coming off treatment. Not only do I have all these side effects, but this type of drug can do serious damage to your organs long term. Not to mention, there’s just not enough data yet on extended use of targeted therapy and immunotherapy drugs…because they’re just so new. There aren’t any 25+ year survivors out there to tell the tale. Yet.
So, after giving this a LOT of thought over the last few months and doing plenty of crying, soul searching, meditating and praying, I decided I agreed with Dr. V. It is time to give my body a break – from the Cabo and from the copious amounts of radiation exposure I’ve put myself through over the last almost four years. Going off study means Dr. V can be more flexible with my scan schedule, so I’ll have one more three-month scan in June, and then hopefully I can start doing 4 month intervals.
So, what happens if it comes back, right? It’s the big pink elephant in the room. Dr. V and his PA both feel confident that I can get right back on Cabometyx and it should do the trick again. But, Dr. V said when we talked about this six weeks ago, “If it comes back. Who knows, Laura. You could be one of those rare durable responders. I certainly never thought we’d be having this conversation a couple of years ago.”
I’m not going to pin my hopes on it just yet. Cancer has robbed me of the ability to think and dream too far ahead. But, damn if hope isn’t that little flickering light in the tunnel.
When I started Cabometyx, I thought I would be thrilled if I lived to see another September. When I hit NED, I thought I would be ecstatic to stay NED for a year. I never allowed myself to think about ever coming off treatment, unless it was to switch drugs.
But now? No treatment? Just…living my life?
What a world. What a new chapter. What a new woman I am.