CT Results + More: Feeling Blue and Seeing Red

Friends and Family,

We have another trip to San Diego this past week. The results of my latest CT scan are, incredibly, unchanged. I have beat the odds… again! So much has gone right:

  • There was a 50/50 chance that I had the right mutation to get on AZD9291 (now Tagrisso), and I won that lottery.

  • This treatment is effective for 70% of the people. Guess which group I fall into? J

  • AZD9291 is usually effective for about 13 months. I reached 13 months in November, and I’m still doing great!

  • UCSD will participate in the clinical trial for the next generation treatment (yesssss!!!!!), and will hopefully have the trial before I need it.

I have every reason to be deliriously happy at this point. So why am I feeling so blue, and seeing so much red? I even yelled at someone the other day, and had to restrain myself from doing the same with a second person. Of course, it wasn’t called for in either situation. Put those two colorful moods together, and I have turned into one, big, purple, bruise.

It feels so wrong to have everything go so right, and yet still be feel this bad.  There’s no reasoning with feelings, however. Trying to change your feelings is very much like trying to change your spouse: It ain’t happening! Everything works out so much better if you just listen. (No, I’m not sucking up to the women who read this.)

Okay, I’m listening. Number one, I had my third annual torn-disk-in-my-back event. I can’t reach below my knees in the morning before I’ve iced my back and had a pain killer or two. Saint Genevieve has been putting on my socks and shoes every day for more than a month.

At least this time, I know how I did it. I’m sure it looked like I slipped on a banana peel when I fell flat on my back. Ah, but this time I thought I had the problem licked. Since I have my pain management doctor on speed dial, I got a cortisone shot  in the pesky disk within a lightning-fast two weeks. But after a little progress, things started getting worse again. I’m scheduled to repeat the procedure this Friday.

I have been discouraged. It will pass, but in the meantime I’m cranky! I have to remind myself that moods feel permanent while you’re in them, but they pass. This situation is not permanent. An old friend of mine used to say, “I can put up with anything, as long as I know it’s not permanent.” Good reminder, Richard. Thank you!

Enough whining about back pain. It’s not the big issue. The bigger one: When Genevieve and I went to San Diego last week, we visited my friend Craig. Craig started on AZD9291/Tagrisso a few months before I did, but treatment ceased being effective for him, so his only treatment is for pain management. Breathing difficulties and pain meds made it difficult for him to communicate with us. My sadness for him completely overwhelmed the joy at getting my own good CT scan results.

Even that feels a little better, however. Craig’s daughter guest-blogged for him today (https://craigblower.wordpress.com/), and his terrific attitude and heart showed through. This has done more for my mood than a (successful) cortisone shot!.

There’s always a lesson in there, isn’t there? The lesson for me is that, although I can’t change my feelings, I can change my attitude. And when that happens, my mood will follow.

Now that I’m listening, and my attitude is improving, and this big purple bruise is beginning to fade.

Thanks for listening!

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 amazing partners at the real estate brokerage where I work, Macadam Forbes, are offering a MATCHING GRANT. 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.

Outing Myself

Friends and Family,

There’s something I’ve often thought about writing about, but until now, I didn’t have the courage to share with you. But after over nine years of living with lung cancer, I am finally ready to “out” myself.

No, I’m not going to tell you that I am going transgender, or that I just discovered that I’m not white. I’m not coming out as a closet Donald Trump supporter, either. My coming out is nothing quite so trendy or colorful. It’s just a lot riskier for me, because it might affect what you think of me.

You all know me as the guy with the healthy lifestyle: Lots of exercise, healthy vegetarian diet, positive attitude, and taking in all the love and support that comes from you, and in particular, Genevieve.

What most of you don’t know, is that 35 years ago, I used to smoke.

Very often, the first knee-jerk response to telling someone that I have lung cancer is to get the stunned question, “Do you smoke?” I usually reply, “No, and the kind of cancer I have is unrelated to smoking. 18% of all lung cancers are among people who have never smoked.”

I admit that I’m dodging the question. What they really want to know is, “did you ever smoke?,” because, in their minds, lung cancer = smoking.

