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

Confessions of a Smuggler

Friends and Family,

I've written a lot about our trips to San Diego, but there is one part of it I've never shared. It's that I'm actually in two clinical trials. 

On our first trip down to San Diego, Dr. Hussein, a researcher, asked me if I would join a second study. This one was simple: All I needed to do was spare a little extra blood and urine. He was working in conjunction with other clinics to develop "liquid biopsies." 

The plan was to track cancer cells in blood and urine, with the goal of being able to identify when the cancer was dying off or growing. If successful, this could decrease the need for CT scans dramatically. So why wouldn't I want to help this effort? 

"There's more," Dr. Hussein said. Then, as part of his sales pitch, he showed me a CT scan of someone's lungs a week before starting AZD9291 (AKA Tagrisso), and a week after. The difference was remarkable. The amount that the cancer had shrunk within the first seven days was stunning. Now that I was properly motivated, he asked me if I could give him consecutive samples, so they could track the dying cells in my urine. Twenty-four days in a row. 

Sounds easy, right? Did I mention this was in San Diego? We were flying Spirit(less) Airline at the time, the airline that even charges extra for a middle seat in the back row if you so much as ask to choose your seat. You can bring a SMALL carry on bag, but even a medium bag brings a hefty penalty. So my first challenge was smuggling a case of 24 urine bottles onto the plane without getting hit for a baggage fee. I put my backpack on, and stayed facing the gate attendant until I was almost walking backwards to get on the plane, so the thickness of my backpack stayed hidden. Yes, I admit it. I'm a big, bad, urine bottle smuggler.

After that, all I had to do was collect a daily sample, and keep it in my refrigerator. For three and a half weeks, we made sure to grab anything needed out of the fridge, so our guests wouldn't open it and be tempted by the little bottles of apple juice. Or think something crazy, like that we were storing urine in our refrigerator. Then we had to ship it. I was pleased to find out that there is no law against shipping a case of urine by UPS or FedEx.

All this has now paid off. I am pleased to say that a liquid biopsy has recently been approved for testing for EGFR, and the approval for my mutation. The test for T790M has now been proven to be effective based on my trial, so approval should be coming along soon. So how will this be used?

This is the exciting part. Dr. Hussein told us that, so far from his experiences, the liquid biopsy has detected the growth of the cancer one to four months BEFORE it showed up enough to be visible on a CT scan. 

Once the full compliment of these tests is available, the possibilities get even more exciting. When someone is stable, they may be able to go off all meds, and not start again until the cancer starts growing. No pills means no side effects, which is fantastic. Also, with pills that cost $200-$300 each, this is no small savings.

Better yet, we won't have to wait six to twelve weeks before having a CT scan to see if a new med is working. We'll know almost in real time. As it is, if the med doesn't work, the cancer continues to grow. One or two unsuccessful treatment attempts in a row can be fatal, because the cancer has too much time to grow and metastasize before we know that treatment didn't work. There will be more room for multiple trials when the results come back before the cancer has grown much.   

We'll know which med to give without needing a new, invasive biopsy every time. This will also speed up research, since we'll get feedback on what is and isn't working much quicker. That means new and better meds will get on the market faster. I love where this is going! 

For all these reasons, I'm glad I made the sacrifice to become a big bad urine smuggler, and to keep all that apple juice in our fridge. And if you come over to visit, just know that our fridge has been scrubbed very, very carefully.

Love,

Dann