Changes Coming This #LCAM

Lisa Moran with Dr. David Carbone
Shirt available at diecancerdie.org
White ribbon info thewhiteribbonproject.org

 November is Lung Cancer Awareness Month.

We have been monitoring lung cancer progression in my lungs for several months.

When I switched my treatment from the Dayton oncologist to Ohio State in August, 2022, my OSU oncologist seemed surprised that I wasn't having breathing issues after seeing the latest scan results. 

At that time, I hadn't noticed a difference. Since then, things have changed. I don't have a wheeze. It's a faint intermittent whine or squeal. I have been losing my breath easier. I'm OK sitting still. But with any walking, exertion, light lifting or even talking I have shortness of breath.

My oncologist and I discussed the latest biopsy and possible next steps in treatment. He was very upfront and frank. I appreciate this in a doctor. I just want the facts, no matter how much I don't want to face the reality. 

The information from the biopsy was good news to hear. We know the cancer is still non-small cell adenocarcinoma. It has not mutated to small cell, a more aggressive form of lung cancer.

 He reviewed the possible next steps for my treatment. Bottom line is, I'm running desperately low on treatment options.

I have to wait another week for complete results from the biopsy.  If a new targetable mutation is found, we will add a targeted therapy to my treatment plan. If not, my PDL-1 (a protien) level is high enough now to get positive results from immunotherapy.

I will likely start pembrolizumab. The brand name is Keytruda. I will have to quit my current targeted therapy, Tagrisso. The two treatments do great alone,  but don't jive well together.

Immunotherapy is an infusion once every 3 weeks. It does have minimal, tolerable and treatable side effects. I will need to decide if I will get a chest port. It makes infusions easier. The last time I did iv infusion treatment,  my veins became very problematic. I got a port. That was great for 14 months. Then the port got infected. Something I'd rather not experience again.

When I was diagnosed in 2015, immunotherapy for EGFR patients like me wasn't even an option. Now it's my best possibility.

There is a clinical trial for a different immunotherapy for EGFR+ lung cancer. Because of my damaged kidneys, I don't qualify for that trial. Although,  my kidneys and creatinine have improved and are the best they have been in two years, it's not

 enough for a clinical trial.

As an outlier and long term stage 4 lung cancer survivor, I've been aware, for years, of the lack of FDA approved treatments after progression on Tagrisso. I've been somewhat mentally preparing for this moment. The truth is, facing my reality and morbility is quite sobering.

 But hey! I'm still in the game. Instead of having three or four treatment options, I have two. I may be running out of treatment options but I will never run out of HOPE.

This Is Me

My Medical Apocalypse has allowed me to connect with many people and communities on many levels.  I've been able to find others with similarities to my own experiences when they share their fights and struggles.

When I find these connections it makes my own fight and struggles a little easier.  Knowing I'm not the only one helps me. Hearing and learning about others surviving stage IV Lung Cancer, recovering from stroke and living with Moyamoya gives me a sense of community,  guidance to face difficult situations and inspiration to carry on.

This Is Me is my latest article for Lungcancer.net.  it touches on how finding people that share their stories can inspire and unite individuals and communities.

Click HERE to read the article.

Hanging in There and My first Published Article

December 19, 2018:
Today's a great day with positives all around.

I received a great report from my oncologist.  My lung cancer is stable and my CEA/biomarker is within normal range and the lowest it's ever been.  My next set of tests will be in three months to monitor for possible cancer progression.  Hopefully there will be no change in the next three months.

My first article was published at Lungcancer.net today.  Click on the link or photo below to read it. 
https://lungcancer.net/living/hanging-in-there/

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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