But telling people would confuse the issue. I learned from my oncologists and pulmonologists that my smoking history had nothing to do with my lung cancer. I came to the same conclusion after years of internet searches. My smoking history was too long ago, and too brief (off and on through college), to have been a culprit. As confirmation for what my doctors told me, the specific genetic mutations in my cancer are not associated with smoking.

But so what? Why not tell people that I used to smoke anyway?

I’ve given you the rational reason, which is that it just confuses the issue, and provides an educational moment. But the much harder reason is emotional.

When I was first diagnosed, I asked myself, “what did I do to deserve this? How did I cause it?” I blamed myself. In my cause-and-effect world, it was the only way I could make sense of it. The guilt was overwhelming.  Never mind the facts: If I had cancer, it must be my own fault. Guilt being one of my strong suits to begin with, this time I had it in spades. If I tried to explain that I smoked, but that it had nothing to do with my cancer, I would expect people to doubt me… and that’s all it would take for me to pile more guilt on myself.

If the natural response is to blame yourself, think how much harder this would be if smoking really did cause your cancer. This is a burden I wouldn’t wish on anyone. Any nobody - nobody - deserves lung cancer.

It’s easier to give smokers and former-smokers a break when you look at how people start smoking. Using myself as an example, I grew up in a house where both of my parents, and all three of my older siblings, smoked. I tried smoking briefly when I was twelve, but didn’t get hooked until college. There, I was hanging out with other students in bars and smoking after night classes, and taking “smoke breaks” with my friends at the restaurant where I worked. All that stuff about role modeling and peer pressure can be seen in action right here.

But there’s more. Did you know that our judgment doesn’t fully mature until we’re well into our twenties?(1)  That explains a lot of early-twenties behavior, doesn’t it? We are more susceptible to bad judgment, such as mine was (and there are soooo many more examples), before we have fully grown up. Tobacco companies have marketed to teens and young adults (remember Joe Camel?), and they get hooked before their judgment matures. How many people do you know that started smoking after the age of 25?

Now, put these two pieces together: Smoking is as addictive as heroin, and we get addicted before we have reliable judgment.

What’s so odd is that smoking causes so many other problems, but there isn’t the same knee-jerk blaming response when the diagnosis is something other than cancer. If someone gets heart disease or has a stroke, can you imagine asking if the person smoked? Would you ask if someone had an aneurysm, COPD, or diabetes? How about if they had osteoporosis, rheumatoid arthritis, age-related macular degeneration, or cataracts, or if their asthma symptoms got worse?(2)

So let’s have some compassion for the smokers and former smokers, whether their smoking was the cause of their cancer or not. Let’s do it in the same way as we take it easy on people with heart disease and those who have had strokes. We can, and should, work to prevent all these health problems. Smoking prevention and smoking cessation strategies are critical. So is routine screening of people with smoking histories, so that cancers can be caught when they are far less advanced, and the treatment outcomes are so much more promising.

I have chosen to “out” myself now, because I have made too many new friends with lung cancer that are former smokers, and who have suffered through tremendous guilt and shame that should never be a part of dealing with a life-threatening disease. I have heard stories of blunt comments that are at a minimum thoughtless, and at times outright brutal. Isn’t having cancer enough, without adding the accusation that it is self-inflicted?

I want to make clear that you, my friends, have been wonderfully supportive. I have not had the soul-wrenching experience of so many of my peers. I have had a few questions that I chalked up to simply being too stunned at learning that I have lung cancer to ask a better question than whether I smoke. So, just to make sure you’re not caught without a supportive response if you’re ever in this situation again, here are a few options:

  1. I’m sorry to hear that. How are you handling it?

  2. What are the next steps?

  3. Do you have people around you to support you?

  4. What can I do to help?

It’s time to end the stigma. Let’s replace it with a little compassion.

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

  1. 1.C. Lebel, C. Beaulieu. Longitudinal Development of Human Brain Wiring Continues from Childhood into Adulthood. Journal of Neuroscience, 2011; 31 (30): 10937 DOI: 10.1523/JNEUROSCI.5302-10.2011

  2. U.S. Department of Health and Human Services. The Health Consequences of Smoking—50 Years of Progress: A Report of the Surgeon General, 2014. Atlanta, GA: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, Office on Smoking and Health, 2014.

