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.

Love,

Dann

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.

Love,

Dann

Never a Dull Moment December 3, 2014

Friends and Family,

Genevieve and I are back in San Diego again, for all of the pokes and prods, scans and samples that are part of this latest three-day trip. We were tense waiting to hear the results from my CT scan, which was completed yesterday. It's the first one since I started taking AZD9291. By noon today we were in full "scanxiety" mode, still waiting for results five hours after we got to the hospital. 

We also had a new concern. Over the past five days I have had pain in my lower back that was shooting down my right leg. I had the same pain in the same place exactly one year ago. It got bad enough that I was in a wheelchair on a few occasions (airports, OMSI with the grandkids, and other events that required a lot of standing) over the course of a few months. Dr. Patel made sure the scan covered that area so he could find out if the cancer spreading.

One of the staff decided that we shouldn't have to wait any longer, so in between EKG's she gave us the Cliff's Notes version of the reports. It was decidedly mixed. The report for my lungs showed some shrinkage, but the one for my hips indicated that there were a few new lesions. 

This wasn't what we were hoping to hear. What did it mean that it was growing in one place and shrinking in another? My mind was racing, thinking about getting my affairs in order, and treatment alternatives - all the familiar ruminations. Genevieve was true to her own way of coping under stress, as she withdrew into a blank stare.

We had seen Dr. Patel before my scan yesterday, so he planned to release the results today, but not to see us again. After the report we had just seen, that was not going to work. I pushed to have the doctor see us.  

I'm glad I did. When he popped in a couple hours later, he was all smiles. He pronounced the results a total success. 

He said that what appeared to be new cancer spots on my bones was actually the cancer dying in those places, which made them easier to see on the scan. His complete confidence and experience with similar results was enough to convince us!

He also elaborated on the lung scan. Many of the countless baby tumors had disappeared, and many of the others were smaller. The biggest one shrunk from 24mm down to 7mm. Overall, he said the cancer had reduced in my lungs by 60-70%. YEAHHHHHH!!!!!!!!!!!!!

I have a new favorite oxymoron now: "Massive Shrinkage!" 

Now, about the lower back problem. It is not cancer. He thinks it may be a slipped disc or similar, something that should be treatable with a cortisone injection or similar. He said an MRI should define it more clearly. That sounds much better than either cancer, or the "torn disc" that it was (mis?)diagnosed as last year. 

Let's see... Shrinking cancer and a back problem that may be easily treated? 

I love the holiday season. Today was a little bit Christmas and a lot of Thanksgiving. There is a lot to be grateful for.

Happy Holidays!

Love,

Dann

Where Everybody Knows Your Name November 18, 2014

“Norm!”

Friends and Family,

If you have ever been a fan of the TV show “Cheers,” this one-word greeting will bring back memories. In most of the episodes Norm walks into the bar and goes to his favorite bar stool. On his way to his seat the whole bar greets him, because he is such a fixture there.

That’s what it has been like making these trips to San Diego for the clinical trial. Shuttle drivers, restaurant workers, and even a couple of TSA agents are becoming more familiar with each trip. So far there have been seven trips in the last eight weeks. That’s a lot of frequent flyer miles!

Is that a bad thing? ARE YOU KIDDING ME??? It means that I’m in the clinical trial!

For all of you who have been asking, I don’t go to San Diego for treatment. My treatment involves taking a single pill every day, which I can do anywhere. The trips to UCSD in San Diego are so that they can poke, prod, sample and scan me. They do this so that they can test the drug’s effectiveness, and so that they can add my side effects to the warning label that will go on the bottle when the drug goes on the market. Speaking of which, here is a list of the side effects that I have noticed:

1. Dry eyes

2.

This is no typo! That is the entire list! This is soooooo not like chemo!

The next question I get asked is, “How long will the trial last?”

The answer is, “I don’t know.”

If it stops working for me, it ends then. If it’s working, I will stay in the trial at least ‘till the drug comes on the market. The plan is to fast-track this drug for approval within a couple of years, instead of the usual seven-year FDA approval marathon. The short-cut is possible because it is a life-saving drug, and testing the drug for safety for another five years doesn’t make any sense. If it gets approved either I’ll keep coming to San Diego as an extension of the clinical trial, or I’ll just get a prescription from my oncologist in Portland. Either way, it’s a win.

I sometimes get asked how much I get paid. The answer: I get to live. ‘Nuff said.

