Living Out a Fantasy

Friends and Family,

I hope the above subject heading doesn’t get this email filtered into the spam folder, along with the fake Viagra ads and opportunities to meet sexy strangers who live nearby, but I couldn’t say it any other way. This really was a fantasy for me.  

Genevieve and I recently got to do something I have been dreaming of for the past two and a half years, but that I never actually thought would happen. I got to thank the people that saved my life.

Ever since I started this clinical trial for AZD9291, now approved and known as Tagrisso, I have been thinking about the lab scientists who were coming up with this new treatment. How did they come up with the strategy? How did they test it? And ever since my first CT scan, which showed that my cancer had shrunk by two-thirds, I have fantasized about what it would be like to actually meet these scientists, and to thank them. There was no reason to imagine that it would ever happen, but hey – I’ve beaten the odds on everything else, haven’t I?

It happened because Genevieve and I were invited to go to Maryland to visit Astra Zeneca, so that I could be on a panel.  Astra Zeneca has an annual Science Day, so that their scientists have an opportunity to see the value of their work. Just like at other scientific conferences, they had a poster session with displays of all their research over the past year, and they had speakers on different topics. At the end of the day, two other survivors and I sat on this panel. The idea was to let these scientists know what it is like to live with cancer, and then to understand in a much deeper way what a difference the work they do makes. I couldn’t wait for the opportunity! But before that…

It got even better. We got to tour the labs. We saw where the kernel of an idea gets translated into experiments, and where the fruits of those experiments lead to larger-scale experiments, and eventually to a finished product. And it was right in this lab where I got to see the exact tanks where AZD9291, the medication that saved my life, was made. It was exhilarating!

And just like those TV ads for steak knives that you can cut steel, or equally tough steaks with: “But wait! There’s more!!!”

We met people from multiple departments all day long. Each one seemed to be genuinely appreciative that we were there. And Genevieve and I got to tell them in person that, because of them, I am still alive. They cried. I cried. Genevieve cried. We were all a mess, and very embarrassed, and really happy.   

Finally, we got to the end of the day, and the panel. The last time I spoke in front of a crowd this big was four decades ago, but I didn’t let that get in the way. I told them of the devastation of getting diagnosed. I shared the fears before every CT scan, waiting to find out how long I might live. I shared how much richer my life has been, partly because I don’t know how long I will live, and largely because I’m living in gratitude every day, and my life is full of love, and my values and priorities are so much clearer. And, because I was worried that we would run out of time, I interrupted the moderator to tell these scientists thank you. Thank you, thank you, thank you. For saving my life. I choked up, and barely got the words out, in front of 300 people. But nothing was going to get in the way of this opportunity.   

So much of my life now is about gratitude, and this was the perfect moment to express it.

And now I have one more thing to be grateful for:

I got to live out my fantasy.

No Viagra required.

Love,

Dann

P.S.: We are having the annual Lung Love Run/Walk on Saturday, June 24th at Laurelhurst Park. We would love for you to join our team, Live Lung and Prosper, if for no other reason than it’s a great name. :-)  This year my goal is to have 30 participants, and to raise $3,000.

To join my team or donate, go to http://engage.lungcanceralliance.org/site/TR/WalkMap/General?team_id=1532&pg=team&fr_id=1211#sthash.GlWuI5BI.dpuf.

A Victory Lap and a Partial Graduation

Friends and Family,

Genevieve and I have even more reason to celebrate after this trip to see my oncologist in San Diego. It has been three long months since the last nervous check-in to see how my CT scan results turned out. That's twice as far apart as the scans used to be, so there is twice as much to worry about. But guess what? No new growth. Again!

I started  taking AZD9291, AKA Tagrisso, 27 months ago. On average, this drug works for 13 months. This means that I not only "won" a "baker's year" of extra life the first time around: It means that when that was done, I took another full victory lap around the sun. Yaaaaaaah! So much to be grateful for!

As if that wasn't enough. There's more! On this trip, we found out that the trial is beginning the wind-down phase. That means we will see my oncologist half as often, which matches up with the scans. Also, each time we fly to San Diego, the team places electrodes on my chest and does an EKG to see if my heart is being affected. Those tests will be done half as often as well. The risks of this drug are becoming more known, so the researchers aren't as worried about the impact on people's hearts. That's a good sign not only for me, but for every person who will ever take this drug.

