I have got to be the luckiest guy alive – because I am still alive.
It started when I broke my ribs. That “lucky break” led to an X-Ray, which is how the spot on my lungs was discovered. If I had not gotten tested until I had symptoms, it might well have been too late for me. It was already Stage III, and back in those dark ages of 2006, the only options were chemo, radiation, and surgery.
I was fortunate again, because the combination of chemo/upper left lobectomy/chemo was enough to leave me NED for almost five years.
When I was re-diagnosed in 2011, the cancer was already Stage IV, with thousands of spots everywhere in my lungs. Targeted genetic treatments were available, but I tested negative for the two mutations that were treatable at the time. My surgeon told me to get my affairs in order, and my oncologist admitted that he wasn’t the best person to treat me, because he wasn’t a lung cancer specialist. (WHAT?!!!) I couldn’t even get his clinic to return phone calls, so I went to another oncologist in another system. For the second time in five years, I was planning my own funeral and thinking I had months to live.
While I started chemo, I was re-tested for 34 genetic mutations as part of a research protocol. This time, I tested positive for the EGFR mutation. What are the odds of having a false negative, then of needing to get re-tested for any reason at all?
I finished chemo, and then continued on Avastin until my kidneys protested by spilling protein and skyrocketing my blood pressure. Sometimes Avastin continues to affect cancer cells long after it is out of the body. In my case, this meant that I was on Avastin alone for seven months, and then was on no treatment at all for eleven months after that!
After that, I was on Tarceva for 13 months. Since the cancer had spread to my back and hips, I had radiation to my hips for pain relief. I am grateful that it was effective, since at times I even had to use a wheelchair to get around. After that, I was back to the gym every day.
My next unbelievable good luck was when my oncologist told me that the cancer was progressing again, and that he had nothing to offer me besides spot radiation and chemo. I was better informed than him, so the next day I got myself signed up for the clinical trial for AZD9291 (Tagrisso). I had my first appointment three days before the trial closed to new patients! I wasn’t going to let the fact that the trial was a thousand miles away, in San Diego (I live in Portland), get in the way.
I have now been on Tagrisso for 40 months without progression. I am grateful for every day. My plan is to keep hanging around until the next treatment that I need is available. Until there is a cure, I plan on treating lung cancer as a chronic disease rather than a death sentence.
This cancer has also had a serious impact on my quality of life. It’s better! I have gone from being a closed, guarded, fiercely independent person to one who has learned that we can’t do this alone. I have shared more with friends and family, who have given more than I could have imagined in return. That makes it easier for me to keep opening up. I have becoming more loving. My priorities are more clear, because I know who and what are the important people/things in my life now. As a result, I started sharing my story, first in emails to family and friends, and now on a blog, at www.dannwonser.com. I have taken it one step further by writing a book, sharing my stories of learning how to find the hope, the joy, the meaning in life, and the love that have all come in to much sharper relief in these past twelve years. Here is the link: https://amzn.to/2Hgi0RT
If you had known me before I was first diagnosed, you would know that sharing who I am with complete strangers is even more of a miracle than the fact that I am still alive!
We are on the right track for new treatments, my friends. Let’s do our best to continue to outrun this cancer.
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 in the USA for lung cancer issues. You can read more about Dann’s journey on his website. He lives in Portland, Oregon.