Stable

July 1, 2020

Cancer Terminology

Progression –  Means the cancer is spreading. This can be in the same area(s) seen at diagnosis or spread to other areas; i.e., organs, bones, brain, etc.

Remission – can be partial or complete. The cancer is shrinking.

Stable – the cancer hasn’t grown or shrunk, the disease in effect, has not changed.

NED – No Evidence of Disease. Can be short-lived or long-lived. If you remain NED for 5 years, you’re considered cured.

Mixed Response –  Some tumors have responded to treatment and others have not.  This can mean many things and is complex when it comes to treatment choices. 

The consensus from my latest scan is my disease is stable with one caveat, the two nodules my docs targeted for measurements each show a slight decrease in size.  While we were hoping for significant improvement I’ll happily take stable. Now what? Eight more weeks of treatment with tumor markers* checked in mid July and another followup CT scan in mid August. As long as I don’t have any new or worsening symptoms before then, and if markers and scans either remain stable or show improvement, I stay on trial unless side effects dictate otherwise.

That’s the down and dirty.  Going in for treatment every week does get old.  It’s a seven hour day between labs, EKG, care team appointment, pre-meds, infusion, followup vitals and another EKG. Side effects haven’t been too bad.  The initial rash, dry skin, fatigue, abdominal discomfort and diarrhea have improved and in the grand scheme of things, this is doable. 

In keeping with our new world of constant updates, UCHealth docs believe that what is driving my cancer is an EGFR ERBB4 fusion not a mutation. From a novel perspective, this EGFR ERBB4 fusion is a 10 on the 0-10 scale for novel. What this also means is that we have no roadmap.  I’m “Patient Zero”, either outstandingly unique or extremely unlucky. I’m going with outstandingly unique, mainly because I’m more of a glass-half-full type and extremely unlucky is just too negative and doesn’t fit with my “what you focus on expands” way of thinking. My daughter probably summed it up best; “Well Mom, conformity really isn’t your thing.” Not to fear, this could also suggest that new/old targeted treatments are back on the table and believe me, it’s good to still have options.

In other news, recently I joined with seven other Colorado lung cancer survivors and patient advocates sharing our stories, educating and pressing our elected officials to reinstate federal funds for lung cancer research at the 2008 level of $20 million dollars.  Currently, lung cancer is funded at $14 million, far-far too low for the cancer with the highest mortality rate in the world and $6 million less than was allocated in 2008. GO2 Foundation coordinated meetings with the offices of our US House Representatives and Senators with over 200 lung cancer survivors and advocates participating.  It was a memorable experience and I was glad to do my part.

Last week was also Turquoise Takeover sponsored by The American Lung Association – LUNG FORCE.  Myself and five other Colorado survivors shared stories and experiences which you can find on the American Lung Association Colorado FaceBook Page.

Also last week, Foundation Medicine re-mixed a previously recorded video with members of the Patient Community Council to celebrate Survivor Week. The link at the bottom of the page will take you to my Twitter feed if you would like to watch the video.

And lastly, July 19 will be four years to the day that I discovered I had something growing in my right lung.  Four years is significant in the stage four lung cancer world. Four years ago, we were talking about some day being able to treat lung cancer like a chronic disease instead of a terminal one. Today, we can say that within the last two years, more treatments have been approved by the FDA for the treatment of lung cancer than had been approved in the previous ten years! Yes, we are getting closer and we still have a long way to go.

The last four years have also revealed to me in ways previously unfathomable that resiliency, the ability to bend without breaking, holds within it’s sway a universe of boundless potential. I visualize my roots seeking the deep rich earth, creating the stability needed to counterbalance my ever swaying world above ground. My limbs are supple, my trunk is strong. My family, friends, medicine and magic have seen me through the past four years and I am resiliently stable, how about that for a dichotomy! I am also…eternally grateful.

Telling Stories

We all have our stories. Our stories after all make up the tapestry of our lives. Several months ago, I was approached by Health Monitor Network wanting to feature my lung cancer story in their ‘Advanced Lung Cancer’ edition. A ninety minute phone interview followed by a 4 hour photo shoot and this is the final product. Jim and Tess handled their roles beautifully with Tess stealing the show showing off for the camera with a smile on her face and a dance in her step. She continues to amaze us with her resiliency.

I am honored and grateful that Health Monitor Network chose to share our stories, may they reach far and wide. Lung cancer remains the #1 cancer killer in the US, more than colon, breast and prostate cancers combined. Yet the dollars spent is drastically, unfathomably disproportionate in federal spending to other cancers. These statistics are beyond unacceptable and the only way the statistics will change is if our stories are told and action is taken. Share our stories. Change the statistics.

We ALL have lungs.