I Raise Funds for ALK+ Lung Cancer Research Because More Research = More Life

It's estimated that over 230,000 people will be diagnosed with lung cancer in the next year. Many people assume that lung cancer is linked to smoking, but 20% of lung cancer patients never smoked. ALK+ Non-Small Cell Lung Cancer is a small subset, 4-5% of all lung cancers. It was identified in 2007, when researchers discovered a rearrangement in the ALK gene that causes this cancer. It often affects people who are young and healthy; 85% are non-smokers. It's often not diagnosed until it has spread to other areas of the body (Stage IV) because there are few symptoms. It has no known cause. In the past 15 years, there have been tremendous strides in the treatment of ALK+ lung cancer. Oral medications called Tyrosine Kinase Inhibitors (TKIs) shrink or eliminate tumors and allow us to lead good lives with manageable side effects. But the TKIs don't kill all cancer cells. Eventually the remaining cells will become resistant to the TKIs. Cancer will return and spread. There is exciting research that may soon make ALK+ lung cancer a chronic or even a curable disease. But research requires money. The ALK Positive organization is a patient-driven group with a medical director and research committee who actively pursue research opportunities. This group is mighty, and since 2017 has raised over 8 million dollars for research. I'm asking for your help in this fundraising effort, especially during Lung Cancer Awareness Month. Through the end of 2024, all money raised is matched by an anonymous donor. Every dollar helps.

Living Life with ALK+ Lung Cancer

4 years!

4 years ago, in October 2020, I was given a diagnosis that would change my life. And in November 2020 I started taking the drug that helps me live it. 

You probably already know my story: never-smoker, healthy (I thought) 62 year old, waking at night with epigastric pain and occasional headaches. We thought it was GERD. My gastroenterologist ordered an ultrasound to look for gallstones. Instead they found masses in my liver. Another week of scans and biopsies confirmed tumors in my liver, adrenal gland, lymph nodes, lung, bones, and brain. The diagnosis: Stage IV Non-Small Cell Lung Cancer. 

I was lucky to have an amazing team at my local Cancer Care Institute. They knew the importance of:

  • identifying the genetic makeup of this cancer, called biomarker or oncogene testing, and
  • waiting to start treatment until we had this vital information.

In the first week of November, my ocologist called me with the "good news" that my cancer is caused by a rearrangement in the ALK gene. It's treatable with a targeted oral medication. Not curable, but treatable, for an unknown period of time. 

So began my journey with targeted therapy. My Tyrosine Kinase Inhibitor (TKI) is called Alectinib. In the first few weeks on Alectinib, my tumors shrank. By 4 months I had a "complete therapeutic response", meaning we can no longer see any tumors on my scans. This response doesn't happen often, so I'm thrilled. But I know individual cancer cells, called persistor cells, still live in my body. Some day these cells will develop resistance to Alectinib, and my tumors will reappear. There is currently one other drug I can try when my cancer progresses. After that, everything is experimental. I've already surpassed the average time patients on Alectinib survive without progression. 

For now, I live in harmony with my cancer. I have manageable side effects. And I've learned that I can't take anything in life for granted. That means doing my best to find beauty around me, spending time with the important people in my life, and visiting some places I've always wanted to see. So far, that's included London; Costa Rica; and a cruise to Spain, Italy, Greece, and Croatia. Not bad! My pup Gracie keeps me active and is a great snuggler when I need it.

I stole a motto from my friend Kirk, an 11-year ALK cancer survivor: Don't Waste Your Cancer. I'm joining this fundraising effort to support research that's so close to finding ways to improve the length and quality of life for everyone with ALK+ Lung Cancer. Thank for you contributing if you are able. Thank you for showing me so much support. Thank you to the fast and ferocious friendships I have made in my ALK+ group. In only 4 years I have known and lost some wonderful friends. I'm better for having known each of them. Thank you to my amazing oncology team who provides state of the art cancer care in rural South Dakota. And thank you to my guardian angel who woke me those nights in 2020 to say "I love you; please get checked".

$1,010.50

achieved

$1,500.00

goal

of your goal reached

Have a website or other link you'd like to share? Place it here!