The last question I get asked about the trial is whether I know if I’m getting the real thing, or getting a placebo. Easy answer! There is no control group, and no placebo! Again, for a life-saving drug the rules are different. Thank goodness the FDA got smarter with that rule!

Things just keep getting better. The trips are now starting to thin out. We have two more trips to San Diego in December, one in January, and then the trips will move to six weeks apart. Just in time for the holiday season, the stress of traveling starts decreasing.

I won’t officially know how the drug is working until early December when I get my first CT scan since starting AZD9291, and I hate to jinx it, but I’m feeling pretty good! I think I’m breathing easier, and my “night stalker,” Genevieve, who listens to me breathe at night when I go to sleep, thinks the same. Of course, my track record is about 50/50 with predicting, but at the bare minimum I know that it hasn’t gotten any worse. That’s a win in my book!

Cheers,

Dann

What's it take to get an MRI around here? October 26, 2014

Friends and Family,

Here's how a recent conversation went with my oncologist:

Me:   "My right elbow itches, and I get a twitch in my left eye when I eat squash."
Doc:  "Could be the cancer. We should get you an MRI."

Those weren't the exact words, but pretty close. I had some pain radiating down my right arm for two days, so I dutifully reported it, just like they drilled into us clinical study participants. 

I thought it might just be an irritated nerve, but when you're an oncologist everything looks like cancer. Since I have cancer in a couple of spots in my spine, he was worried it had spread to my neck. Regardless of whether I agree every time, it's good to know that he has my back.

This is when I got a lesson in the costs of running a clinical trial. Before he ordered the MRI he had to email the drug company to find out if it was something they would pay for, or whether it would my insurance would have the honor. Routine care goes under my insurance. Anything not routine, like my biopsy, EKG's, lab work, etc. gets paid for by the drug company. 

You thought I was going to San Diego all these trips for treatment? Nope. All I do for treatment is take a pill every day. The trips to San Diego are to get scanned, sampled, and studied.

Every CT, MRI, and trip to the infusion room for EKG's costs thousands. If you've ever been in a hospital you know that the bill is always, always, always higher than you think it could possibly be. 

Multiply these thousands by a couple of dozen or more events over the course of a year or two for the trial, and the math gets pretty staggering. Then multiply that by 440 participants. That's without even considering the cost of all the brains and research it takes to develop the drug. 

It all adds up to the reason why they charged $200 per pill for Tarceva, and why they'll probably charge something similar when AZD9291 grows up and gets a real name. 

I have often thought about the massive bill my insurance company is paying for my care. I have often felt guilty about these massive bills piling up over eight years, and I'm still running up the tab. I am one of the reasons, I thought, why your insurance premiums are so high. 

Am I worth spending that kind of other people's money - your money - to keep me alive? What is the value of a single human life, when the cost is so extraordinarily high? That has been a heavy weight to carry. Not enough to overcome my survival instincts, but all the same it has weighed on me.  

However. 

After eight years I've had time to think more about this. This is how it looks to me: 

The drug company spends a zillion to develop a drug. They pass this on to my insurance company, and make all their money back, plus another zillion for their trouble. 

They also sell it in other countries, sometimes for full price, but it's really based more on ability to pay. It can be sold for a fraction of the price, although they may wait until it has gone generic before they sell it at the discount rack price. 

Yes, your insurance dollars are paying not only for my care, but for the cost of developing the drugs that will be used around the world. You are also paying for future care, since the patent will run out in 20 years, and then they will be selling these pills for a few bucks. I'm OK with this system, because this country can afford it more than a lot of other places in the world. 

I don't know how you feel about it, but all this has eased my conscience immensely.

Back to my doctor and me. While I waited to hear back from him, I iced my neck and stayed away from the gym, so I wouldn't irritate it further. A day later he was still waiting to hear back from the drug company. I told him that the pain was gone, so he agreed to cancel the MRI request.

So what's the answer to the question, what's it take to get an MRI around here?" It's simple. If your baseline is cancer, anything more than a bad case of hiccups will get you another scan. But this time anyway, that won't be necessary. 

That's one less pain in the neck!

Love,

Dann

Partay!

You didn't REALLY think that Genevieve and I would go all the way to San Diego to start this new clinical trial without CELEBRATING, did you???

The night before I started the trial we went over to visit my buddy Craig and his wife Kim. I just learned that Craig is probably the FIRST PERSON IN THE COUNTRY to start on AZD9291. I think I was one of the very last before the trial closed. We are the bookends to what is turning out to be a terrific story!

