Join Me for a Podcast

Friends and Family,

I had the honor of being interviewed for Lung Cancer Canada’s annual Evening of Hope. The full-length version of that video was turned into a podcast, which I think turned out well.  

Ottawa Hospital oncologist Dr. Paul Wheatley-Price interviewed me about the evolution of lung cancer treatment over the past seventeen years, maintaining hope through treatment failures, the difference between surviving and thriving, challenges for caregivers, and other topics. The interview is heartfelt, vulnerable, and optimistic. Most people who read my blog should find this worth the listen.  

You can access the interview wherever you get your podcasts (Google Podcasts, Apple Podcasts, Spotify, etc.). Just search for “Lung Cancer Voices” and then select A Special Interview with Dann Wonser (2023 Evening of Hope) dated November 14th. While you’re there, check out their other podcasts. Or if you prefer, just follow this link:   https://open.spotify.com/episode/0coPRmXI8hKnwpM6OJoR0J.

I’d love to hear what you think of it.

Love,

Dann

Get a FREE Copy of My Book on August 1st

Friends and Family,

To celebrate World Lung Cancer Day I’m giving away FREE copies of my book, SECOND WIND: THRIVING WITH CANCER on Tuesday, August 1st. In the book, I share my experiences learning to not only live with lung cancer, but to thrive with it.

This offer is open to everyone. I ask a small favor in return. If you could take a minute to rate the book on Amazon after reading it, and better yet, write a review, it will make it easier for other people to find it. If you already have a copy, that review would still be helpful!

Seventeen Candles

Something big has happened, so big that my post is longer than usual today. Read a couple more paragraphs and you’ll see why.

Once upon a time, I had a sore back that wouldn’t go away. After weeks of no improvement, my chiropractor sent me for an X-ray. It didn’t show what caused the soreness, but it did show a spot on my lungs. That spot that turned out to be lung cancer.

That was exactly seventeen years ago. Today is my cancerversary!

The cancer was already Stage III, and the prognosis was not good. With advanced cancer and limited treatment options available in 2006, I was expected to die within months.

I had chemo, a lobectomy, and then more chemo. The “chemo sandwich” approach was revolutionary at the time, and it worked. I had no evidence of disease for another four and a half years. Genevieve and I were almost convinced that I had beat it.

But then countless spots showed up on a CT scan of my lungs. The general oncologist (whom I naïvely accepted as a replacement when my lung cancer specialist left town) didn’t think it was lung cancer. We waited four more months for another scan before he recommended a biopsy, a wait I never would accept now. By that time, the spots had grown – and multiplied.

The same surgeon who did my lobectomy performed the biopsy, using the same VATS (laparoscopic) procedure. (Needle biopsies were not an option back in the dark ages.) He called me a couple weeks later and bluntly told me I had Stage IV lung cancer.  He also told me not to rearrange my vacation plans to start chemo, because “quality of life is the most important thing right now.” That’s when I knew I was going to die. I couldn’t help but start imagining my own funeral 

This was the second time my flame almost went out.

With Genevieve’s help, I found a new oncologist in a different hospital system who specialized in lung cancer. He asked if I would agree to be tested for the 49 lung cancer mutations known at that time for research purposes only, since there were only treatments for two of them, and I had already tested negative for both. I agreed, then started chemo along with Avastin, which prevents the cancer’s blood vessels from growing, which prevents the cancer from growing. That bought me another eighteen months before the cancer progressed and spread to my hips. The new testing showed I did have the EGFR mutation, which we only learned by switching doctors and hospitals. I started treatment on Tarceva, the first-generation EGFR inhibitor that had just come out. But the pain in my hips was so severe that I had to use a wheelchair, so I had radiation. It killed the pain, and life was rosy again.

By the time the cancer started growing again, my lung cancer specialist had moved away, and I was assigned to a general oncologist. Apparently I hadn’t learned my lesson yet, because this doctor’s lack of knowledge almost killed me as well. He had no treatment suggestions other than more chemo and perhaps some radiation, but he looked defeated. Good thing I had learned about a clinical trial for a second-generation EGFR targeted therapy from a friend. I also learned that the trial was closing very soon. I had until the end of the day to get my records faxed (this was 2011) from two hospitals and two clinics. Keep in mind that medical records departments considered two weeks a rush! I pestered them several times each, and called every nurse and doctor I knew at those locations to beg them to apply pressure for me. At 5:30 that evening, I got in.