LUNGevity HOPE Summit: Prepare to Be Inspired!

If you are a lung cancer survivor or support person, this is an inspirational opportunity that is hard to pass up. I have been to a number of cancer runs/walks, fundraisers, and workshops, and for me, none of them have topped the LUNGevity HOPE Summit for feeling part of an empowered and upbeat lung cancer community. The latest research, Q&A with an oncologist, 25-year survivors, awe-inspiring advocates - This HOPE Summit has it all. And even better, if this is your first time, it is FREE. This includes transportation, hotel accommodations, meals, and the conference itself. The Summit is April 29th - May 1st.

My writing style may be extroverted, but I felt very uncomfortable going to a conference where I knew just one person, plus a few acquaintances I had met online. That awkwardness lasted less than five minutes. We are all in the same boat, and contrary to what I expected, I DO like being part of at least this one group that would have me as a member.

For more info about the HOPE Summit, go to http://bit.ly/1Uxh1uU.

If you have already been to the Summit before, you can go again for FREE if you raise $1,000 or more.

I have now raised over $1,000 with the help of many terrific people who have made generous donations, but I am upping my game. If you would like to donate to support lung cancer research, education and advocacy, please click http://bit.ly/1VX64VB.


World Cancer Day: My Tribute to Katie

Friends and Family,

Today is World Cancer Day! To mark the occasion, several of my lung cancer blogger buddies agreed that we would blog about relationships with people that have other cancers. You can find a link to the stories HERE.

When we picked this topic, I knew who I wanted to write about. This woman planted the seeds of change in my attitude about living with cancer, and it happened long before I was ever diagnosed.

Back before I got into commercial real estate, I worked in mental health. (Don’t ask. Just know that I got my own mental health back when I left the field.) Katie Hartnett worked with me at Providence hospital, where I coordinated the psychiatric admissions, and she ran the cancer counseling program. My job also included making referrals to mental health providers. That’s how Katie and I met: Sometimes she saw people that needed counseling for more than cancer, so I helped her with referrals. Sometimes the people that called me for mental health referrals needed counseling for their cancer, so I referred them to Katie.

We had known each other for years, before a five-minute conversation with her changed how I viewed the world.

One day, I ran into her Katie in the halls. After some brief chit-chat, she said, "I don't know if you've heard, but I've been diagnosed with cancer. It's a Stage IV cancer that is so spread throughout my body that they can’t even tell where it even started." I awkwardly admitted that I had heard the news. Then she said, "Isn't it a blessing! I've had all these wonderful patients over the years to teach me how to deal with it!"

What a rush! When we finished talking, I walked away thinking, "WOW! If I ever get cancer, THAT is the kind of attitude that I would want to have!" What an inspiration!

Needless to say, when I was first diagnosed with cancer seven years later, Katie was one of the first people that I contacted. She was still alive, and cancer free. With that kind of attitude, of course she was!

The first lesson I learned from Katie had been about gratitude, and finding the blessings in any situation. But seven years later, I learned more.

One of those lessons was when she told me that, when people are diagnosed with cancer, she is much more concerned with how the family members are coping than she is with the person who has cancer. I have to admit that I didn’t get it at first, but over time it became more and more clear.

The person with cancer gets all of the support and attention, while the family members feel powerless. Our loved ones have the same fears as we do, but no control over what happens. They also have a completely separate set of fears: “What will my life be like if my loved one dies?” There are fears of being left alone, of financial difficulties, of not knowing how to manage some things, of how to support the other family members. Their life could change dramatically, but in most circumstances it doesn’t feel right for them to make their own needs the center of attention. “How can I worry about my problems while my loved one could be dying?” But the needs are real, and critical to a full life. They don’t even want to talk about it with the person who has cancer, for fear that they will be adding a burden to a loved one fighting for survival. How lonely that must get at times. So yes, I understand how important it is that my own loved ones, particularly Genevieve, are listened to, and supported.

Katie also left me with another lesson, but I’m pretty sure she had no idea how much this one meant to me. She said it so off-handedly that I was sure that she had taken the idea for granted by this point. She said, "I've worked with many people who dealt successfully with cancer. Some of them survived..."