Craig just learned that his cancer has shrunk so much on AZD9291 in just three months that his oncologist says that his tumors are barely visible! Now we have TWO reasons to celebrate, and TWO reasons for big heaping mounds of hope!

See Craig's latest at http://craigblower.wordpress.com/.

Yesterday was AZD-Day! October 15, 2014

T790, be prepared to meet your maker! The AZD9291 troops are swarming the beach head - starting NOW!

Yes, Zero Hour has finally arrived, and not a minute too soon. Six weeks with many near-sleepless nights and four trips to San Diego later, treatment has finally begun. Since the latest CT scan showed some cancer growth in just five weeks and breathing has been harder, the timing is definitely right. Whew.

Although the treatment itself involves just popping a pill, the production around it is major. Genevieve and I arrived at 7 AM and didn't leave the hospital until after 5:30, just in time to catch our plane back to Portland. In the meantime, we had an eight-hour EKG mini-marathon, along with collecting 17 vials of blood, four questionnaires, two urine samples, and taking my vitals five times. How am I ever going to be a man of mystery if I don't have any secrets left???

All of this makes light of what a big occasion this really is. One of my oncologists was talking to us today about the effort to turn lung cancer from a death sentence into a chronic disease. Sure, there are those who become cancer-free, and that's the goal. In fact, that included me for five whole years, before it returned in 2011. But for most of us, the latest efforts are for treatments like AZD9291, which is the third generation of the Tarceva-like drugs that keep buying us more time.

The strategy is to attack the mutation, and when the mutation learns (mutates) to get around the drug, to use the next drug to attack the new mutant. Each time it mutates they need to have a new drug. It's like an arms war with each side escalating a little more each time.

I have now been through six different kinds of treatment, or seven if you count chemo on two separate occasions. Three of those treatments didn't exist the first time that I had treatment. This latest treatment wasn't even in clinical trial in this country until three months ago. I have often felt like a frog, jumping from lily pad to lily pad just before the one I was on sinks.

It looks like I have a few more hops left in me.

Love,

Dann

Greetings from Sunny San Diego! October 7, 2014

Friends and Family,

The new phase of the journey begins!

I have now started my pre-trial phase. No, NOT the criminal kind. It's the kind where they plug me into every medical machine ever invented, and then withdraw enough bodily fluids to turn me from a grape into a raisin. When they are done, they will pronounce me ready to be properly drugged.

Because the tests started so early in the day, I flew down from Portland yesterday morning. I came by myself, because Genevieve is still suffering away in Hawaii. With a whole day of nothing (medical) to do, would you expect me to go to Genevieve's dad's empty house and do nothing all day? Ha! Now what kind of "Carpe Diem" guy would I be if I did that?

I had a nice long beautiful walk on the sunny Del Mar beach. Gorgeous! I couldn't stop smiling for two hours! Was it the beach?

I will admit that I also spent half a day with my iPad working from outside the Del Mar Starbucks with just occasional glimpses of the ocean, but still, Carpe Oceana! (I don't think Oceana is latin for Ocean, but work with me.)

I'm now finishing a 7:30 AM-7:30 PM  EKG marathon. It's five minutes of getting plugged in, scanned and unplugged, followed by an hour of down time. Later in the day the EKG's moved to every two hours, so I had plenty of time to roam the hospital. With all that free time on my hands, I've been trying hard not to end up in the OTHER kind of "pre-trial."

Tomorrow I have one last 7:30 AM EKG, then get a 90-minute eye exam. (What can they be doing for 90 minutes???) At the end of the day I get an echocardiogram, followed by a CT scan. After that, the imaging paparazzi are done with me. I will remain anonymous, but by the  time they have all those images, my organs should be famous in certain circles.

When the medical team are done having their way with me, I will head straight to the airport and back to Portland. I am very grateful that the MOU team did such a great job of squeezing all those tests into the fewest possible days, especially with such short notice. I can still work from my iPad, but it's much easier when I'm back in my office, so making these trips as short as possible makes everything go easier.

After all of your thoughts and prayers for me to be T790 positive, here is one more number for you: 440. That is the total number of people IN THE WORLD that are part of this clinical trial. Great Britain, Japan - the trial is spread out around the globe. And out of 7 billion people, I am one of the extremely fortunate 440.

Del Mar Beach or not, this is true: My future's so bright, I gotta wear shades!

The next step will be to come back next Tuesday... to start the new drug! Counting the days! 7 is the next great number!