Flying to San Diego four times per year instead of eight sounds pretty great, although there are some perks to taking those trips. Getting even a few hours in the San Diego sun after the snowiest, iciest Oregon winter in my lifetime has done our hearts good. See below for a picture of the signs of hope and optimism (in addition to Genevieve) that the latest San Diego trip brought.

Even though we won't get to see as much beautiful sunshine, this means that I have partially graduated, and I'm getting close to outlasting the trial. Yet another victory! The final victory will come at the end of the year, when the clinical trial is shut down. Tagrisso was the fastest drug to ever get approved for a clinical trial by the FDA, and it has been life-extending for those of us who had a good response. What a great success story.

I want to give props to AstraZeneca, the sponsor/creator of this amazing drug. They will continue supplying this med to me for free after the trial is over, for as long as I am still benefiting. Although this seems like the ethical thing to do, I'm told that this isn't common. Thank you, AstraZeneca!

Speaking of victory laps, I'm asking for you to take one with me. The event is the Lung Love Run/Walk, which will be held in Laurelhurst Park in Portland on Saturday, June 24th. My goals this year are to have a team of 30 people join me on the walk, and to raise $3,000 for Lung Cancer Alliance and their advocacy efforts. This is the group that I went with to D.C. last year to lobby congress for lung cancer research. Given the political climate, lobbying for health care is going to be extremely critical. I encourage you to check out the web page for my team, Live Lung and Prosper, at http://engage.lungcanceralliance.org/site/TR/WalkMap/General?team_id=1532&pg=team&fr_id=1211. I am only doing one fund-raiser and one trip to D.C. this year.

Have you had your own "victory lap" event lately?  Share the joy and pass it on. Reply in "Comments" below, send it to me through the "Contact" tab, or send me an email. I'd love to hear about it, and I would love to share it, if you give the OK.

Love,

Dann

Advocacy, Staying Alive, and the Zombie Apocalypse

Friends and Family,

You know how us guys are not known for listening very well? This week, I did something even more rare. I listened to myself.

Last Friday Genevieve and I were part of the Lung Force Expo, and I gave a talk on how to be your own advocate. Preparing for it got me thinking that there might be even more things I could do for myself, so I took another look.

 The basic idea is that, no matter how good your doctor is, YOU have a lot more invested in how this turns out than they do. That means it’s on you, or in this case me, to make sure things go the best they possibly can. You can’t do that if you’re passive.

 First, I started thinking about Xgeva, the bone-strengthening injections that I’ve been getting for about three years. Strengthening porous cancer-riddled bones is good, but how much stronger will they get if I keep getting these injections? The downside of these injections is the risk of necrosis, or killing off the bone. That includes the jaw, so I get asked about dental work and jaw pain every time I go in. Makes me a little nervous. So on this trip to San Diego, I asked my oncologist, is it time to stop? “Good question,” he says, and I can tell it hasn’t occurred to him before now. “The research says one year is enough for the other brand, Zometa. You’ve been on Xgeva for three. You can probably stop now.” That means great news! My risk of turning into a zombie just went way down! The apocalypse will have to wait.

My next question was about this clinical trial. Almost a year ago, I had the choice of going off the trial when my trial drug was approved, but I chose to stay on the trial to : 1) help with the research, since there were only 440 people in the world on this trial to begin with, and most are no longer on it; and 2) to stay connected with my San Diego oncologist, whom I think has an excellent grasp of the latest lung cancer research. Here’s that story: http://www.dannwonser.com/blog/decision-time-for-my-treatment/12/3/2015.

 HOWEVER. Partly because it’s been bothering me from the beginning, and partly because my friend Linnea Olson got me thinking more about it after going nova on her own blog about excess radiation– see https://outlivinglungcancer.com/2016/10/03/when-noncompliance-is-your-best-option/ - I started questioning the trial all over. So I had the discussion with my oncologist again. My questions were better this time around:

1.       If I skip every other scan, will they kick me out of the clinical trial? And…

2.       If I’m not in the clinical trial, can I see you anyway?

 I got the answers I wanted. Dr. Patel emailed the trial sponsor about my ultimatum even before I left the clinic for the day, and is willing to see me even if I’m kicked off the trial.

 So the bottom line: I will check on my insurance, to make sure they cover Tagrisso, and he will tell the clinical trial people that I will drop out if they don’t agree to a reduced CT schedule. Either way, it looks like a win for me. It just took being ferocious.