What? You mean you can deal with cancer successfully, even if you don't survive it?

My first instinct had been to believe that the math was pretty simple: Living = success, and death = failure. But when you think about it, that's pretty bad criteria. That would mean that we're all going to fail, because none of us will live forever.

De-coupling success from survival excited me. If you can only succeed by living cancer-free, then having cancer that was considered terminal meant I was slowly failing. What a defeatist way for anyone to live the last part of life! Not gonna do it!

I am now free to succeed at living with cancer, rather than to fail if I die from it.

So how do you succeed at living with cancer? The answer may be different for different people, but one of the answers for me is this:

Treat cancer as a growth opportunity.

I'm learning new ways to grow every day. I find more things that bring me joy, like tiny wind-up toys, and listening to my granddaughter tell me about her favorite teachers. I'm learning more about accepting myself, such as accepting my flaws without being self-critical. My relationships are getting deeper and more satisfying. I keep finding more that leaves me feeling grateful, like the plants and flowers I see when I walk at lunchtime, and coming home in the evening to a warm house on a cold wet day. It keeps getting easier to find what brings joy, or beauty, or playfulness to my world.

Does that sound more like failure or success? Slow destruction or growth?

Thank you, Katie, for sharing the gift of perspective.

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

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

New Scan Results + Clinical Trial Decision

Friends and Family,

After our usual pre-scan hyper-sensitivity to every indigestion burp, cough, or body ache, I kicked my anxiety into overdrive by getting a cold/flu. It gave me all the symptoms of lung cancer gone rampant: Difficulty breathing, heavy chest, cough, feeling not so great. Then we flew to San Diego, where Dr. Patel gave us the good news: No new growth! We’re celebrating!!! We are now a couple of months past the average time that Tagrisso usually remains effective, which leaves me even more grateful. I have another six weeks of sweet life, and have bought another six weeks of time for the next new drugs to be developed before I need them. Clinical researchers out there, you are my heroes! Keep up the great work!

A couple weeks ago I asked what you would do if you had the choice of ending the clinical trial, but continuing to get the same medication in my home town. I thought I had probably covered the major topics pretty well, but found that there was much more to consider after listening to your thoughts. Thank you for contacting me through every means imaginable to share your thoughtful contributions! If you just want to know what I decided, skip straight to the bottom of this email. If all the facets of this decision fascinated you as much as they have me, keep reading and I’ll share what I learned from you.

First, Tagrisso is so new that the insurance company may not cover it, or may not have a contract with a pharmacy that carries it. They may also have a much higher co-pay for a new drug. This could critical, since the reported cost is $425 per pill. That’s right: $425 per day. I am very fortunate to have an insurance plan that has a maximum out-of-pocket expense. I usually meet that annual maximum out-of-pocket around January 7th, :-) and then I’m covered 100% for the year.

But what about those who do not have such great coverage? Fortunately, Astra Zeneca has a patient assistance program. See  http://www.astrazeneca-us.com/medicines/help-affording-your-medicines/ if you are in this boat. I believe other drug companies have similar programs… Worth checking out.

Several people told me they would get out of the clinical trial as soon as possible, to cut radiation exposure in half, by having half as many CT scans. Ashley, my clinical trial coordinator, petitioned the study sponsor to decrease the scan frequency for everyone. I’m impressed, and very grateful! Thank you, Ashley! Hey, I know it’s a long shot, but I appreciate the advocacy!

A friend and fellow blogger, Linnea Olson, actually contacted her study sponsor herself. Way to be your own advocate, Linnea!

But how much radiation is too much? Fortunately, I know someone who has spent years measuring radiation levels in workers at a nuclear-related facility. She can’t give an accurate response without knowing the radiation dose levels of the CT scans, but her best estimate is that the dose is still less than the daily level of radiation considered safe for workers in the nuclear industry. I don’t know whether that makes me feel relieved, or worried for the nuclear workers. All the same, it would be helpful to get dose info from a radiologist who does CT scans. I’ll work on it.

Several people mentioned the advantages of staying close to clinical researchers who are on the cutting edge of treatment. How could I replace that?

The length of the clinical trial was questioned. Dr. Patel has no idea how much longer the trial will continue. However, I have the choice of exiting the trial at any point.