Love,

Dann

<<< T790 >>> YESSSSSSSSSSSSSSSSSSSSSSSS!!!!!!!!! October 3, 2014

Friends and Family,

WE’RE IN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I got the call today. I have the T790 mutation! WE’RE GOING TO SAN DIEGO!

Okay, that was a blatant rip-off of those TV adds where some athlete says “I’m going to Disneyland!” right after winning the Super Bowl or some other equally gigantic event. But to me the Super Bowl seems pretty puny when compared to LIFE!

WE’RE GOING TO SAN DIEGO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now I will attempt to temper my enthusiasm long enough to give you the details. No promises.

This Sunday I will take my last Tarceva so that I can start an 8-day cleanout period before I start the new drug. But before I start the new drug, next week I’ll go to SAN DIEGO… YAHHHHHHHHHHHHH!!!!! (Sorry, but I did say no promises)… for two days of tests. I’ll have 12 hours of hourly EKG’s, a follow-up EKG 12 hours later, a CT scan, an eye exam, an echocardiogram, and a test to see how many times I can say,“Peter Piper picked a peck of pickled peppers” without making a mistake. Then they’ll have me count down from 100 backwards by 7’s while skipping rope, also backwards.

WE’RE GOING TO SAN DIEGO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sorry. It just keeps leaking out! Anyway, I just made up the last part of my pre-trial test protocol. I’ll let you decide how much of it was made up.

On October 14th I’ll start taking AZD9291. This is a pill that I will take once daily. Despite all the heart, eye, and rope-skipping tests, the side effects are usually minimal.

I can take the drug at home, but will need to come to San Diego weekly for the first three weeks, then every three weeks, and eventually every six weeks for tests.

Once I get rolling, I’ll be able to fly down and back in the same day.

Now on to the other important stuff. THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!! All your thoughts and prayers for a positive T790 result paid off!

I will be the first to tell you that I am the massive beneficiary of a giant run of dumb luck! I will also be the first to tell you that it wasn’t ALL dumb luck. It was you, and it was me! We did it! WE’RE GOING TO SAN DIEGO!!!!!!!!!!!!!!

YAHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ThankYouThankYouThankYou for your very important part of this! Even though the odds of getting in were 50/50 (and not as high as my Portland oncologist thought), it felt a lot more like an almost-sure thing waiting to happen. With everything lining up the way it has been lining up, and with all the support that you have given, how could it not be almost a sure thing? You have my gratitude!

More to follow after I crash from my adrenaline rush.

Love,

Dann

P.S. Thank you!

T790 is Everywhere!

My brother Mike and his wife Colleen sent this photo to me today from the Eastern Oregon desert to let me know that T790 is in the air! (Maybe, more specifically, the lungs!) Thanks for sending all the love and positive energy my way!

T790 Is Where You Find It

Getting a little help visualizing T790 from beach rocks in San Diego!

Smooth Sailing September 20, 2014

Friends and Family,

Yesterday was another day that could not have gone any better!

We met the Interventional Radiology (IR) doctor just before the procedure. I asked him if he knew why we're hoping he'll use the "little guy" tumor if possible. He told me it was probably in my chart. His "Fellow" (trainee doc), who had done his homework, was able to tell him that using the larger tumor would delay the start of my treatment by almost four weeks.

Next I told him that I was willing to tolerate a little more risk in going for the harder-to-get "little guy," in exchange for starting treatment sooner. He agreed to try. Again, it pays to be your own advocate!

I also handed this IR doctor a piece of paper and asked him to read it to while I was under sedation. Here is what I asked him to read:

"You're going to start shrinking all your tumors and the cancer in your bones right now, and you're not going to stop until it's all gone from every part of your body. Make it happen, Dann! Don't wait for medication to do it!

And so it is."

He gave a less than committed response, but his Fellow promised to make it happen. Better yet, after they left, Anthony, my nurse, told me that he would read it, because he understood what I was trying to do. He said he would try every possible approach to healing if he was in my shoes, because we just don't know what will or wont make a difference.

Anthony read it to me three different times during the procedure, more than I had asked for.

I'm not sure that Anthony has more than a vague idea how much this means to me, since I was too groggy to express myself, but he will. I will be sending him a thank-you letter today. Whether this hypnotic suggestion works or not, his caring left a big impact on me. It doesn't always take a tremendous effort to make a difference in people's lives. It just takes showing that you care.

I made it through the procedure without any complications, and the IR doc was able to use the smaller tumor. YESSSSSSS!!!!!!!! All systems go!