I got in for the first appointment, that is. I still needed to have the T790M mutation, which was a coin toss. I won that coin toss and got it into the trial for Tagrisso, a drug that works without progression for an average of thirteen months. I was on it six and a half years without progression.

When it grew again I found myself another clinical trial, this time for BLU-945. Unfortunately, by the time I got in, the cancer had gone wild. It progressed to my brain, my liver, and then my spine. The pain was severe and uncontrolled, which led to Walgreens treating me like a drug addict. Fluid filled my lungs and I had to sleep in a chair for four months because I couldn’t breathe lying down. I flamed out of the trial in weeks. The timing was bad; I was in the early part of the dose-escalation phase and was given one-tenth of what turned out to be the therapeutic dose.

I was back to using a wheelchair, this time because I couldn’t breathe enough to walk around the hospital. I fired my general oncologist and switched to a lung cancer specialist. At my first appointment she referred me for radiation to two-thirds of my spine, arranged to have the fluid in my lungs drained, referred me to palliative care, and put me on oxygen. My pain was under control within a day of seeing the palliative care doc. I was scheduled to start chemo, but my platelet count was too low so they sent me home for a week. When I returned, my platelet count was even lower. My oncologist offered me the choice between no treatment except end-of-life care, and “threading the needle,” as she called it. That meant having a reduced dose of chemo and hoping it didn’t kill me. I had the chemo (of course!) and within a week I started feeling a little better. I had PleurX drains implanted in both lungs, and Genevieve drained the fluid for me every other day for months. I remained on chemo plus Tagrisso for another year and a half.

Threading this big needle looks way easier!

When that stopped working, my oncologist immediately put my name on a waiting list for a local clinical trial and called her oncologist buddies in the top clinics in the West to find other options. I researched trials on my own through www.clinicaltrials.gov and checked my Facebook lung cancer groups for other ideas. Dr. Sanborn and I pooled our ideas and discussed options. I was within days of scheduling an appointment in Denver to get tested for mutations to qualify me for four different trials when a spot opened in the local trial. Good thing, too. After that I went to Denver as a backup, and I didn’t meet the criteria for any of the four trials. If I had started in Denver, I would have had cancer progression for five or six weeks before learning I would need to start over in another trial. The cancer might have progressed too much for me to qualify for another trial by then. 

I’ve now been in the amivantamab trial (no other drug with it) for over five months without progression, and I’m feeling great. I’m doing daily yoga, four hours a day of yardwork on a steep slope, golfing, and walking for an hour a day up and down steep hills. Feeling good!

There has been a tremendous amount of dumb luck involved in staying alive for seventeen years when the prognosis at the time was months. There’s also been a lot of self-advocacy and Genevieve’s advocacy on my behalf that isn’t listed here. Attitude plays a huge part, and so does being proactive and having excellent lung cancer specialists at the right times. But even more, the love and support of family and friends like you have been tremendously helpful. Most important, and the main reason I am still alive, is the love and support of Genevieve, the love of my life.

As if a picture could do her justice!

I’ve never written a summary of my cancer journey like this before. It feels dry since I haven’t written about the joy that has come along the way. But it would take a book to write about all of the things that have made life so amazing over all these years. Speaking of…

I will be giving away FREE COPIES OF MY BOOK Second Wind: Thriving With Cancer on August 1st, which is World Lung Cancer Awareness Day. In it, I share not only what has kept me alive, but what has helped me thrive with lung cancer.  I’ll post a link a few days in advance.

Thank you for being part of the most extraordinary journey I could have hoped for.

Love,

Dann

Getting Something Off My Chest

Friends and Family,

There’s something I’ve been wanting to get off my chest for a long time, but first things first. I had a CT scan last week, and we met with my oncologist last Wednesday. I will start out by telling you that for us right now, one of the most beautiful words in the English language is “stable.”

Not this kind of stable!

Stable! Those are the results of my latest scan. As in, the massive improvement in my scans from six weeks ago is holding steady. And that’s not the only good sign. My lab work is moving more and more into the normal range. Dr. Sanborn told us she panicked a little when she read in my chart that I had put on weight in the last three weeks, thinking that it was probably fluid building up in my legs again. That’s why she questioned me so carefully about how I was feeling and was extra thorough checking my legs – to make sure. But the weight gain was real, another sign that I’m getting healthier. Part of that is that I’m also gaining some of my appetite back, but beyond that, having a body that reacts normally to food means that my force-feeding program of the last three months is paying off.