Several of you mentioned the importance of contributing to research that affects the lives of so many. More data will help guide more research, and benefit more people.

The travel expense is not the biggest issue, but one that seemed reasonable for the drug company to cover at this point. The cost is roughly the equivalent to the price of one pill ($425) every six weeks.  UCSD told me that they never go back to the sponsor to ask for travel assistance. So…. I bypassed the system! I have my own Astra Zeneca connections, so I made my own request. We all have to be our own advocates.

I asked Genevieve how this impacts her, since she makes every trip with me. She dismissed the question as trivial and irrelevant. That says a lot about love, doesn’t it? She’s a keeper!

One friend, Joe, had a more noble take. He said that it’s good to stay with the girl that brought you to the dance, and make sure she gets home safe. In other words, since this clinical trial saved my life, perhaps loyalty should be a consideration.

Thank you  all for making me consider so much more, and in so much more depth. It makes me feel more comfortable with my decision… to stay with the clinical trial. You helped me crystalize that my biggest concern was the radiation, which I feel a little better about now. You also helped me to decide just how important it is to contribute to the research, and to realize that the most important factor for me is sticking close to Dr. Sandip Patel. He is the most cutting-edge oncologist that I know about for my situation, and I have direct access to him. That is irreplaceable.   

Wishing you happy holidays, and decisions you can live with.

Love,

Dann

Decision Time for My Treatment

Friends and Family,

If you could get the same life-saving medication without being in a clinical trial, would you quit the trial? That’s what I have to decide.

Two weeks ago, I got some spectacular news. My clinical trial drug, got FDA approved! World, meet Tagrisso, The Drug Formerly Known as AZD9291. For me, getting this news felt like a holiday! Thousands of people will now live longer. I am awestruck! It’s a crapshoot whether I would still be alive today, almost fourteen months later, if I had not gotten into this clinical trial. That makes the lives of those thousands of people much more personal to me. Woohoo!

Now here’s the dilemma: The approval of this drug means I have options. Ashley, the AZD9291 Clinical Trial Coordinator, called me. Since I now have a choice and could get my medication in Portland, she asked me if I planned to remain in the clinical trial. I got the feeling she was expecting me to say, “nice knowing you,” and never look back. But the decision isn’t so easy.

There are good parts and not-so-good about remaining in this clinical trial. On the not-so-good side, there is the time and expense of flying 1,000 miles to San Diego every six weeks. It also means getting CT scans twice as often, which means twice as much radiation, which means increased risk of… getting other cancers! Two medical professionals I asked denied being experts in this area, but estimated that CT scans have 100 to 250 times as much radiation as an X-ray. I don’t even know how to fathom what this means about my risk of getting other cancers.

But there are good parts about remaining in the clinical trial. To begin with, I literally owe my life to this drug, and I believe that gathering more research data is important. Since there are only 411 people in the world who have been in the trial, that’s a small number for research purposes. The irony is hard to beat: By remaining in a study to increase the safety for the people that follow me, I increase my own risk of getting another cancer.

There is also the HOPE factor. People who start this drug need success stories. For example, I started on Tarceva shortly after it was approved. My oncologist told me the stats on how long the drug was usually effective, but he also pointed out that there were people that had been in the clinical trial for many years. That gave me more hope. I told myself that I could be “that guy” who stayed on the drug for years. Now, I could be “that guy” for others that follow me on Tagrisso. But only if I remain in the study.

The other reason to remain in the study is that UCSD has an amazing team of oncologists who specialize in lung cancer, and specifically Dr. Sandip Patel. While many oncologists treat lung cancer, the knowledge of other clinical trials and cutting edge treatments that you get from a specialty team is incredible. By remaining in the clinical trial, I remain in contact with Dr. Patel, who can guide me when I need a new treatment.

So, my friends, what would you do? Are there other factors I haven’t considered?

Love,

Dann

Profiles in Lung Cancer Day 29: Genevieve de Renne

"Never underestimate the power of love, and the power of your own thoughts."

Genevieve displaying a small sample of her healing art

Genevieve displaying a small sample of her healing art

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show the many faces of lung cancer, one for each day of the month. Today we highlight a caregiver. In a completely scientific and unbiased selection process, I chose my wife Genevieve de Renne to interview.