Tuesday we're off to Hawaii to think about sand and surf and the beauty of the world, and being T790 positive, and not all that much more.

We will find out if I get in the study in about two weeks, when we get the biopsy results. Until then, thank you for all your positive thoughts and prayers, and for visualizing T790.

What you do really does make a difference.

Love,

Dann

The Dream Team September 18, 2014

Friends and Family,

Genevieve and I flew down to San Diego this morning in advance of my lung biopsy, which will be tomorrow morning at 10:30. Due to time and distance they didn't schedule me for the usual pre-op consultation to explain what would happen.

First I should tell you that a year ago Genevieve and I planned a trip to Hawaii, which would have started today. I asked my new oncologist about delaying the start but still going, since there's nothing to do while we wait for the biopsy results. He didn't like the idea, since I wouldn't be close by if I get the green light. But what difference does that make? If I get in the study I could fly back from Hawaii just the same as I could fly back from Portland. So what would you do???"

We're going to Hawaii on Tuesday.

I called the oncology Nurse Coordinator to try to reach the doctor doing the biopsy, since I knew nothing about the procedure and I was losing sleep over it. I wanted to know how long before surgery should I stop aspirin, since it's a blood thinner. I also needed to know how long after the biopsy it was safe to fly, since I don't want a pressurized airplane to cause a collapsed lung. This is another reminder of how important it is to be your own advocate.

I was curious how they could do a "CT-assisted biopsy," since I've been in that CT tunnel at least 35 times now, and there's not enough room in there for me and the doctor both. We should have met long before this if we were going to be that intimate.

It turns out that they scan me, then insert a needle into my lung, usually through the chest but sometimes through the back. They then scan me again and see how close they are to the tumor. They go back and forth, scanning and adjusting, until they get their biopsy.

I'll be under conscious sedation and feeling no pain. The real danger here is that I'm told that you lose your inhibitions, but have no memory of it afterwards. The staff think this is sometimes hilarious. I'm just hoping that Genevieve isn't in the room, and that there are no hot nurses assisting. Genevieve thinks this comment is sexist, but hey, I'm a guy.

There are still two big forks in the road. The first is to see if I have the T790 mutation, which I will come back to.

The second is which tumor they biopsy, the big one or the little one. If it's the little one, no problem. If it's the big one, and I have T790, they will delay treatment for 24 days so that the tumor has time to "heal" for research purposes. Those will be nerve-racking days, since the cancer will be growing during that time.

If I have the T790 mutation, I'm in the study. If I don't, that's the end of it. I need to find a different treatment option.

This makes now a very good time to visualize:

<<<<<<<<<<<<<<<<<<<<<<<<< T790 >>>>>>>>>>>>>>>>>>>>>>>>>>>>

Speaking of visualizing T790, I have to tell you about our fantastic neighbors! Thursday night we got back from San Diego around midnight, tired and tense from all the treatment/no treatment stress. Friday morning when I went into the kitchen, I looked out the window and saw a giant sign that said, "DANN... T790.... Love Violet and Steve" in their windows!

After seeing that sign, I had tears streaming down my cheeks! With THAT kind of support, how can you NOT believe that everything is going to work out? You talk about team work? THAT is MY kind of team!

Such wonderful support has come from so many of you. It comes in your words, your emails, your blog comments, and your thoughts and prayers. It makes much more difference than you can imagine!

We all think we are so much more alone in this world than we really are. It's just that it usually takes a pretty big nudge for most of us to let each other know. There's much more "Team" around all of us than we know, until a great big opportunity pops up.

So do yourself and someone you love a favor. Create your own great big opportunity. Show them in some way that you love them, especially when they aren't expecting it. That's when it will hit home the most. You'll feel it too. I guarantee it.

That's what I call living the dream.

Love,

Dann

Getting Help Visualizing T790

We got back from San Diego about Midnight Thursday night. Friday morning I had breakfast and then looked out my kitchen window. This is what I saw!

Steve and Violet have these signs in their windows! It put a lump in my throat and tears in my eyes!

What amazing neighbors/friends to have!

Thank you, Violet and Steve! You're the best!

Going for a Balloon Ride September 11,2014

Friends and Family,

It's been a wild ride the past five days, and it's far from over! It feels a bit like filling a balloon with air, then letting it go and watching it fly in every direction. My future is that balloon, and I have no idea where it will head from one minute to the next. Right now Genevieve and I have about as much control as you would have over that balloon.

