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.

End of the Year Recap 2018

Nov. 30, 2018

Since returning home in January after my stroke, I work on cognitive thinking and memory therapies every day.  I continued to make improvements throughout the year.

Being off of work and at home, we decided it was a good time to get a dog.   We rescued an 8 week old black lab mix girl named Laynie on May 1. She keeps me on my toes and keeps me on a schedule.  Both are good for my stroke recovery.

Adoption day for Laynie May.

When she first got to our house it was almost like both of us were learning and resting at the same level and at the same pace.  We would go for a walk and both run out of energy and slow down at the same time.  We would get home and both of us would nap.  We gradually increased our exercise time and kept on napping when needed.

The summer was filled with long walks in the neighborhood with Laynie.  While I was preparing for this year's Run the Rocks, she was a growing dog and needed to work off that extra puppy energy.

I completed the Run the Rocks 5k on October 21.  I shared my story of being diagnosed with stage iv lung cancer and how much the Run the Rocks 5k means to me.  It's a yearly milestone to celebrate living another year with terminal lung cancer.  This year was even more special after surviving the stroke and walking without using a cane for balance 

Run the Rocks is the most physically challenging 5k I've ever done.  I was determined to complete the 5k this year.  It was my 4th time participating in this event.  Out of all 4 years,  this year,  by far,  was the hardest to complete.  Of everything involved with my Medical Apocalypse, I think it was just athe combination of lung cancer, moyamoya and recovering from the stroke that made it so difficult this year.  

Lisa Moran speaking at Run the Rocks

Run the Rocks finish line.

The Pikes Peak Browns Backers hosted a Whiteout Game for Lung Cancer Awareness at the beginning of November for Lung Cancer Awareness Month.  It was a great event with many club members participating and wearing white.  I shared my lung cancer story at this event as well. 

Pikes Peak Browns Backers Support Lung Cancer Awareness

I ended the fall with a trip to Mayo Clinic in AZ.  I never got my 6 month Moyamoya bypass surgery follow up scheduled with Stanford University Hospital.  That's a whole other blog post in itself.  I was concerned about disease progression and wanted to verify the bypass was holding up. 

My first trip to Mayo was a series of meetings, tests and scans.  I met with my new neurosurgeon.  We discussed what led to my initial Moyamoya diagnosis,  my current symptoms and the tests that would follow that appointment.

I'm not hearing often.  If I am occupied by watching a show or reading a news story  I just don't hear when Jeremy speaks to me.  I had a hearing test to verify if it's my ears not hearing or if it's my brain.   Good news, my brain is hearing and processing well.  Bad news,  I'm just hard of hearing.  (Thanks Tesla.)

I have been experiencing numbness in my right leg and foot.  That side was not effected by the stroke.  I had MRIs and MRAs of my head,  neck and spine to rule ot any neurological causes.  

Good news, I have not had any new strokes!  I have good blood flow from the direct right carotid artery bypass.  The left side looks still looks good.

The areas of numbness may have to do with my spine.  L5  is where the lung cancer tumor was and where I had radiation.  Because it is not brain related,  it may be spinal damage from the radiation or possibly cancer activity.  They couldn't rule cancer in or out by an MRI.  I have a CT scan and lab work in a couple weeks.  If my lung cancer biomarker numbers are elevated,  I'll get a PET scan from there. 

I was the 2nd participant in a Whole Exome Seqencing research study on Moyamoya Disease at Mayo Clinic.  They are testing Moyamoya patients to see if there is a common denominator.  They are also researching to see if there are  specific gene mutations that cause Moyamoya.  Im anxious to find out if I have a known Moyamoya gene mutation.  We already know I have two gene mutations driving my lung cancer.

2019 is just around the corner.  I can't wait to see what the new year brings my way.   I know one new endeavor is in the works.  I've been considering this for some time; I'm going to start writing articles for lungcancer.net.  I will continue to write for this blog and I will share my lungcancer.net articles here.  Im excited to get started.   You will know here as soon as my first article is published.