And did I forget to mention, in the midst of all this ferocious self-advocacy, that my scan results were again good? :-) Twenty-five months on this trial, and no signs of growth! Woohoo! The more time I get, the more time there is for the NEXT new drug to get developed! The longer I stay alive, the better my chances get that I can outrun this pesky disease. Life is pretty great, isn’t it?

So if you’re interested, I’ll tell you what I shared about how to be your own advocate:

 You can’t wait for the medical experts to do it for you. They may care, but it is not their life on the line.  They may also be very knowledgeable, but that doesn’t mean they always have the best judgement.

 Being passive can cost you your life, and it almost cost me mine. The first time I had cancer, I was treated successfully and was NED (No Evidence of Disease) with the help of the top lung cancer specialist in the Northwest. When she left town, I was handed off to one of her partners, but I didn’t check his credentials. MY FIRST MISTAKE. He was an expert, but not in what I needed. He specialized in prostate cancer. That explains a LOT about those exams….

 When something weird showed up in my lung CT scan, he didn’t know what it was, but didn’t think it was cancer, so he suggested waiting four months until the next scan. MY NEXT BIG MISTAKE: I didn’t get a second opinion. This could have gotten me killed. When it turned out to be cancer and I switched doctors, my cancer remained manageable, but then that oncologist left town. MISTAKE #3: I didn’t check the new doc’s credentials. I must be a slow learner! However, this time I was a little more on the ball. When the cancer started growing again, he had no answers, so I am the one who told him about the clinical trial I am in now.

 There are other stories. Lysa’s doc wanted to take her off a successful treatment to try something new, until she insisted that nothing change until there was a problem. Another friend lost his life when his oncologist wouldn’t re-test his mutation after his cancer started growing again. By the time she tested, it was too late. He wasn’t well enough to travel to the clinical trial that he qualified for.

 Another woman asked her doctor for molecular testing of her cancer. He was incensed that a mere patient would think she knew more than he did about lung cancer, and he refused. She fired him.

 There are so many stories I have heard. They all point to the same things:

·         Check the credentials of your doctor and your clinic.

·         Make sure you have a lung cancer specialist. A specialist in six different cancers is not a specialist.

·         Get molecular testing.

·         If the cancer starts growing again, get molecular testing again.

·         Do your own research, either by piggybacking on what other survivors have learned, or looking at the data yourself.

·         Get a second opinion. Your doctor may be brilliant, but that doesn’t mean that their judgment is flawless, or that they would make the same choices that you would.

·         Make waves if you need to. It’s worth risking hurting your doctor’s feelings if it means that it may save your life.

·         Treat your doctor like he or she is your consultant.

·         Get empowered by getting knowledgeable. Check out the Resources tab. Below the survivor blogs is a master list of 21 professional websites, along with a description of what each one offers.

 LAST THING: I will be on the Portland Today show on KGW TV this coming Monday, November 14th, from 11:00-12:00 as part of Lung Cancer Awareness Month. Watch it if you get the chance!

 Love,

 Dann

My Tribute to Craig

Friends and Family,

Now that I have had a few days to think about this, I can move past feeling just the loss of my friend, and begin to celebrate his life. After all, Craig Blower not only impacted my life; he may also quite possibly have saved it.  And in the telling of the story of our friendship, you may see some things that could make a difference for you, too.

It was an unusual way to start a friendship. Genevieve and I were in San Diego for Christmas, where her extended family gathered every year. With time to kill, I started surfing the web, and came across a cancer blog. The guy had very similar experiences to my own, and he was a pretty funny writer. I instantly liked him. I discovered that he lived in San Diego. I couldn’t pass up this opportunity, so I reached out to him through his blog and arranged to meet for coffee.

We hit it off right away. Neither of us had met anyone else with lung cancer, and we both had adenocarcinoma with the EGFR mutation. We started on Tarceva at about the same time, and we even had radiation to our hips at about the same time. We swapped stories about our remarkably similar treatment course, our families, and our lives.

Over future visits to San Diego, we included our wives – both who are wonderfully supportive – in this expanded friendship. The more we talked, the more similarities we found. Not just age and treatment, but even things like going to Hawaii every year, remodeling our kitchens within months of each other, and being the youngest child in our large families before a younger sibling came along years later. Craig came to call all these freaky similarities a “Lincoln-Kennedy thing.”

