Call Me an Optimist

Friends and Family,

Have you ever noticed the flight pattern of a moth while you were trying to swat it? No one – not even the moth – can predict where the moth will go next. They dart in every direction so fast that you would need a video in slow motion to follow their flight path. This is nature’s defense against bats and birds, and the occasional fly swatter. Since these predators can’t predict the moth’s flight pattern,  they can’t maneuver fast enough to keep up.

I think I must be genetically related to the moth. Yesterday, both my brain and my stomach were changing directions  at almost moth-speed. I was jittery, couldn’t think straight, and my stomach was doing the cha-cha. There were no bats in sight, but… there was that threat of meeting with my oncologist and getting my CT scan results. See below for a time-lapse photo of my own moth-flight pattern.

I was in full-on panic mode. It was far worse than the usual pre-verdict panic, probably because I had pretended like this meeting wasn’t going to happen for as long as possible. BAD idea. It works much better when I alternate between staying in the present, and then occasionally letting it all sink in. You have to deal with the fear, unless you want to be disconnected from your own life. Or go into total panic at the last minute. However, you don’t have to live in your fears – just visit them.  

Prepared or not, the appointed meeting arrived. First, the nurse took my vitals. “Your blood pressure is high. Are you under some stress right now?”

“I’m waiting to find out if my life will be extended another three months,” I said. “Does that count?”

“Got it,” she said.

Shortly after, Dr. Patel walked in the door. “I have the results, and I won’t leave you hanging. Your test results are great. No change!”

Yessssssssssssssss! I was flooded with relief. Since I’ve now been on Tagrisso for three times the average without progression, every time he says this I’m thrilled – and very grateful.

Genevieve’s response, was, of course: “I knew it.”

Still, she looked relieved, just like me. I jumped up and gave her a big hug.

So far, I haven’t shown you where the optimism came in. Here it comes.

Age sixty is the marker for a couple of routine medical procedures. With that in mind, I asked Dr. Patel if there was any reason why I shouldn’t get a pneumonia vaccine… and a colonoscopy.

The pneumonia vaccine is a no-brainer. EVERYONE with lung cancer should ask their doctor about getting this vaccine while they are stable. Pneumonia is one of those things that is easy to develop with lung cancer, and that can kill you, even if you are surviving all the other treatment challenges. It doesn’t take a lot of optimism to ask for this vaccine: It only takes being prepared for the future.

But a colonoscopy? NOBODY volunteers for one of those.

I’m an optimist, but not as insanely optimistic as this sounds. I have my reasons.

First, everyone should get a colonoscopy every ten years after age fifty. It’s been ten years since my last one, so it’s time. If the guy with the questionable lifespan is willing to do it, don’t you think you should think about it?

Take it from me, cancer prevention is far better than treatment. Get it now, regardless of your cancer history.

If you’re thinking about it, but just aren’t sure, Dave Barry’s story about his own colonoscopy will give you a good laugh and more to think about: http://www.miamiherald.com/living/liv-columns-blogs/dave-barry/article1928847.html.

My next reason is that, because of those roughly forty (!) CT scans I’ve had in the past eleven years, I have had approximately eighteen trillion times more radiation to my abdomen than the average person. Just this past winter I had a skin cancer removed from a place that never sees the sun. (Watch it – I was talking about under my arm.) That skin cancer was pretty good evidence to me that I’m at higher risk.

So that’s it. A guy with Stage IV lung cancer going to get a colonoscopy so he doesn’t end up with colon cancer.

I’ve wondered if my insurance company is going to laugh at the pre-authorization request. Can’t wait to see what they do with it.

And maybe, just maybe, while that doctor is scanning the nether-reaches of my bowels, he’ll find a few moths.

Be safe. Be well. Take good care of yourself. Regardless of your diagnosis.

Love,

Dann

The HOPE Summit Lives Up to Its Name

Friends and Family,

Genevieve and I just got back from the LUNGevity HOPE Summit, and I wanted to share a few of the highlights.

The first highlight was having Genevieve to share this with me this year. She soaked up a lot from the conference, and at the same time, she got a little overwhelmed, just like I did last year. Being in a conference with 300 people, and confronting such an emotional topic non-stop for a few days, has a way of doing that.

