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Mar 4, 2019 Latest post:
May 29, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. This site is primarily managed by Anita's daughters, Lindsay and Julia.
Mom was diagnosed with stage 4 non small cell lung adenocarcinoma (NSCLC/lung cancer) on June 28th, 2018. At the time of diagnosis, she had been experiencing pain in her right side and a feeling like she couldn't take a deep breath. It was a shocking diagnosis for our entire family and the community surrounding her as she had never been a smoker.
We had our first visit with Mom's oncology team at the University of Chicago on July 5th, 2018. She is seeing Dr. Jyoti Patel, a leading researcher and provider in lung cancer. At her first visit, we learned she has a somatic (not hereditary, did not inherit or pass on) mutation in one of her genes that caused the lung cancer. Her specific mutation is on her epithelial growth factor receptor gene (known as an EGFR mutation, she has an exon 19 deletion).
Mom was started on a medication called osimertinib (tagrisso), which is targeted therapy and is effective in people with lung cancer caused by an EGFR mutation. Mom started on this medication in July and started feeling better right away. The pain in her side decreased significantly and she no longer felt she couldn't take a deep breath. We had a normal summer of days by the pool and trips to Michigan to visit her family. Her first repeat CT scan 6 weeks after starting the medication showed a significant reduction in cancer burden.
Mom continued to feel well and at her 3 month check in November, 2018 her CT showed continued regression of the cancer in her right lung and in the lymph node in her chest. We continued to feel blessed and grateful for this medication that was working so well with so few side effects.
Mid to late February, 2019 Mom started to feel pain and that feeling like she couldn't take a deep breath again. She had her scheduled appointment with CT on 2/27/19. Unfortunately, at this visit the CT showed the fluid in her lung had returned, the area of tumor had grown by a few millimeters and the lymph node in her chest had grown to about the size it was in June. The fluid collection in her lung indicates to the doctors that the drug she is on is no longer working. We had hoped she could be on this drug for many years as some people are, but the cancer has likely mutated and is not responding. Dr. Patel said we should consider this a “bump in a long road to come” and that there are other treatment options.
On 2/28/19 Mom had the fluid in her lung drained by a pulmonologist. She had 2L taken out! She lost 4 lbs of fluid weight, they said they didn't know how she was walking around with all that fluid. She's definitely not a whiner! The fluid will be sent for new biopsy to look for the next mutation and guide the next treatment. They also ordered genetic testing from a blood sample, called guardant testing (can help guide treatment).
3/13/19 Still waiting for biopsy results to guide next treatment. Brain MRI was normal and recent genetic testing did not reveal anything new.
Again, thank you for your support during this journey, I will be posting updates here rather than sending out emails in the future.