We met with my new doctor to get into the trial yesterday. I thought I was "In", but that wouldn't be dramatic enough, now would it??? There is a catch.

I need to have a new biopsy that tests positive for the T790 mutation. Despite what I was told at OHSU, Dr. Patel told me that there is NO RECORD of a positive T790 test in my charts. They need to base the results on a new sample anyway, so the only thing it would have provided was reassurance. 50% of people that "graduate" from Tarceva have T790, so I have a 50% chance of getting into the study.

GROSSOUT ALERT: Don't read this paragraph if you are squeamish. To get the biopsy they are going to be to put me in a "twilight" state, stick a needle through my back and into my lungs, and then pull out a "core sample." They will stick the needle in while they are doing a real-time CT scan, so the scan can help them find the right spot.

Remember my comment in the last email about needing to have a tumor that was big enough? It turns out that they need one tumor that is at least 1 CM for the biopsy, and a SECOND one at least that big that they can use to measure if the treatment is working. I have one that is plenty big, but the second one is 0.96 CM. If only someone had told me in advance that I needed to grow a pair!

We will fly back down to San Diego for the biopsy next Friday. It will be a game-time decision whether they think they can get the sample from my inadequately-sized tumor. If I pass the test but they have to use the big guy, that will delay getting me in the study for 24 days while the tumor recovers, because they need a healthy tumor that they can measure. BUT...

There's a catch! The study is close to ending, and they don't know when that end will come. If my results aren't back in time, even if I "pass the test," I will be disqualified.

Enough with the catches!

Let's think positive! Root for the "little guy" tumor to get used! Then visualize T790! (Notice how I keep writing T790 so it will be easier to visualize?) Expect that there's plenty of time to get in the study!

I decided a long time ago that whatever came next, I was going to enjoy the ride. It could be easy or it could be an amazing challenge, but there will never be another life that looks like this one. Why not soak it all in and get the most out of it? I can only control some of it, and in the end the outcome is the same for all of us. None of us will live forever. Why not enjoy the ride?

I will confess that this approach only works for about 16 hours a day. Once I try to sleep my defenses are down, and sometimes (like most of the last 5 nights!) my mind races around like that balloon.

So be it. I can only control what I can control.

I hope you are enjoying your own ride. Just like me, this ride is the only one that you will have.

Love,

Dann

<<<<<< T790 >>>>>>

The Stars are Aligning September 8, 2014

Friends and Family,

I’m not out of the woods yet as far as getting into this study, but before I fill you in on the missing piece I should tell you about Craig. Many of you have asked how in the world I ended up meeting someone in the same situation as me, who just happens to live a thousand miles away, and who is in the only clinical trial for this drug this side of New Hampshire. How did the stars line up for THAT one?

It started back in December, when I was visiting my father-in-law Walt in San Diego. I had some time, so I scoured the internet, looking for blogs written by people with cancer that are like-minded. I found this guy that had a great attitude about his cancer, and had a very entertaining way of writing. Plus, his graphics kept me laughing. Not only that, but the parallels in our lives were mind-blowing. He has the same type of lung cancer, started Tarceva at the same time as I did, had radiation to his hips at pretty much the same time as I did, and has a terrific wife and support team helping him through this, like I do. He’s just a smidge older than me. PLUS – and this has nothing to do with anything other than uncanny similarities – He goes to Hawaii every year, and he had his kitchen remodeled about the same time as we did.

As I kept reading, I found out that he lived in San Diego. What a coincidence, since that’s right where I was! I contacted him and met him for coffee before I left town. We made a great connection, and have been staying in touch and supporting each other ever since.

Once his cancer started growing again, Craig entered the “A-Team” clinical trial. That was just over six weeks ago. Last month when I asked my oncologist about next-step alternatives, he wasn’t even aware that this trial had started. If it had not been for Craig blazing the trail, I never would have found out that this clinical trial was a possibility for me.

WHAT DO I TAKE FROM ALL THE STARS LINING UP LIKE THIS???? I think there are a LOT of pieces that had to come together:

1. Craig started his blog (http://craigblower.wordpress.com/) to SPREAD AWARENESS, which he hoped would be of benefit to other people with cancer. This has worked out, in a big way! Without his blog, I never would have learned about this research project. (Note: This is the same reason that I keep encouraging you to go to my blog site. The more hits I get, the more my blog shows up in search engines, which leads to more people finding my blog, so that I can also share what I am learning.)

