A Lung Cancer Diagnosis

November 2018: I have posted about my different diagnoses throughout this blog. It's been a while since I've posted about being diagnosed with lung cancer.

It all started three years ago in August 2015.  I was in the first years of a serious relationship with my boyfriend, Jeremy.  We were passed that milestone moment when you realize your significant other is your forever person.  We were planning our future together and talking about getting married.

It was also the beginning of my career as a letter carrier.  By choice, I was on walking routes. I was walking approximately 35-40 miles a week.  I would walk anywhere from 6 to 12+ miles a day. Carrying mail was more than a job. It was my career and my passion.

I would run at least one 5k (3.1 miles) a week after work with my runner's club.  I was enjoying running for the first time in my life. There were times I'd run two or three 5k's in a week.  Running wasn't just the annual 5k for charity any more.

As active and healthy as I was, I had a persistent cough and some random breathing issues.  There were a few times between late 2014 and July 2015 that I felt a heaviness in my chest, something similar to bronchitis. Each time there seemed to be an acceptable explanation (post nasal drip, virus) to justify the breathing problems.   It didn't seem too serious at the time.

When breathing issues interfered with exercising and running, I decided to get things checked out. I went to  a doctor for my breathing problems.  I had a chest x-ray. The result...a mass in my right lung.  Further testing revealed a devastating diagnosis.

We heard the words, “inoperable”, “incurable”, “terminal”.  What seemed to be minor turned out to be inoperable, incurable, stage iv lung cancer.  It was late stage, stage 4, non small cell lung cancer. At the time of diagnosis, lung cancer had already spread throughout both lungs and to my spine.  

I asked:

• How long to I have to live?
• How did I get lung cancer?
• What do I do now?

Statistics said I had a 3 to 5% chance of living one year.  Lung cancer in young healthy adults, especially women, was on the rise.  My lung cancer is caused by the EGFR gene mutation. It’s not genetic or something I inherited from my parents. It’s genomic, something in my DNA has changed and mutated.

The mutation meant I would have targeted therapy treatment instead of iv chemo.

Days before we heard, “incurable” and “terminal”.  Now we heard something promising. I had a chance at living a normal life.  It’s almost like, “normal life” echoed as it came out of my nurse navigator’s mouth.

Over the years my treatments have been targeted therapies and radiation treatments to my lung and spine.  I take a chemo pill once a day that targets the mutation that is driving my cancer.

I was able to stay at work and continued living my active otherwise healthy life. Things were as normal as they could be with quarterly PET scans thrown in to monitor disease progression. Or in my case, we watched tumors and nodules shrink and disappear. the targeted therapy did it's job. I was No Evidence of Disease within 8 months.

Our moment of relief lasted 6 months. Then the nodules and tumors returned in my lungs. We monitored that growth for 10 months. In the mean time I had a bronchoscopy biopsy to test for a new mutation. I switched targeted therapies because I tested positive for the t790m mutation.

Life is back to normal, for now. Well, as normal as it can be with quarterly scans and blood labs thrown in to monitor for disease progression.

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You Take the Good with the Better Than Bad

I had a pet scan and an appointment with my oncologist this week. The pet scan showed what appears to be more evidence of progression at my primary lung tumor spot in my upper right lobe. We've been monitoring this since October 2016.

Lisa Moran, April 19, 2017

The next steps will be two biopsies. Blood work has already been sent to Guardant for a liquid biopsy. Hopefully, something will show up on this test. It's my second Guardant biopsy. The first didn't show anything, not even my EGFR gene mutation. I will also do a needle tissue biopsy.

With the biopsies, we are looking for any newly acquired lung cancer mutations and we need to confirm it is lung cancer progression instead of delayed radiation scarring. If it's cancer, I will be adding radiation to my treatment plan.

The scarring is a possibility. But my blood work numbers have continued to increase, a sign of progression. Plus, my radiation oncologist office called to schedule my radiation consultation. If you ask me, that's kind of putting the cart before the horse to schedule a treatment consult before my biopsy.

My oncologist said this is a good report. My targeted therapy, chemo pill, is still working throughout my body. There are no new nodules or tumors. There is only this one location of possible progression. Radiation treatments should take care of it.

Several people have referred to this as a bump in the road. It feels more like a detour. Either way, I'll be able to get back on track.

What can make a setback appointment a little more acceptable? A visit to an art exhibit to see paintings and drawings from Monet, Renoir, Picasso, Degas, Matisse and others. Masterworks is currently on display, for free, on campus at my cancer center. I'm thankful for the opportunity to see these works of art in person.

One other good thing happened at my appointment. I was presented an opportunity to participate in a clinical research trial. I submitted blood samples to help research and improve the future of liquid biopsies. Hopefully, one day, because of my participation in this trial, invasive, surgical biopsies could be a thing of the past.

Here's to the First Day of the Rest of My Life

It's so hard, mentally, to switch my targeted therapy, chemo pill.  I know the first pill is what helped shrink my tumors and nodules to nothing.  But physically, I have been uncomfortable and in pain.  Physically, that old pill can go away and never return.

Leave it to me to be the only person on record to have the muscle aches, tightness, fatigue and pains that have occurred as a side effect of Tarceva.

This is my current alternative.  Iressa. My new pills arrived last night.  It came with this file box with a very inspirational quote and a pretty decent looking cancer cookbook.

My oncologist described the change like going from Pepsi to Coke.  It's more than likely if I don't have GI issues with Tarceva, I may not with Iressa.  I took my first dose before bed. Let's just say, I'm noticing a slight side effect this morning.  But I would think that's expected anyway when switching meds. All in all, so far, so good.

On the plus side(s), I can take it with or without food.  No more waiting 2+ hours after eating to take my pill.  I don't have to to avoid the sun, which has been a challenge with an outdoor job. No more staying covered and out of the sun. I'm going to give it a couple days to get the Tarceva out of my system.  But I can't wait to be outside in shorts and short sleeves again.

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.