My name is Ashton, and I’m Grace’s husband. I’m going to be writing most of the posts in this blog, which both Grace and I hope will serve as a meeting point for information and updates for family and friends. We were recently married 6/9/2017 and are completing medical residency training in Anesthesiology (Grace) and General Surgery (me).
During our last vacation to Illinois in June, Grace developed a typical cold with cough, sore throat and congestion. The congestion and sore throat resolved, but the cough persisted. She took a short course of antibiotics with no improvement and ultimately went to and urgent care for basic labs and a chest x-ray. The labs were unremarkable and the chest x-ray was very non-specific and showed a haziness in the left lower lobe lung field. Grace then went to see the pulmonologist to rule out anything serious. At that appointment, the chest xray was looked at more closely with UCI radiology and suggested left lower lobe collapse. Given her age and lack of risk factors, a mucous plug or some inflammatory process seemed most likely. She was given a course of steroids and Advair with the plan to follow up closely in two weeks and obtain additional imaging if symptoms did not improve. Shortly after starting the prednisone and Advair, we noticed Grace began speaking with a lisp. Additionally, we noticed an unintentional weight loss from her baseline of 115 down to 108, and she was experiencing fatigue and progressive shortness of breath. She used to be able to run stairs, but was now getting winded just going to the second floor of the hospital where she worked every day.
Less than a week after the initial pulmonology appointment, we called the office and followed up with a CT chest earlier than planned. This was the first time we were truly concerned. The CT chest demonstrated complete left lower lobe collapse with mediastinal, hilar, and supraclavicular lymphadenopathy (swelling of multiple lymph nodes in the chest). We were still hopeful that this was something benign, that the lymph nodes were just reactive, but the fear became more intense. The following day, Friday 8/17/18, Grace underwent bronchoscopy with endobronchial ultrasound and fine needle aspiration biopsy. After the procedure, our fears were confirmed.
Grace had cancer. Preliminary pathology suggested non-small cell lung cancer. Our emotions ran wild and I couldn’t fathom how this could possibly happen to our Grace. That weekend was a very emotional time for us. We had abundant support from both of our families and friends.
The following Tuesday 8/21/18, Grace underwent brain MRI and PET scan for cancer staging. Luckily the brain MRI was negative for brain metastasis, but the PET demonstrated both axial and appendicular metastases (multiple bones of thorax, pelvis, and occiput). Though she did not have neurologic sequelae, PET scan suggested thoracic spine involvement, and T-spine MRI was obtained, which demonstrated epidural involvement without evidence of cord compression. On Wednesday 8/22/18 Grace met with UCI Oncology to develop a plan. We discussed her pathology results in which the cytology from the FNA yielded poorly differentiated non-small cell carcinoma with squamous differentiation. The oncologists were very skeptical of this diagnosis, as her demographic (young, non-smoker, Asian woman) is most likely to have adenocarcinoma.
The following day, we visited City of Hope and were seen by Oncology, Radiation Oncology, ENT, and Thoracic Surgery. The gist of these consults was—yes, the squamous component of the diagnosis was skeptical, we should start chemotherapy regardless, radiation therapy should wait, the tumor was not ENT origin, and we should obtain additional tissue biopsy prior to starting chemotherapy. The following day, City of Hope Thoracic Surgery performed a supraclavicular excisional lymph node biopsy for additional tissue for pathology diagnostics.
On Monday, 8/27/18, Grace began chemotherapy and immunotherapy with carboplatin, paclitaxel, and pembrolizumab. The preliminary plan was to undergo 4 cycles of this, spaced 3 weeks apart, with the possibility for modifying this regimen based upon additional studies. One thing I did not mention earlier is that we also sent for molecular studies and immunohistochemistry. The purpose of the molecular studies is to find specific mutations in her cancer that can be targeted with immunotherapy drugs (such as pembrolizumab, amongst others), which could be adjusted to find a drug that addresses her specific mutation. At the time of this writing, these studies are still pending. However, the immunohistochemistry was performed to assess whether Grace had a completely different diagnosis known as NUT midline carcinoma.
On Friday 8/31/18 we were notified that the immunohistochemistry results came back positive for NUT midline carcinoma, which is an extremely rare cancer that is more aggressive than non-small cell lung cancer. There exists no standard of care for this disease process, but there have been a number of advancements in recent years, particularly with drugs known as BET inhibitors. We will be meeting with our oncologists this week to discuss the treatment plan moving forward, and the plan regarding the initiation of BET inhibitors.
We know that there are dismal survival statistics percolating the literature for this kind of cancer, which some academics could say to take with a grain of salt because the research is lagging behind the explosion of new treatments in the past couple years. But what we know is this: Grace is not a statistic. She is a child of God. Grace will survive this. God has a plan for her to use her as His powerful tool, ALIVE. This happened according to His plan, and we cannot question why it happened, but rather need to maintain faith and hope that His plan will pan out to become so much more than what we can imagine now. Please keep Grace in your prayers. She is the strongest, most determined person I know, and she will survive this through God.
“Suffering produces perseverance;
and character, hope.
And hope does not disappoint us.”