2. LOTS OF “DUMB LUCK” IS INVOLVED. Prowling the internet at exactly the right time, just when I was in the town that Craig happened to live in, Craig living in the only city within 2,500 miles of my home that had started this clinical trial…

3. YOU MAKE YOUR OWN LUCK. Arnold Palmer, when someone commented on his good luck, once said, “The more I practice, the luckier I get.” If I hadn’t been searching the internet, I never would have found Craig’s blog. If I hadn’t reached out to him, we never would have become friends. If I had not spent the entire day Friday chasing down the Master of the Universe(MOU), my doctor, and the people responsible for pulling my records together at two hospitals and two clinics, this would not have happened.

4. THERE IS SOMETHING BIGGER AT WORK HERE. Some call it God. I have a more simple name for it. I call it love. To me, this “luck” is a result of ALL OF YOU sending your love, prayers, and positive thoughts my way. That kind of energy finds a way to channel itself into something good! Again, I am blessed by your gifts to me! You have my gratitude!

I’ve held off long enough, so now I will address the part I alluded to at the beginning: I’m not yet out of the woods as far as getting into this clinical trial. I talked with Craig over the weekend, and Craig mentioned offhandedly that one of the criteria for getting into this trial was that the tumor had to be big enough.

BIG ENOUGH? I started worrying. I have hundreds of the little suckers, but none of them was very big. I have been worried about this for two days. Sleep has not been easy.

This morning I called Kathy, the person filling in for the MOU. I asked her the question that every guy worries about at some point:

Was mine big enough?

Oh, come on. If you’re a guy, you KNOW you’ve worried about this at some point. What you needed to hear was exactly what Kathy said to me…

She said YES!!!!!!!!!!!!

YAAAAAAAAAAHHHHHHHHHHHHHHHHH! I ’m bad! I’m bad! It’s big and I’m not sad!

As you can tell by that last little bit, I’m feeling pretty good now!

More to follow tomorrow, after I meet with the doc tomorrow. Until then, you (again and always!) have my gratitude for all your positive thoughts and prayers.

It’s all working!

Love,

Dann

Lightning Strikes! September 5, 2014

Friends and Family,

WHAT A RUSH!

This morning my buddy Craig called to make sure I got critical news ASAP. He had contacted the clinical trial coordinator in San Diego for AZD9291 (dubbed “The A Team” by Craig), and found out that they will only be accepting new patients UNTIL NEXT FRIDAY. I have exactly one week to get into this trial, or miss the opportunity altogether.

Was it time to press the panic button? This was the only treatment option that we know of that sounded better than either chemo or staying on Tarceva and going downhill slowly (or faster, we don’t know). My time window was incredibly narrow. I also needed to have the right mutation (T790) of my mutation (EGFR), get all my clinical records down to San Diego from two different clinics and two different hospitals, have my oncologist call, get an appointment and be seen, and possibly have a new biopsy, all by next Friday. It felt like drawing a target in the middle of a football field and hoping that lightning would strike on the 50-yard line.

I felt the tension mounting this morning as I was scrambling to get this together. I called AND emailed the clinical trial coordinator (“Master of the Universe,”for my purposes), essentially telling her that I would do back flips, cartwheels, paint myself purple and turn myself into a Wookie if it would get me into The A Team clinical trial by next Friday. Next I called Dr. Cetnar's office to grease the wheels of bureaucracy by using the two-pronged frontal assault, from both doctor and patient. HOWEVER… wait for it… he is… ON VACATION starting today!

About this time my back was so tense that it felt like a coiled steel spring. If someone had snuck up behind me and said “boo,” I probably would have jumped right over my desk. I might have even left a trail behind me.

I finally got an email from the Master of the Universe (MOU), letting me know that ALL my clinical records, biopsies and scan results would be needed to consider me for the trial. And, by the way… wait for it… she is… ON VACATION starting at 5 PM today. No pressure here…

In the end, the pieces tumbled into place. MOU told me that since I already have the T790 mutation, I shouldn’t have to worry about being in the target group. Dr. Cetnar called MOU from home on his vacation. Both OHSU and the Oregon Clinic got past their internal glitches and computer failures and faxed their small mountains of records to MOU, and both film libraries told me that they would have CD’s burned with my scans on them by Monday. AT 5:30 PM today MOU emailed to tell me that my appointment will be on Tuesday.

MOU started her vacation right after hitting the “Send” button.

I’m in!

