Loaded for Bear

Friends and Family,

Is it that time again already? Yesterday we met with my oncologist in San Diego for the clinical trial, and of course to get scan results. 

It has been 13 months since I started on AZD9291. What a terrific run it has been! There was “massive shrinkage” – of the cancer – in the first six weeks of treatment, and then no change ever since. So it wasn’t a surprise when we met with my oncologist yesterday, and he told us…

The cancer has not grown! Yahhhhhhhhhhhhhh!

After the first few months on this treatment, I started asking the question that everyone in this situation wants to know: What happens when this treatment stops working? Every time we’ve had this discussion, Dr. Patel has waived his hands, smiled, and said, “You don’t need to worry about that. There are LOTS of options that will be available when you need them!” 

That all sounds great, but I have been around this block too many times to bet my life on it. “Don’t worry, be happy” makes a great song, and it’s a great way to live your life, but it’s not the best way to approach treatment when your life is on the line. 

I was particularly motivated this time because I have been watching my friend Craig, who is in the same clinical trial as I am. His cancer began progressing many months ago, and he hasn’t been offered a good alternative to chemo up to this point. I know that when I have been in Craig’s shoes, meaning each time a treatment has stopped working, all my careful, methodical thinking goes out the window and I get desperate to grasp at whatever treatment is in front of me NOW. The closest comparison for those of you without cancer would be job hunting: Doesn’t every job look a lot better if you are already unemployed? 

So this time, I came in loaded for bear. MUCH more politely phrased than this, I told him that “it all depends” wasn’t a satisfactory answer. I told him that I KNOW we’re going to have to genetically test my cancer when that time comes to see what treatment might be best, but what does his decision tree look like?

He must have been expecting the conversation to take a turn in this direction, and he was happy to go down this path. He started out with those words of hope that are sooo encouraging these days: “If you asked me three weeks ago, I would have given you a different answer. There’s a new treatment that has just come out in clinical trial." That new treatment is a drug called EGF816.

Of course, I immediately started reading up about this third-generation targeted genetic treatment. It works well for EGFR mutations after T790M becomes resistant to treatment. So when AZD9291 stops working, the next generation is upon us!

Another option is to combine this third-generation drug with Tarceva, the first generation targeted treatment. You know how grandparents and grandchildren sometimes get along better than the sandwich generation does with either their parents or their children? Turns out it works that way for genetic mutations as well! This is exciting stuff!!!!!!!!

Dr. Patel backed me up a couple steps, though. He told me that the FIRST option isn’t to switch drugs, because when AZD9291 stops working so well, the cancer still progresses pretty slowly. The treatment of choice is likely going to be radiating a few spots in my lungs if they start showing a little growth. He called it “spot-welding,” which is pretty descriptive. So that is MORE good news: If/when my AZD9291 stops working so well, it will be slow and gradual. That buys MORE time for MORE options. I love it!

Another option will be to try immunotherapy – drugs that boost the immune system. At least one of them, Opdivo, is already on the market, and there are two others in clinical trial (Phase II/III). A good number of people who responded to AZD9291 and then went on Opdivo had fairly serious side effects, so we’ll have to weigh that option when the time comes.

Keep in mind that, up until a few years ago, no new treatment options had been discovered for five decades. Now, I have been on three new drugs that didn’t exist when I was first diagnosed nine years ago, and there are many more in development. This is all good news piled on top of good news as far as I am concerned. This is all great news, and it brings up something I’ve been happy to spread for a long time:

Now, where would you guess I found this sign of hope?

In my oncologist’s office, of course!