Eventually, Craig’s treatment with Tarceva stopped being effective. His oncologist referred him to UCSD to participate in a new clinical trial. That is how Craig came to be the first person in the US to get started on a new targeted genetic treatment, AZD9291 (now Tagrisso).

The results were remarkable. After just six weeks of treatment, his new oncologist took his before/after CT results on a road show to other oncologists. Until that point it had been challenging to recruit treatment subjects, but Craig’s Fabulous Makeover results led to a quick spike in enrollment in the study.

Almost too quick, as it turns out, for me. Just a couple of months later, CT scan results showed new growth of my own cancer. My oncologist was scrunching up his face, looking at the floor, and telling me he really didn’t have any good options for me.

“What about AZD9291?,” I asked.

“That’s in clinical trial now?”

“Yes,” I said. “In New Hampshire and San Diego.”

“San Diego is a thousand miles away.”

That’s right,” I said.

I wasn’t going to let a thousand miles, or my oncologist’s lack of knowledge about this clinical trial, stand between me and life-saving treatment! As soon as I got home, I called Craig and got the contact info for the clinical trial. Early the next morning, he called to tell me that the clinical trial was going to stop taking new applicants very soon, so I had better act quickly. It turns out that I only had until the end of the day to submit all of my medical records for the past eight years. With an enhanced sense of urgency, I made the deadline by the skin of my teeth. Sixteen months later, the treatment is still working for me.

That wasn’t the last time Craig had a major influence on my life. The following Spring, I saw that there was a conference in Washington, D.C. called the LUNGevity HOPE Summit. It sounded interesting, but I told Craig that I would be more interested if he went. The expense was also a factor. He gave me good news on both counts: He was planning to attend, and I could apply to go to the conference with all expenses paid, since it would be my first time attending.

That tipped the scales. I went to the conference, which inspired me in ways I didn’t expect. After meeting all those incredible survivors who were doing so much for the cause (not to mention getting a better sense of all the things that Craig was doing), I came away with more hope, and with a stronger sense of how I could be an advocate for lung cancer myself. Since that time, I have become actively involved with www.lvng.org and their Facebook LVNG With Lung Cancer community, I have been interviewed for a couple of oncology waiting-room newspapers and magazines, done public speaking, and volunteered with the American Lung Association. Had Craig told me he wasn’t going to the HOPE Summit, and not mentioned that I could go for free, all of these wonderful changes in my life might not have happened.

A year ago, Craig started getting some growth in his cancer again. At first it was questionable, but from the beginning it was enough to worry him that he could get kicked out of the clinical trial. Each scan after that showed a little bit more growth here, then a little more there. Craigshared that he contacted one EGFR guru, but the specialist didn’t have time to see someone for a one-off consultation. It seemed as if Craig started hanging on even tighter to his only lifeline, which was the clinical trial he was in. His oncologist didn’t have any new ideas for him, other than to radiate new spots as they popped up.

While Craig's oncologist was telling him there was nothing else out there, I was feeling pretty helpless as his friend. In desperation, I started urging him to get a biopsy and a second opinion. The biopsy would tell if another targeted genetic treatment might work for him, and the second opinion might tell him if there was some idea his doctor had missed. However, given the choice between trusting your oncologist, who could kick you off the treatment that you believe is saving your life, and following the advice of a friend with no medical training, it’s easy to see why he stuck with doctor’s orders. Eventually his doctor did a biopsy, and they found that he had a genetic mutation that could be treated in a new clinical trial. However, the trial was in Boston. Craig scheduled his initial appointment, but it was already too late. By then, his health was too compromised to travel. As Kim said around that time, he was fading in and out of lucidity from the pain meds.

It was right at that time, a week before Craig passed, that I had another appointment with my oncologist in San Diego. Genevieve and I arranged with Craig’s wife, Kim, to see Craig on our way from the airport to my appointment. It broke my heart when she told me on the phone that Craig was worried that he would disappoint me, because he didn’t make it to Boston. I made sure to tell him that I was sorry he wasn’t able to go, but that it would not have been humanly possible to get there.

I also thanked him for quite possibly saving my life, but he dismissed it with a wave of the hand. “You would have found another way.”