Genevieve’s role as a caregiver have been broad-reaching. Her efforts have ranged from the completely practical, such as her pit bull diplomacy with my oncologist, to creating several series of artwork that rotate in our home which are designed to “give subtle healing messages.” She employs countless methods that are more esoteric in order to influence the healing process, but in the end, I translate all of them to mean that she is sending me her love.

Here is my interview with her:   

How long have you been a caregiver? “If you are just talking about being a lung cancer caregiver, it has been a little more than nine years since you were diagnosed the first time. If you define being a caregiver as being there for someone unconditionally, it started when I was a single mom, and then when I was a caregiver for my parents in their later years.”

What was it like in the beginning? “I was in an emotional haze. It’s gut-wrenching to see your loved one go through something like this, and to know that there’s nothing you can do. I had no control, and it was challenging for me. I wasn’t prepared for how quickly I could go to straight to fear.”

What do you wish you would have known at the beginning that you know now? “I wish I would have known that a diagnosis is not a prognosis. I would want to know that we make adjustments, and that life continues. It just takes a different course. I would want to know how important it is to stay in the present, and not let my fears take over.”

What has been the hardest part? “My fear of losing you. For example, if your cough doesn’t sound right, or it sounds like you are breathing harder. It brings up my fears of loss and abandonment. If you have old issues, cancer will bring them right back to the surface. I have to stop every time I have a negative thought, and consciously change it.”

What has been the most rewarding part? “Watching you grow into your gifts. Seeing you develop your interest in writing, and sharing it with others. Watching you let people see the light inside of you.”

What advice would you give to other caregivers? “First, you are a witness to the process... you can’t fix it for your loved one. We can only do what is within our control.

Next, be prepared to be really flexible. There is no clear path, so you have to make it up as you go along. You just have to have faith that the next section of road will appear when you need it.

Finally, remember that you are a part of this journey. Embrace the changes within yourself as you go through this. Emotional things are going to come up, and you need to be present every step of the way. You are becoming a stronger, better person because of what you are going through.”

What do you think would be the most surprising thing for survivors to know about what it’s like to be a caregiver? “Caregivers feel helpless many times. The journey is a physical one if you have cancer, and an emotional one if you are the caregiver.”

How has being a caregiver changed you? “Totally! I think being there unconditionally for somebody… not the Hallmark card version, but really knowing it in my bones, has been the most rewarding part. Knowing the deeper parts of loving somebody and being loved, and feeling that on a cellular level.”  

What is something that people wouldn’t know about you? “I think that, because I’m quiet, people don’t know how much inner strength I have. I rely heavily on my inner strengths, my resilience, my problem solving, my flexibility, and my creativity.”

What gives you hope? “Your passion for life! Also, that we just learned that there’s another treatment step that will soon be available for you. In the big picture, people are surviving longer, and speaking out more. I love that there are people who are passionate about research who are making a difference!”

What resources have been most useful in helping you through the challenges? “Having support people that consistently give me a bigger perspective. For me, that has been my twin sister, and a good friend.”

Last parting words? "Never underestimate the power of love, and the power of your own thoughts. You have to love every cell in your body and send them positive thoughts. This applies to caregivers as well as survivors."

Click here to see yesterday’s story about Dr. Alice Shaw, written by blogger Linnea Olson.

Click here to see tomorrow’s story about Jamie Schull, written by blogger Kim Wieneke.

For a link to every profile written in Lung Cancer Awareness Month, click here.

Profiles in Lung Cancer Day 18 - Gail Lemaire

Gail Lemaire: "I have 30% lung capacity and I'm still laughing my head off!"

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show the many faces of lung cancer, one for each day of the month.

Today, meet Gail Lemaire, who has been beating lung cancer for 23 years. Now THAT brings hope to the rest of us!

Gail, what is your connection with lung cancer? “I am a survivor of lung cancer five separate times over the past 23 years. I have also had breast cancer twice, and thyroid cancer twice.” Gail is also an advocate for others with lung cancer.

