I'm NED! Now what?

This week I received the greatest news a stage iv lung cancer survivor could ever be given.  I'm now considered NED, No Evidence of Disease.  I believed in small miracles.  I now believe in great big, fantabulous, miracles.

But what does that mean?
It means that a little coughing fit from a tickle in my throat yesterday wasn't immediately followed by that little voice in the back of my mind. "Was that a lung cancer cough? Why am I coughing? Oh no, did my tumors and nodules return?"  It's the same voice I hear after any twitch, ache, or pain in my back or legs.

But what does it really mean?
It means that all the tiny stars, nodules and tumors that were in my lungs and spine are not visible in my latest PET scan.  They are gone.  If you can't see them, there's no evidence of disease.

Am I cancer free?
Unfortunately, NO.  I'm No Evidence of Disease. Currently there is NO CURE FOR LUNG CANCER.   Until then, I will always have microscopic cancer cells, not visible on a scan, in my body.

If I'm NED, can I stop my treatment now?
Unfortunately, no.  It was my chemo pill that helped shrink the tumors and nodules down to nothing.  I will continue to take some type of targeted treatment for the rest of my life.  The approach now is more like treating a chronic illness similar to diabetes or high blood pressure.  The chemo pill will keep the lung cancer at bay.

I will continue taking my current treatment as long as it works.  Studies show it's effective for an average of 12-18 months. There is already an FDA approved drug that I can start to take if that time comes.  I've heard survivor stories of being on my current treatment for several years.


Scanxiety, Shock and Cebration

I had my 3 month follow up pet scan yesterday. I didn't have much scanxiety, anxiety about the results of the scan.  I had been feeling good and almost pain free for two full months. That's until this last Sunday when I started having horrible back pain.  I was so worried the pet scan was going to show progression in my spinal tumor since I was having 10-11 levels of pain on a scale from 1-10.
Lisa before her appointment
April 27, 2016

Well, I found out I'm NED!!!!!!  No evidence of disease!!!!!!  All the tumors and nodules in my lungs and spine are GONE!!!! And it's either a pulled or strained muscle in my back near the location of my spinal radiation.  I've never been so excited about back pain before.

It's surreal.  I was in shock.  My cheeks hurt last night from smiling so much yesterday. It's been a day since finding out and I don't think it's totally sunk in yet.

Lisa celebrating the wonderful news
I'm so very thankful for the prayers, love and support I've received from around the world.  I seriously believe that the prayer requests and positive energy that surrounds me are the reasons I'm considered NED within 9 months of my initial diagnosis. Truly amazing!!!!!!


~ Lisa's Lung Cancer Story ~

In August of 2015, at the age of 44, I went from having a very active, healthy, life with a persistent cough and a little shortness of breath, to finding out I have stage iv non small cell lung cancer. At the time of my diagnosis my lung cancer had already spread throughout both my lungs and to my spine.
Lisa climbing the Manitou Incline
~June 2015
How could this be?  I had no pain. I was a city letter carrier on walking routes. I would go to runner's club once a week, after a full day of work. Just weeks before my diagnosis I climbed the Manitou incline and ran down the Barr Trail, for the first time. The incline has more steps than the Empire State Building.
My incline experience was a major red flag. When people asked about it, I would say it was easy, but couldn't breathe or I couldn't catch my breath. I heard myself say that over and over. A friend asked me to do it again and go with her for her first time. I said yes at first. But backed out. I needed to find out what my breathing problems were before doing the incline again. I didn't want her first incline experience to be a helicopter rescue for me.
I had to find a primary care physician. I explained my intermittent breathing problems. I told him I had gone to 2 urgent care type facilities 2 times in the last 6 months thinking I had bronchitis and being told my lungs sounded clear. He ordered an xray that day.
I'll let you know that up until this point I had avoided anything and everything medical. I still have my tonsils. I have my wisdom teeth. I never had a baby because it involves medical procedures.  With that being said, within 9 weeks I had:
  • Xray
  • CT scan
  • Scope biopsy
  • PET scan
  • Blood draws
  • MRI
  • Surgical biopsy
  • Appointments between appointments
  • Received my full diagnosis
It was almost like new information and results were coming in every two weeks.
  • I have a tumor? Ok, I can deal with that.
  • It's cancer? Ok, I can deal with that.
  • It's stage iv? WTF!!!!????!!!!
My lung cancer has no cure. Surgery is not an option. My cancer can be managed. Early on I asked a doctor how long can it be managed for. He said they can't give a time frame because of so many different drugs, new treatments and clinical trials. 

I was curious  and researched some information on my own.  The statistics I found were old,  but said I had a 3 to5% chance of surviving for one year.  I beat those odds!

 I joke that I got into lung cancer on the ground floor. 6 lung cancer drugs were FDA approved in 2015. 5 of those were after my diagnosis. That gave me hope.

I started my treatments with an oncologist and radiologist in the UC Health Network at Memorial Hospital Cancer Center in Colorado Springs. After experiencing uncommon treatment side effects I switched my oncologist to Dr. Ross Camidge at UC Denver at the Anschutz Cancer Center.

I had 10 radiation treatments to shrink the largest tumor in my upper right lobe. My cough and shortness of breath disappeared. I started my targeted therapy. Because my cancer is caused by the EGFR gene mutation, my chemo is targeted treatment in a pill that I take once a day.
My first follow up PET scan showed the large lung tumor had disappeared. All the tiny starlike nodules throughout both my lungs were gone too. Since then I had a one time, high dose, radiation treatment to the spinal tumor to help reduce some new pain it was causing.
Lisa with other lung cancer survivors at
the World Conference on Lung Cancer ~September 2015
After the initial diagnosis set in I experienced every emotion you can imagine.  I'm happy to be alive and for the support from my family and friends.  I have fear of the unknown. How long will my current treatment work?  I got hope after meeting several stage iv lung cancer survivors at the World Conference on Lung Cancer, which just so happened to be in Denver in Septemer 2015, just weeks after my diagnosis.  I was angry about my late diagnosis, the public stigma about lung cancer and the lack of research funds.
That anger took me to the internet. I found blogs, videos and twitter accounts from lung cancer patient advocates and the organizations they are involved with. I found the American Lung Association and Lung Force.
Lisa in her Team PLH hoodie
~September 2015
I created Team Peace Lungs & HappinessTM along with two of my oldest and dearest friends. I started this blog to post my own lung cancer info, treatment updates and personal accomplishments, along with my Facebook and Twitter posts.  Team PLH participates in fundraising and advocacy events.  The team comes together to spread lung cancer awareness and raise funds for much needed research to improve my quality of life and eventually fund a cure for lung cancer. 

Adjusting to lower energy levels was more of a mental than physical challenge. There were some days with pain and discomfort. I still went to work. Life hsd to go on. But instead of just living life day to day, I now appreciating every moment of it. I jumped at the chance for any and all experiences. My new motto: No missed opportunities.

As of June 11, 2018, my lung cancer found a way to resist my targeted therapy treatment.  I started a new targeted therapy drug,  Osemertinib (Tagrisso) on May 1, 2018.  I should have results of my latest ct scan in a few days. 

With good doctors, the latest treatments and my positive attitude, I continue to live an active, otherwise healthy as possible life... with lung cancer.

Viva Las Vegas ~April 2016