 Fattening up (it’s all relative!) is paying other dividends. I’m feeling the cold less. Instead of dreading the frozen moments between getting into the shower and putting my clothes back on again, I’m comfortable with the temperature. I’ve actually worn only two layers of clothing around the house a few times. I think some of it is the added padding, and some of it is my body getting back to normal self-regulation of temperature.

 All of this means that I continue with chemo every three weeks starting last Wednesday, but now the only chemo drug is Alimta. I’m done with my four rounds of carboplatin, and moving on to what I think of in comparison as “chemo lite.” Side effects have been minimal, and I’m already on the road to recovery for this round. Nice and easy!

 And now for what I wanted to get off my chest. It’s not that heavy, but it does have an oversized impact on daily living.

 It’s called PleurX. I’ve had two PleurX tubes draining fluid from my lungs for three months. One of the tubes dried up completely (no more cancer in the interstitial lining of my lung), so we had an appointment today to remove it. Dr. Mary suggested that since the other tube was nearly dry, there was less risk of infection if she removed that tube as well. The rest of the fluid will re-absorb on its own, she said.

 And so I agreed. Both tubes were plucked from my chest today, while Genevieve turned her head to avoid the sight. I’m a free man again! No more pain at night when and my tubes and fat-free ribs collide with what felt like a rock-hard pillow top mattress. No more restricted movement to prevent accidentally pulling out the tubes or tearing off the bandages. No more awkward improvised showers where Genevieve wrapping me in Glad Wrap to keep water away from my bandages.

 The sweet smell of freedom!

 It’s been a long time since I’ve been able to be this naturally upbeat. Three months ago, Genevieve had to wheel me around the hospital because I couldn’t breathe enough to do it on my own. We were having end-of-life discussions with Dr. Sanborn, as in this-chemo-could-kill-you-or-make-you-better, and defining where my bottom line was before I would want my life to be over. For me, it was constantly gasping for air, and I was very close. It brings me to tears to think how close that moment was.

 We are so far from this now that it seems surreal. My strength is coming back, and our daily hour-long hill walks are just as challenging now as they were before my decline last summer. Life is almost as normal as it gets again.

 I am grateful for the encouragement that all of you have given me. Some of it has been practical, such as the wonderful meals. Much of it has been verbal, and based on your own experiences. All of it I treasure deeply. Of course, I owe every breath I take to Genevieve, the greatest gift of my lifetime.

 Here’s hoping you find many things for which you, too, are grateful.

 Love,

 Dann

Things are Looking Up

Friends and Family,

Breathing and pain management have gotten better since I last wrote, so now I can come up for air and write with a little more hope. Feels good just using the “H” word again.

Dr. Sanborn hooked me up with a pain management specialist, and she is brilliant. Within twelve hours my pain was quite manageable, and she had plans to make it even better. She also had advice for managing chemo better, and is hooking us up with a neurosurgeon to consider using a nerve block in my spine rather than heavy drugs if radiation doesn’t cure the back pain. I have never had palliative care before, but now I’m an instant believer.

I had radiation last week as well, but it wasn’t what we expected based on my other experiences. This was done in a single, high-dose zapping rather than the more-standard ten sessions over two weeks. I suspect my oncologist had a hand in this, since she didn’t want me to start chemo until a week after radiation, and she didn’t want to delay chemo for two weeks. Either way, I’m happy it’s done. I should start feeling the pain relief within days… or weeks…   

I knew there was fluid on my lungs making it hard to breathe, but I had no idea how much fluid until it was drained. Genevieve chased down every provider who had ever even seen my name in print until she was able to get these appointments authorized and scheduled. Since I was getting desperate for air, I have never been happier to see her go all ferocious on these unsuspecting victims until she got action. Things didn’t change much after the fluid was drained from my right lung on Friday, but when they drained the second (left) lobe yesterday, it made a huge difference. Now I see why I couldn’t breathe. Between the two lungs, they drained 2.3 liters of this gunk off my lungs:

More than two full gunk containers! That’s over five pounds of fluid. No wonder I was having trouble breathing. I was drowning!

The next step will be to start chemo (carboplatin + Alimpta) on Friday. I’ll stay on the Tagrisso along with the chemo, and have sessions every three weeks. Unless…

My liver was biopsied on Friday when the fluid was drained from my lung, and the results of that biopsy could change everything. Dr. Sanborn is concerned that the cancer may have converted to small cell lung cancer (SCLC), which is much more aggressive and has far fewer treatment alternatives than the non-small cell lung cancer (NSCLC) I have had until now. I’m not going to look at lab results in MyChart. I’ll just wait until I hear from Dr. Sanborn, who is out of town this week, or my chemo type and schedule is changed, which would tell me everything I didn’t want to hear.