Why do you think you’re still alive???!!! “First, I have the most unbelievable husband in the world. He is there for me every minute of every day. It seems doubtful that I could have made it through all of these difficult illnesses - cancer, surgery, treatments, and thousands of tests, etc., without his love and support. Next, I believe in the power of positive thinking. I want to LIVE my life, because I am the luckiest, most blessed, happiest, most contented woman you could ever meet! I’m thankful for every minute of every day that I’m alive. Also, God keeps me here for some purpose, and I’m still trying to figure out what that is. I hope I'm doing it. Of course, good treatment and good doctors are a very important part as well.”

Volunteer work? "I helped form a lung cancer support group at my hospital in 2010, which I still coordinate and co-lead.  I’m also an American Cancer Society Reach to Recovery (breast cancer one-to-one support) volunteer through my breast cancer doctor’s office. For the past 15 years, I have recorded a Sunday news radio broadcast for a Blind and Learning Disabled audience. Sadly, that agency has now closed. I also do other occasional activities, like volunteering at LUNGevity’s annual "Breathe Deep" fun Walk/Run."

Why all these different volunteer activities? “These Volunteer positions are the most rewarding work I could ever imagine.  Certainly, I feel better and get more out of working with other cancer survivors than any help or assistance that I could possibly provide to them.”

What does a typical day look like for you? “I am lucky enough to wake up each morning to my darling husband giving me a cup of coffee in bed!!!  I admit it, I'm spoiled!  I go to the hospital quite a bit for tests and treatments.  I meet up with other cancer survivors - and also do the "ladies who lunch" thing. I stay busy with my Bunko group , my book club,  my breakfast club, and my fine dining group. I also spend time with the LUNGevity group online, as well as a few others.  There are so many places online to share information about our health and wellness.” 

 What is something that people may not know about you? "I have 30% lung capacity and I’m still talking my head off!!!  I haven’t run any marathons, though. My husband and I are captive slaves to our 10lb. rescue/adopted dog, who has us perfectly trained to her liking."

What do you want people to know about lung cancer?   "If I tell someone I have Lung Cancer and they ask me "did you smoke or do you smoke?" it is very hurtful, and it infuriates me. It is an insult to imply if you were a smoker you brought on Lung Cancer yourself.” Also, in the immortal words of Sir Winston Churchill, "Never, never, never give up!"

What brings you hope?  "A doctor told me that we have learned more about Lung Cancer in the past 5 years than we have in the past 50 years.  That's hopeful!"

For yesterday’s profile of Kim Ringen, see http://lil-lytnin.blogspot.com/.

For tomorrow’s profile of Anne Gallagher, see http://aquariusvscancer.com/.

For a link to all of the November profiles, seehttp://lcsmchat.com/profiles-in-lung-cancer/.

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.    

Profiles in Lung Cancer Day 5: Lysa Buonanno

In honor of Lung Cancer Awareness Month, a group of lung cancer bloggers have gotten together to show you the many faces of lung cancer.

Today's lung cancer survivor and spectacular advocate is Lysa Buonnano, who impresses me more each time I talk with her!

Twitter handle: @thelysabee

Blog: https://lysabuonanno.wordpress.com/

How are you connected with lung cancer? “I was diagnosed with Stage IV lung cancer four years ago. I have been through chemo, radiation, four surgeries, and now targeted drug therapy (my miracle pills).

How do you spend your time? “I have done eight advocacy trips in the past four or five months, such as testifying on Capitol Hill to increase funding for cancer research, and doing other public speaking. I'm also a Lifeline mentor with Lungevity, and I'm a peer reviewer for the Department of Defense's Lung Cancer Research Project. I do something to support people that I know with lung cancer at least once a week, such as researching treatment options, and helping someone in my support group get insurance benefits for treatment. When I’m not doing advocacy, I spend a lot of time with my daughter and my family.”

How did you first get involved with advocacy? “I connected with my local chapter of the American Lung Association, and I have become their spokesperson for television and other media. That led to getting paired up with the national office of the American Lung Association. They fly me to D.C. a couple of times a year to meet with congress.

Why are you an advocate? “This is my way of giving back, and contributing to other people. I want to give other survivors hope that their life can still carry on.”