Absolutely everything had to line up for things to fall together for me. If I had my CT scan a week later, I would have missed this clinical trial. If I didn’t have a job that was flexible enough to accommodate the travel involved, I couldn’t make this work. If we weren’t fortunate enough to be able to afford repeated travel expenses, this wouldn’t be feasible. And of course, if I hadn’t heard about the trial from my buddy Craig, my oncologist wouldn’t have even known that the trial had started.

EVERYTHING above had to fall together in the right way. What are the odds?

Sometimes lightning DOES strike right where you need it.

Thank you to all of you for all of your positive energy, prayers and cheerleading. Some of you took that request literally! It was great! I have also shared your emails with Genevieve, and both of us have coped much better because of you. It was a semi-sleepless night for both us, made much better because of you.

Thank you for being my light, and my lightning.

Love,

Dann

Course Correction September 4, 2014

Friends and Family,

Before Genevieve and I met with Dr. Cetnar today to get my CT scan results, I had the usual paperwork to fill out. The first question on the sheet is, “What are your concerns today?” I wrote, “Making sure that my excellent health continues.” I have felt so confident lately that it has gotten easier to fill in that blank with positive affirmations. Last month I wrote “World Peace,” since I had almost no concerns about my own health.

All that changed today. When a doctor’s opening line is, “I have good news and bad news,” you know what is coming next. In this case the good news is that there has been no increase in the number of little cancer mini-tumors throughout my lungs. The bad news is that a couple of the biggest ones have doubled in size.

If that was the end of the story it would be no biggie, since the biggest tumor is only 2 cm (3/4”), but what it means is that the cancer is learning to work around the Tarceva. It will only escalate from here.

So now we are left with a decision about what to do next. Here are the options Dr. Cetnar suggested:

1. Continue with the Tarceva, and use radiation when the little tumors get too big. This sounds like a crappy option to me, since I have hundreds of the little suckers, and I just can’t imagine that the radiology team can accurately zap a bunch of little spots and hit the targets.

2. Go through chemo again. He doesn’t like this idea, since chemo didn’t shrink the cancer at all last time around. However, it did stop the cancer from growing for some time. Not only that, but he was surprised to hear that my previous oncologist hadn’t used the same chemo cocktail that had been effective in shrinking the tumor that I had eight years ago. That gives hope that it might work again this time. The side effects aren’t fun, and the outcome statistics show a pretty short-term gain for most people, but it beats a poke in the eye with a sharp stick, at least by a little.

3. There is a clinical trial on a new treatment (AZD9291) that targets my cancer’s genetic mutation, but only if the cancer has further mutated in just the right way. My chances of having the right new cancer mutant are 60%. To add a little more challenge to this, there are only two places in the country that are running this clinical trial right now. The closest is at UC San Diego. He doesn’t know if they are accepting new patients.

4. I could start on afatinib, which is similar to Tarceva. About 11% of the people who switched when Tarceva stopped working had shrinkage of their cancer. However, what we didn’t find out is what percentage were able to stop their cancer from growing. It would be great to get rid of it, but I would be happy with a drug that stops it in its tracks for any length of time.

There are other options, all of which Dr. Cetnar thinks would be chasing rainbows.

The upside to all of this is that the growth has been so minor that we don’t have to race around in panic mode to come up with the next step. If the cancer was growing faster we would have to make a quick choice, maybe more out of desperation. Instead, we have time to evaluate the options.

This is a lot to absorb in the last three hours, but we worked out an initial plan. Dr. Cetnar and I will both call UCSD and see whether they are admitting new patients (since sometimes they listen more to the doctor, and sometimes they listen more to the patients advocating for themselves), and what it would take to get me in the trial. Meanwhile, I will also try to get a consult at MD Anderson in Houston, which Dr. Cetnar says is consistently rated one of the top two cancer centers in the country.

I am extremely fortunate in how this is turning out. I have a buddy in San Diego that has been on a remarkably parallel path to mine. He is close to my age, has the same type of non-smoker’s lung cancer, started Tarceva about the same time as me, had radiation to his hips at almost the same time as I did, and just started on this AZD9291 clinical trial two months ago. He is the one who told me about this trial. Long ago my oncologist met the AZD9291 pharmaceutical rep at a conference and asked to be part of the first wave of clinical trials, but he never heard back from the rep, so he didn’t know that clinical trials were actually underway. Hearing about it from Craig may end up saving my life, or at least extending it for a healthy interval.

All your positive energy and prayers are very much appreciated right now, and I do mean POSITIVE energy! Leave your pity behind! Bring on the cheerleaders!

Love,

Dann