In the meantime, please think non-small cell, or pray for non-small cell, or meditate repeating non-small cell...  

Your thoughts, prayers and meditations are much appreciated.

Love,

Dann

The Party's Over

Friends and Family,

We knew it wouldn’t last forever, but we got a really good run out of it, didn’t we? I have been incredibly fortunate to be on Tagrisso for six years and nine months with no growth until recently.

We just got the latest CT scan results and learned that the cancer has grown a tiny bit again (1mm, the thickness of a credit card) in one of the spots in my lungs, a change so small that many oncologists consider that within the margin of error. Except this time lymph nodes near my abdomen and clavicle grew ten times that much, and the cancer in the rib in my back is now involving surrounding soft tissue and more of the bone. In short, it’s time to do something. It may be that I stay on the Tagrisso, since it still seems to be doing a lot of good, and add a second med.

The next step is to get a biopsy of the lymph nodes to see how the cancer has mutated, because if the cancer is growing again, there’s a new mutation. They will have me lie down in a CT scan machine, insert a needle, scan me again, adjust the needle and push it in a little more, then rinse and repeat until they hit the target and get the sample. I’m told I won’t even need sedation for this one, so it’s a pretty minor procedure.

I’ve also asked for a liquid biopsy, which is when they take a blood sample and look for the cancer’s DNA circulating in the bloodstream. That way we will know if there is any new mutation elsewhere that isn’t showing up in the lymph nodes. We want no surprises!

We’re hoping to get this done next week. It will take 2-3 more weeks to get the results. At that point we will see what approved medications or clinical trials are promising for my mutation(s). Meanwhile, one oncologist is urging me to get radiation treatment for the cancerous rib, while the other is suggesting I wait until I can’t manage the pain with Tylenol. The hope is that in time, the new medication will attack the cancer in my rib. Since I’ve been golfing and doing some pretty physical yardwork with no significant pain, I’m going to avoid radiation as long as possible.

Genevieve and I have made one other decision. We’re going to take it one step at a time, and not worry about what might or might not work until we get to that point. No need to worry about the future until we get there, is there?  

Love,

Dann

Free Book

Friends and Family,

My contribution to Lung Cancer Awareness Month is to give away FREE COPIES of my book Second Wind: Thriving With Cancer. The giveaway runs through Friday.

Front Cover Final for Amazon_2.jpg

This book is for anyone living with cancer, either directly or through a loved one. It is full of hope, inspiration, and coping strategies for the extraordinary issues of survival and day-to-day living that are unique to people living with a life-threatening illness. It is based on my own experiences since I was first diagnosed in 2006.

Here is the link: https://amzn.to/36MhtEC

Love,

Dann

From Fear Factor to the Heimlich Maneuver to My 13th Cancerversary, this Trip Had Everything

Friends and Family,

If you want to add more drama to your life, you just can’t beat lung cancer. It makes the old Disneyland Tower of Terror ride seem more like riding the teacups in comparison.

Teacups2.jpg

First, there was the new  cough. It started two months ago. Genevieve and I had endless discussions about it. Was it getting worse? Better? Is there something else it could be? When you are healthy, a cough like that might be annoying, but you do your best to ignore it and wait for it to go away. When you have cancer, a headache two days in a row makes you wonder if the cancer has spread to your brain. There is no random symptom too small to raise the question: “Does this mean my cancer is growing?”

When that symptom is in the same place as the cancer, well, it’s hard not to go there. As a result, Genevieve and I have been snapping at each other for weeks leading up to this latest CT scan, and our subsequent trip from Portland to San Diego to get the results. I was nearly certain we would find out that my extraordinary ride of four years and nine months without progression, on a drug that normally leads to progression within thirteen months, was over. The Fear Factor had taken over.

Fear Factor.jpg

However.

I have been extraordinarily bad at knowing when my cancer is growing. I had no symptoms before I was diagnosed the first time, when it was Stage III. I had no symptoms five years later when I was diagnosed the second time, when it was Stage IV. The cancer has progressed twice since then, and I didn’t know it was happening either time. To confuse things even more, there have been many times when I thought it had grown, but I was wrong. I like to think I’m a good judge of character, but I have to admit that I’m a horrible judge of the character of my cancer.

This time, we thrilled that my cancer judgement was so bad! We got the results, and there has been no growth again! UN-FREAKING BELIEVABLE!