What does a typical day look like for you? “I get up and turn on my tablet to check emails, and then I do an internet search. I have Google Alert set up for key word searches: ‘Lung Cancer,’ ‘Medical Research,’ and ‘ROS1 (my genetic mutation).’ After that I try to have time for coffee on my patio. I enjoy looking at my waterfall.”

What gives you hope?  Research, and other survivors. To know ten-year survivors and to learn about all the new clinical trials makes me think I'm going to be around for a while!

What is something that people may not know about you? “I’m teaching myself to paint. I’m not great, but it’s therapeutic.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

“I made these for my kids. My daughter is a big Marilyn Monroe fan, and my son plays the guitar.”

Do you have a guiding mantra you live by? “Every day is a gift… even on my not so great days.”

What else do you want people to know? “Anybody with lungs can get lung cancer. It doesn’t discriminate.”

To see yesterday's profile, go to http://bit.ly/1PnCeYI.

To see tomorrow's profile, go to http://bit.ly/1Wx8sXo.

To see the profiles for the entire month, you will find a link at http://lcsmchat.com/profiles-in-lung-cancer/.

Profiles in Lung Cancer

November is Lung Cancer Awareness Month! Our group of lung cancer bloggers have gotten together to show you the many faces of lung cancer. Each day we will feature a different person on a different blog site. There are survivors, advocates, health care providers, and caregivers.

Tori Tomalia kicked off by profiling Melissa Crouse, a lung cancer patient and advocate. See the November 1st installation of our blog chain at http://bit.ly/1GWkIcB.

Today, Janet Freeman-Daily profiled Deana Hendrickson, former caregiver for her mother, and now long-time lung cancer advocate. Find out about Deana at http://bit.ly/1SkiGob.

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

 

 

 

 

Connect With Others Who Have Lung Cancer

Come to the LVNG With lung cancer event in San Diego this Saturday, October 24th from 9 AM to 3:15 PM. It’s a chance for you and your loved one to connect with other people living with lung cancer. This interactive community event will offer emotional connections, insights, and shared experiences from people living with lung cancer. On a more intimate level, smaller discussion groups will talk about the specific needs of both people living with cancer and loved ones. To register, visit www.lvng.org/events.

200,000 Reasons to Brag

Friends and Family,

Bragging is extremely uncomfortable for me, but I’m going to do it anyway. I have a purpose in mind. More on that in a minute.

Here’s my brag: When we moved my office to the top floor of our building almost five years ago, one of the guys started the Flight Club. It was a way to keep us motivated to walk up the seven flights of stairs to our office. He set up an Excel spread sheet that we could all access and use to track our steps. It kept a running count of the steps.

I’ve been climbing these stairs on average about twice a day. This week I just reached a personal landmark: I have now climbed more than 200,000 stairs. I reached this 200,000 step milestone despite having a second lung surgery, hernia surgery, radiation, chemo, back and hip pain that temporarily put me in a wheelchair, and month-long colds. I have also been working out at the gym 4-5 times a week during this entire time, because I believe that exercise is one of the reasons that I am still alive.

So here’s why I’m bragging: I want to motivate you. Whether you have cancer, other health problems, or even if you’re perfectly healthy, exercise matters. If I can do this when I am missing one lobe of my lungs, and have cancer in the rest of those lobes, maybe you can do some exercise for your health, too.

How many times have you heard on the news about research that shows that diet and exercise lead to better health?    

I’ve been in book stores and libraries, and I’ve done my own personal survey of how many cancer books are about diet, and how many are about exercise. Here is what I found:

  • There are approximately 1,562,435 books on diet and cancer.

  • There are approximately zero (0) books on exercise and cancer.

Okay, I didn’t count the books. And unlike my steps, the number may be a bit exaggerated. Still. The point is valid. Lots of cookbooks, no exercise books. I’m guessing it’s because people find it easier to change what they eat than it is to exercise. Why not do both?

I found this even looking around my own house. We have three cancer cookbooks, no cancer exercise books.

I’m not alone in my thinking. For years the American Cancer society has recommended exercise to help with the emotional and physical side effects of treatment. Now they are even beginning to see that it impacts treatment itself. Exercise impacts tumors. See this article on their website: http://bit.ly/1STmPDj.

I hope this blog entry has done the job. Are you feeling motivated yet?

Love,

Dann