I am pleased to say that I had better success with his acceptance of my final words to him:

Thank you for being my friend.

Love,

Dann

*** A Special Request - UPDATED ***

I'm participating in an event to raise money to fight lung cancer - and I need your help! 

I will be attending the LUNGevity Foundation's National HOPE Summit in Washington, DC, in May - it's a special conference just for lung cancer survivors like me. Since I was able to raise $1000 or more in donations, LUNGevity will cover my travel expenses, including US round-trip transportation and hotel accommodations. However, I have raised the bar, and I am trying to raise as much as I can for LUNGevity. AND NOW THERE IS AN ADDED INCENTIVE.

THIS IS THE NEW PART: The wonderful, compassionate, and very supportive partners at the real estate brokerage in Portland where I work, Macadam Forbes, are offering a MATCHING GRANT. FROM TODAY FORWARD, THEY WILL MATCH ANY NEW DONATION, DOLLAR FOR DOLLAR, UP TO $500. If you give $10, you will be raising $20 for LUNGevity. If you give $100, you will be raising $200.

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: http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15681

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: https://www.youtube.com/watch?v=iAqSwUbw_v0. 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.

Love,

Dann

*** A Special Request***

I'm participating in an event to raise money to fight lung cancer - and I need your help!  

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: http://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=15681

AZD9291 Gets Approved!!!!!!!!!

I am absolutely thrilled to tell you that AZD9291 has been approved by FDA! This drug finally has a name, Tagrisso (osimertinib). The drug is approved for people who have the EGFR mutation, which also has the T790M mutation. The official FDA press release can be seen at http://1.usa.gov/1H0iCbY.

Since there were only 411 people in the world in the Phase II trial that I was in, I feel extremely fortunate to have already benefited from this drug for the past 13 months. I am also thrilled that my own success has added a small fraction to the research that has proved this drug to be so successful that it was approved in the near-record time of two and a half years!

Better yet, I am now excited about all of the people who will now be able to extend their lives, and their quality of life! Today feels like a holiday! 

To all of the researchers at Astra Zeneca, and all of the clinical research teams, including my own team at UCSD, I want to express my deepest gratitude for your extraordinary work. Because of you, I am still alive. Now, so many others will be able to say the same.    

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

Turtle Rescue, Meet Your Ambassadors, and More

Friends and Family,

What a week! First, there were turtle rescues.

No, not THAT kind. Rescue OF turtles, not BY Ninja Turtles. The second option would stretch believability even more than if I told you that I was still alive after nine years with lung cancer.

No, I'm talking about rescuing REAL turtles. That means we're back in Hawaii again, taking our usual morning beach walks. Only this walk was far from usual. First, we  came across this distressed-looking adult turtle, out of the water, baking in the sand.

While Genevieve called the Turtle Rescue hotline (yes, there is such a thing in Hawaii), I found a five gallon bucket and poured ocean water on the poor turtle.

Meanwhile, the Turtle Rescue man told Genevieve that finding this turtle on the beach either meant that it was in distress, or that it was taking a nap.

When I poured the bucket of water on the honu (Hawaiian for turtle), it immediately did a 180 degree spin in the sand and headed for the ocean at full speed.

So depending on your point of view, we either rescued this poor turtle, or made him grumpy by waking him up from a good nap.

Next, on the same walk, we come across a family with a young boy that has been stung by a Portuguese Man-of-War, which is a tiny blue bubble of a creature with a three-foot tale that feels like a bee sting on a string.

The boy had been touched on the leg, chest and arm, and welts were forming. Genevieve instructed us to get the white berries off the naupucka shrub that grows just about everywhere along the beach. We gathered berries, mom rubbed them in, and the boy immediately got some relief. Genevieve told them to go to the ER if symptoms worsened or he had difficulty breathing. The mom thanked us for the instant relief, and for saving the family a trip to the ER.

This stuff never happens, but this day EVERYTHING was happening. We were almost back to our beach house, when we saw a fisherman struggling to get his line out of the water. At first we thought he had a snag, but eventually we saw what he was reeling in: You guessed it. A turtle.

I offered to help. He reeled it in until I could grab the turtle and lift it by the shell. I held it while he ran back to get his pliers, and then pulled the hook out of the poor turtle's mouth. Once it was out, I let the turtle loose in the water, and he swam off at Olympic speed. He didn't even say thank you, probably because his mouth was too sore.