And to top it off, we just celebrated my thirteenth cancerversary! Not bad for a guy with Stage IV lung cancer, eh?

cancerversary.jpg

We were almost giddy as we sat down for lunch. But right after we started, Genevieve started gagging and choking. We stopped thinking about my survival over the coming months, and started thinking about Genevieve’s survival in the next few minutes. She could breathe just enough to ask me to do the Heimlich maneuver, which I did unsuccessfully. A small crowd gathered, including a man who had just passed his CPR certification. He thumped Genevieve on the back several times, which was also unsuccessful. While this man,  several others and I problem-solved, Genevieve continued to wheeze and gag. We were all terrified.

Heimlich Maneuver.jpg

It became clearer as time went on that, while Genevieve was still gagging, she was able to breathe… just enough. She thought it was a pill lodged in her throat. A good half-hour of continued gagging later, the pill dissolved enough for the episode to mostly pass.

Our celebration flipped on its head and instead reminded us of the fragility of life for everyone. It was also a vivid reminder of how much Genevieve means to me, and how grateful I am to have her. The thought of losing her terrified me, and made my concerns about my own CT scan seem trivial. It’s true what Genevieve tells me: It’s much harder when your partner’s life is at stake.

The end result could not be better. Genevieve is back to breathing normally, and there is still no end in sight to my extraordinary good fortune with my Tagrisso clinical trial. And to top it all off, we BOTH have a greater appreciation for each other.

All in all, that’s a pretty great trip, don’t you think? Now, we have four more months to think about it.

I hope all is well for you, too, my friend.

Love,

Dann

The Next Chapter... And I Can't Wait!

Friends and Family,

I’m so excited I can hardly stand it! My book is soooo close to being released! I’VE BEEN LOOKING FORWARD TO THIS FOR FIVE YEARS!

The last pre-release step is to Beta-test for typos, and this is where YOU can help if you like. If you are interested in getting the book before it is available to the general public, and willing to search the book for typos by March 16th, then you’re in. Just email me at DannThrives@gmail.com, and I’ll send you a digital copy.

I will send you a digital copy of the book. Once I get your feedback and make any necessary adjustments, the book will be released. I’M HOPING TO RELEASE THE BOOK BY APRIL 3RD!

I’m ready to share a few things about the book. The first is the title, which you already know if you looked at the book cover designs on the tab at the top that says “The Book.” The title is Second Wind: Thriving With Cancer.

Thank you all for your votes and comments on which cover design you preferred. Based on your feedback, the cover design is being finalized over the next several days. I’m loving how it is turning out.

And now, I’ll tell you just a little about the content. Even if you have read every single blog entry over the last twelve years, this will be 95% new to you. The first taste is to show you what will be written on the back cover:

_____________

This is one of the most thoughtful and useful books I've read, and certainly a must-read for anyone in the health professions. Beyond that, it is an amazing book for any of us trying to live consciously on this planet… I loved reading this!!! I laughed out loud several times! 

~ Dawn Doutrich, Ph.D., RN, CNS Emeritus, Washington State University College of Nursing

 

Second Wind is emotionally gripping. There is a rare intimacy as Dann leads readers through his journey. The book is hard to put down. As a survivor I found myself saying, “I felt that too!”

~ Charlotte de Renne, Breast Cancer Survivor

 

Dann's heartfelt, sincere account of his cancer journey touched me deeply. His work is inspirational and positive! I’m buying one copy for me, one for a friend that was newly diagnosed with stage IV cancer, and one for my oncologist.

~ Ginny Hicks, Stage IV Lung Cancer Survivor and Advocate

 

"Don't you ever get tired of being so positive?" my niece blurted out one day.

The question shocked me, five years into my fight with lung cancer.  Was my enthusiasm about my remaining treatment options so disheartening that even someone as upbeat as Stephanie struggled to see the hope in my situation? Was the way I was thinking that foreign to how other people think?

Over the next year, I came to understand that having cancer had changed more than my body. It had changed how I think. I had grown.  Not in spite of cancer, but because of it. Now I treasure every new part of this adventure, as I have learned to not only survive with lung cancer, but to thrive with it.

 

About The Author

Dann Wonser is a twelve-year, Stage IV lung cancer survivor that is still in active treatment. He is a public speaker, member of national and local committees on lung cancer, and lobbies both state and federal congress for lung cancer issues.

Cancer taught Dann lessons he never comprehended in the twenty-five years that he worked in mental health. Now, his priorities and his focus are clear. He is happily married to an extraordinary woman, and his quality of life has never been better.

 

100% of the profits from this book will be donated to lung cancer organizations.