Bad news: Tarceva stops working

It’s now early June. My April scans looked clean and things were OK. However, shortly after that, I started feeling symptoms coming back.

Not as serious as when I had to be hospitalized, but they were definitely creeping back. Shortness of breath, pain when inhaling deeply. I figured that the inflammation was coming back and thought maybe I should be back on prednisone again. My doctors had slowly weaned me off of it.

On May 31st I had my regular appointment and bloodwork with my oncologist’s nurse practitioner. A couple days beforehand, I told my pulmonologist about it and told her that since I would be at the cancer center soon, I could get an X-ray if she wanted to check things out. She agreed it was a good idea.

So, I had the x-ray in the morning and proceeded to the appointment with my NP. We had a routine appointment. She listened to my chest and noted a small difference in how it sounded. She consulted with my pulmonologist, who saw the x-ray and then ordered a CT scan.

This was worrisome, because I wasn’t due for another CT until July. So I had my scan a couple days later. Earlier this week, my oncologist returned from a seminar and saw my scan and called me.

The Tarceva is losing effectiveness. The cancer is creeping back in my lungs. There is also a tiny spot on my liver now which may be further spread.

So, we will have to proceed to a second line of treatment. Next week I will have a special blood test looking for the T790M mutation.

Chances are, I will test positive for T790M, and that is our preferred outcome. If so, I will switch to a different medication called Tagrisso, which is also a pill. The side effects are usually less severe than Tarceva. (And the side effects have been really bad lately).

If the T790M test is negative, we will probably add the chemotherapy drug Avastin to my regimen and stay on Tarceva. Clinical studies have shown that in EGFR+ patients like me, Avastin can significantly extend the length of time that Tarceva works. I would get IV infusions of Avastin every three weeks.

We are obviously very disappointed that Tarceva didn’t work longer. I’ll update folks when we have the results. It will be a couple of weeks.

In the meantime, I also have developed a pleural effusion, which is fluid that builds up in the lining around the lungs. It is contributing to my breathing symptoms. So I will have it drained via thoracentesis in a couple of days and it should make me feel a lot better.