So I'm starting to think that this is why I'm still alive: To rescue turtles. But then Genevieve reminds me that we have been invited to be ambassadors.

Sounds impressive, doesn't it? Now you're wondering, "ambassador of what?"

I guess "Cancerland" would be the best answer. This is four-day speaker training program in Chicago, so that Genevieve and I can become more skilled at public speaking, and then speak at regional cancer-related events when the opportunity presents itself. Now THIS has our full attention. I can't think of anything more fulfilling than providing hope and inspiration for other people that are going through what we're going through.

Last, but number one on my mind for the past couple of weeks, I want to give you an update on my friend Craig Blower. Craig and I have been on parallel paths with Tarceva and then AZD9291 for the past almost three years, although Craig started AZD9291 a few months before me. He has had growth in his existing spots, and metastasis to some new ones. The treatment course is unclear at this time. He is asking for virtual hugs across the miles. If you are so inclined, visit https://craigblower.wordpress.com/ and say hello. It would mean a lot to him, and to me as well.

Love,

Dann

September Scare

Friends and Family,

It's that scary time of the year again. No, I don't mean it's time to go back to school. It's the scary anniversary time.

Nine years ago, close to this time of year, I went in for an X-ray of a sore back. The X-ray was photo-bombed by a tumor in my lungs, so I started chemo, and had the offending tumor and the lobe around it removed.

Five years ago, close to this time of year, we were happily enjoying almost five years of my being cancer-free, when a routine scan showed that the culprit had returned - in spades. The inside of my lungs looked like fireworks had gone off everywhere. There was too much to remove, but with multiple treatments, we kept it at bay, and even shrunk it.

Last year, at about this time of year, Tarceva stopped working, and the cancer started growing again. My own oncologist could see no good treatment options. I will say this: He should never play poker. It's a good thing I found the AZD9291 clinical trial without his help.

So, after getting bad news in three different years at the same time of year, Genevieve and I were having one of the worst cases of scanxiety we've had since almost the very beginning of this ride. Compounding the fears, results are now being published about how long AZD9291 typically works, and it's usually just about as long as I have now been on it.

Throwing me further off balance, my buddy Craig Blower https://craigblower.wordpress.com has had continued slow growth of his cancer while on the same drug as I am. I'm still on the edge of my seat waiting to find out how his last scans turned out. Meanwhile, Kim, a fellow Portland lung cancer blogger http://aquariusvscancer.com/author/kimmywink/ that I met at the HOPE Summit in May, is going through brain radiation. Compassion is not serving me well as I worry about these two, and my concern for them hits a little too close to the bone. 

Yes, we panicked a little. Rather, Genevieve panicked a little, while I was ping-ponging wildly between confidently believing that I'm going to be around until I'm 90, and worrying that I will be in hospice within a year. 

That makes the results from last week's scan all the sweeter. Yes, there has been no growth in the cancer! Now I'm SURE I'm going to live until I'm 90!

...at least until the next scan. 

So what have I learned from this? There are limits to what living in the present can do. Realistic fears are still going to creep in from time to time, and maybe that's not such a bad thing. Sharing our fears has brought Genevieve and me even closer, which helps me to not feel so alone dealing with this. Sharing with you helps in the same way. It also puts me in touch with my own humanity. All my hopes and fears bubble to the surface and remind me that I am alive, and how much I value this life that I have. 

I hope you are in touch with the treasures in your own life. Maybe you can pull it off without a heaping dose of fear.

That would be pretty great, wouldn't it?

Love,

Dann

If Your Fate was in an Envelope, Would You Open It?

Friends and Family,

I had it right there in my hands. Should I open the CT scan report now to find out if the cancer has grown, or wait until tomorrow, when I see my oncologist in San Diego?

That’s what I was asking myself on Monday. I had my CT scan at OHSU (Portland) in the morning, and then came back in the afternoon to pick up the digital images (too big to email) along with the report from the radiologist. This is S.O.P., now that I am having my CT scans in Portland the day before we go to San Diego for the clinical trial.

What would you do, if you had your fate written down in an envelope? Would you open it? Burn it?

This wasn’t a question that would go away. Genevieve and I slept with the report five feet from our bed. We left for the airport at 3:30 in the morning, and the report was in my backpack, calling me. Flying down, I could hear a little voice from the overhead bin. “You don’t have to wait.”

