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!







New CT Results, and Requesting a Little Hope

Friends and Family,

My latest CT scan results are in, and things remain spectacularly unchanged. Can you see my smile from there? :-) I feel increasing gratitude after every scan, because I can’t count on this lasting forever.

I know this because the New England Journal of Medicine just published the Phase I trial results for AZD9291 (http://www.nejm.org/doi/full/10.1056/NEJMoa1411817). The average time people stayed on the drug before their cancer started growing again was 9.6 months. If my results are average, I have a couple of months before things change. I don’t plan to be average. I’m treating the stats like you would a pole vaulting competition. Somebody has to set the record. 

Ever since I ran into a guy at the LUNGevity Hope Summit who had been on Tarceva for eight years (roughly seven years longer than average – and still going), it has raised my level of hope.

How much difference can hope make? How much difference can love and support make? This is where I’m asking for your help.

Two things. First, I’m asking if you will send me your images of hope. In my last blog entry (below) I posted a couple of images of "Hope" that I found in Washington DC. I’m hoping you will help me expand that list by emailing more images to me. It makes more difference than you can imagine. As proof, those images you sent to me of light zapping the cancer and healing light a few months ago kept me (and many others) flying for months!

Second, I’m inviting you to join me for the Lung Love Run/Walk on Saturday, June 20th. My very own team, “Live Lung and Prosper,” welcomes new members and/or donations at http://bit.ly/1Kj9tbk. If you join by this Friday, June 29th, they can still guarantee you a tee shirt. After that it’s a gamble. (Sorry, it’s the real estate agent in me. Gotta create a sense of urgency.)

OK, I held back the best part of my CT scan results. It showed that my Swiss cheese hip bones and spine are turning solid again. Was this improvement caused by the AZD9291? Was it caused by the bone strengthening (Zgeva) injections combined with calcium supplements? Was it the healing light sent by y’all???

Hoping everything is going well for you, too.



Footnote: If you don’t have my email address, go to the Contact tab at the top of the page and give me your email address. I’ll reply with mine.

Sunlight and Ducks Make Pretty Good Cures January 10, 2015

Friends and Family,

First, I want to share a memorable vacation with you. It was pure joy. Genevieve and I went to Palm Springs with her twin sister Charlotte and my best friend/brother-in-law, Lorin. With a refreshing lack of pre-planning, we spent a day in Joshua Tree National Park (extraordinary), hiked in the Whitewater Preserve (gorgeous), and Lorin and I took a guided tour of the 3,200 wind turbines in the area (fascinating). We also made a spontaneous trip to the Rose Bowl in Pasadena. We bought discounted tickets from scalpers at the gate. If I could beat cancer the way the Ducks demolished Florida State, I would never have to worry about cancer again in my life! I can’t ever remember having a vacation that was so much fun! Of course, I have an advantage in the fun department. I have laser focus on making the most of every moment. “Live like there’s no tomorrow” turns out to be a pretty good motto.

On to the real news. On Tuesday I had my latest CT scan, and the news is good. The cancer is stable.

So after all the enthusiasm for the vacation, why the lack of enthusiastic excess about stable cancer? Because after the last CT scan six weeks ago, when the cancer had shrunk 60-70%,

I was getting spoiled. I was hoping for a continuing trend that would lead to being cancer-free. I even dared, for the first time since I was re-diagnosed three and a half years ago, to dream that I was on the verge of becoming cancer-free. The bigger the dream, of course, the bigger the crash if it doesn’t come true. Still, I consider it a sign of growth that I would rather risk the dream than try to be numb and lose out on the joys of experiencing a full life.

There were a couple of asterisks that came with this “stable” report. The first is that there were more leopard spots (“sclerotic lesions”) on my hip bones. The radiologist again called it possible cancer growth, while my oncologist again said he thinks it means that the cancer is further dying off and leaving little pockets behind. “The best indicator is that you don’t have any pain in your hips.”

I don’t know what you think, but I’m going with Dr. Optimist. Also, I want to thank Tori Tomalia for reassuring me that she had the same experience, and that all went well.

Tori has an outstanding lung cancer blog, by the way. See http://lil-lytnin.blogspot.com/.

The second asterisk in this CT report is that, while overall my lungs are stable, one spot grew and another shrunk. (“Spot” sounds better than “tumor,” don’t you think?) My best guess is that the ADZ9291 is attacking the genetic mutation it was designed to attack, but since I have more than one mutation, it may not be impacting the other mutants.

I finally found out how AZD9291 works. The cancer disguises itself to hide from my immune system. It puts on a fake beard and sunglasses and tries to blend in with the crowd. AZD9291 unmasks the cancer, so the hero of this story, my immune system, can attack it. What I take from this is that, with cancer, just like with politics and relationships, sunlight is the best disinfectant.

Now that I know this, I’m asking for your help again. In the past I asked you to “think dried prunes” to shrink the tumors. I believe that is one of the things you have done that has kept me alive. This time I’m asking you to help with something that works like AZD9291:

Think of sunlight shining in on each of the little spots in my lungs, hips and spine, and let that sunshine fry each of the little critters.

If you have a photo image of sunlight doing this, I would love it if you shared it with me. I’ll post it on my blog, so that others can benefit as well.

I hope your year is starting out as good as mine.