Sometimes You're the Windshield...

Friends and Family,

Sometimes Genevieve and I fly down to San Diego to see my oncologist, and we are full of optimism. Sure, there’s plenty of “scanxiety” mixed in because there is so much at stake, but, deep down, we get a good feeling that everything is going to go well. Other times, not so much. This was one of those other times.  

Dire Straits said it best in their song: Sometimes you’re the windshield, sometimes you’re the bug. You can find it here: Before I got these last scan results, I definitely felt like the bug.  

I have a cough that had been getting progressively worse for the last seven weeks. It got so bad that I was embarrassing myself at the movies.  I could just stick to movies like Star Wars: The Force Awakens and other nonstop action movies so that people don’t hear me cough, but that doesn’t solve the problem, does it? Even Genevieve was admitting that she was getting worried about my cough. Genevieve’s sharing this is actually really good news as far as I am concerned, because now I can share my worries with her, and she won’t deny that there is something to worry about. I won’t feel so alone with my fears. That is a really big thing for me. There is a place for affirmations, but there also needs to be a place to accept whatever feelings come up.

That doesn’t mean that we have to live in fear, but it’s OK to visit it once in a while. I’ve learned that I’m strong enough to let the fear in, and to know that it won’t overwhelm me. Eventually, the fear gets bored and leaves. Fighting fear sucks up a lot of energy, and only makes it grow stronger. If I don’t fight it, then the fear flows in and out, just like the tide. Each time I let it in, I am able to handle it a little bit better.

A side effect of having cancer is that any minor symptom, that people without cancer wouldn’t even think twice about, could be a symptom of something more risky for me. If I have a headache for three days in a row, I wonder if the cancer has metastasized to my brain. If my back gets sore, I wonder if the cancer in my spine is spreading. And if I have a cough, it’s hard not to imagine that the cancer is taking over my lungs. When that cough keeps getting worse… Well, then. Bug, meet windshield.

It turns out that this time it WAS a bug. More specifically, it was a cold symptom that wouldn’t go away all this time. My CT scans showed no growth of the cancer again! Genevieve and I went from elation, to exhaustion, and then back to elation again. Woohoo!

And after all of that, we went back to gratitude. I am grateful that the Tagrisso / AZD9291 is still working. I’m grateful that the clinical trial for the next clinical trial drug that could help me, EGF816, will be available through clinical trial at UCSD, though I don’t know the timing yet. And I am grateful for your love and support, which is surely keeping me alive.

I’m also grateful that, at least this time, I’m still the windshield.



*** A Special Request***

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I'm planning to attend LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. If I can raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations.

Proceeds from this fundraiser will benefit LUNGevity Foundation, the leading private provider of research funding for lung cancer. LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.

If you wish to donate, please go to my LUNGevity page:

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!