I grabbed my backpack off the plane, and it was in my hands again. I didn’t let go until we rented a car and dropped it off at the hospital for my doctor, three hours before my appointment.

Then we waited.

I’m entering the time window when AZD9291 stops working for some people. This time window stays open roughly as long as Tarceva, but it varies a lot from person to person. For example, I met people at the HOPE Summit in DC this May that had been on Tarceva for seven years.

Since there is no clear treatment path after this, I don’t know what will happen if/when this stops working. The longer I stay on it, the more time we have to find the next miracle treatment.

At long-long last, we met with my oncologist. He told us the spectacular news we were waiting to hear. The cancer hasn’t changed a bit. We have six more sweet weeks of life to be grateful for!

OK, be honest. Up until now you’ve been thinking, “Dann, are you NUTS? Why didn’t you open the envelope?!!!” Although there may be a little (little?) madness, there’s some method in it. I’ve learned this lesson the hard way.

Nine years ago, when I was first diagnosed, I had chemo and surgery, and became cancer free. However, I was a lot more on edge about the whole death-around-the-next-corner thing than I am now. A year later, I got a call from my primary care doctor. He said my new CT scan had shown a “hyper-dense nodule,” and wanted me to come in for an ultrasound to confirm if it was cancer. Genevieve and I both went into shock. I can still remember where we sat when we discussed it, and feel the pit in my stomach. Fortunately, my appointment with my oncologist was only a few hours later. He told me that the report had been misread by my primary care doc (who has never butted in to my cancer treatment before or since). There was no cancer, and as it turned out, there wouldn’t be, for another four years.

THAT is why I don’t want to see the reports before I talk to my oncologist. A little bit of knowledge is a dangerous thing. Dr. Patel was complimenting me for my “will power” (won’t power?), but this was really about not setting myself up for unnecessary drama.

I have enough of that already, don’t you think?

Here’s hoping that all of your surprises are good ones.  

Love,

Dann

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.

Things are going to H@%%

Friends and Family,

That four-letter “H” word is back on my mind again lately, and it’s not the one that would have gotten me in trouble in grade school.

About three and a half years ago, my company had new pictures taken of all of the brokers. Since I was just about to start chemo, the timing for a picture wasn’t the best. Should I have my picture taken with a full head of hair? If I did, then people who first saw my picture on our website wouldn’t recognize me when they met me and my shiny, pale, bald, head in person.

So should I shave my head bald? That would be confusing later, after I finished chemo, and my hair grew back.

So which H-word is the real me? Hairy or hairless? And why is this so important? Sorting this out was giving me a bad hair day.

I decided to compromise. I gradually cut my hair shorter over a few weeks, so that everyone – including me – could get used to it. Just before I had my picture taken, and before chemo kicked in, I had my final haircut. This cut left little to the imagination.

After chemo was finished and my hair grew back, Greg, one of the partners, asked me if I wanted to have my picture taken again. “No,” I said, “I like the picture. Let’s leave it as it is.” Greg kept asking over the next three years. Although my answer didn’t change, Greg was right to wonder.

I worried that I’d soon be back in chemo, and once again bald. And if that happened… well, before long  they may not need any picture of me on the website. See where I’m going with this? There’s more meaning to hair than hair. I had more doubts about my future than I would care to admit. It was a lot like  a couple of years ago, when I thought that there was no point in buying new underwear if I didn’t think I’d be around long enough to use it.

So why did I finally ask to have my picture retaken? It’s because of that H word. No, I’m not talking about H@%%. I’m also not talking hair. I’m talking hope.

Running laps around your life expectancy a few times can do that for you. So can having great success on a new clinical trial. Having amazing doctors that have creative ideas about how to deal with lung cancer can give you hope too , even if no cutting-edge treatments would be a fit in the near future. My future’s so bright, I gotta wear shades. Maybe it’s so bright because of all those images of rays of light zapping the cancer cells that all of you have sent me.  

Here’s more reason for hope: I have been on three treatments that didn’t even exist for lung cancer patients the first time I went through cancer. Tarceva, Avastin, and AZD9291 are all new. How can that not make you more optimistic?

You can probably even see it in my picture. You know, the new, permanent one.

Maybe I can even relax a little. You know, let my hair down. Not take things so seriously.

I hope there’s reason for hope in your life, too.

Love,

Dann