I was buzzed by being around roughly 200 lung cancer survivors. And it's not just the shear numbers; it's also the attitude! Just read about how last year's group handled a DISASTROUS BUS RIDE to get a feel for what I'm talking about.

Here are a few highlights:

In the past year, there have been more new lung cancer drugs approved (7) than in the previous 15 years COMBINED (6). It gets better! There are 123 new drugs currently in clinical trial. Just hang on a little longer, and the menu of treatment options will open up. It's a great time to be a lung cancer survivor!

Something else struck me when we got the ten-year lung cancer survivors together for a photo. (OK, I fudged by a couple of months to get in, but close enough.) After Genevieve took the picture, she pointed out that I was the only man. How can this be? Are the women out-living the men, or does this just tell us about who shows up at a conference?

Which one of these is not like the others?

One more major point that hit me, just as much as it did last year, was what incredible advocates we have within our ranks. These are the people that pull together fund-raisers, meet with Congress, organize walks, sit on boards to determine where research funds should go - The list is endless. This year, it hit me again while talking with Lysa Buonnano, Don Stranathan, Deana Hendrickson, and a few others. And I seriously think that we should have an annual Janet Freeman-Daily Award (the first one goes to Janet), to honor those who are doing so much to change the face of research, education, funding, and treatment within the field. These people inspire me to do more than I thought I could.

With so much momentum carrying us in a positive direction, I want to thank you all again for your donations to LUNGevity. Together, we raised $2,710. Now more than ever, your donations are having a big impact on curing cancer.

With Love and Gratitude,

Dann

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!

Love,

Dann

Distortions of Space, Time, and Sound

Friends and Family,

Genevieve and I have had our sense of reality severely tested. Time, space, and sound have all been distorted. 

Let's start with sound. Genevieve and I went to the same appointment together with Dr. Patel two weeks ago, and we both heard something very different. 

Here's what I heard Dr. Patel say: "The good news is that your scan results look great and everything seems stable. However, OHSU compared these results to the ones you had nine months ago, so we really can't tell if there's any change."

Here's what Genevieve heard Dr. Patel say: "The good news is that you're still in remission." End of story.

How could I hear, "We really can't tell," while Genevieve hears, "You're in remission?" 

I haven't heard the word "remission" from anybody except Genevieve for the last four years. When people ask her how I'm doing, she says, "He's doing great. He's in remission." I always took this as her affirmation, her imposing her intentions on the situation, her creating the reality that she wants to happen. Now, my doctor is teaming up with her to do this? 

I don't know what to call it, or what he actually said. All I know is that I'm feeling great, my scans haven't changed, and we're going to keep celebrating. 

OHSU had compared results from my CT scan, done two weeks ago in Portland, with ones done nine months earlier, also in Portland. The time in between, when I was having scans in San Diego, ceased to exist. The space/time continuum was then burst, as our UCSD (San Diego) radiologist said he would compare the last Portland scans with the most recent San Diego scans.  

Next (I think), time moved backwards, as we waited for the results. Eventually time started creeping forward again, and we received Dr. Patel's email: "No results back from the radiologists yet, but I eyeballed your scan and it looks great." He eyeballed it? Did I just slip and fall into the rabbit hole? Since when do oncologists trust their eyeballs to compare scans, when they don't even have another scan to compare it to? How do we know he's not in some kind of spacial distortion?   

Months later, in an email dated only three days later (proof of the time distortion), Dr. Patel emailed again: "CT of head and chest have been evaluated, and there's no change. Still looking great. However, we can't find the scan of your pelvis and abdomen to compare. Can you have OHSU burn another disc for you?" But before I even got to this email, time sped up and he sent a second email. "Never mind, we found it on the same disc. Won't be long now." Except it was. Very long. Weeeeeks  (possibly hours) later, he emailed again. "CT of pelvis and abdomen have been evaluated. No change!" 

Of course, with this great news, Genevieve and I went into a time loop and celebrated the CT results all over again. NO CHANGE! WOO HOO! TIME IS STANDING STILL FOR MY LUNGS!

Maybe we'll even celebrate by watching some 4th of July fireworks next week. :-)

Love,

Dann