The Short Version
May 29, 2013: Diagnosed stage 3A adenocarcinoma. No ALK or EGFR mutation.
July 1, 2013: Restaged to 4 with multiple lung nodules and metastases to bones, plus one to liver.
July 8, 2013: Began 6 cycles of chemo with carboplatin/alimta/avastin. Scan after cycle 2 showed major shrinkage of main tumor, and sclerotic bone mets. Scan after cycle 4 showed continued shrinkage as well as a clear head CT. Next scan planned for November 8th, to be followed by long-term chemo maintenance.
October 31, 2013: ROS1 rearrangement discovered, so the plan is changing. I will be starting Xalkori (crizotinib) instead of chemo maintenance.
November 8, 2013: Scan shows cancer is stable.
November 9, 2013: Began taking Xalkori.
January 31, 2014: Scan shows improvement. Liver is clear, lung primary is 16 mm.
March 14, 2014: Brain MRI is clear.
August 12, 2014: Brain MRI is clear, but there may be something suspicious on the kidneys.
August 20, 2014: Declared NED. Still going strong on Xalkori.
November 18, 2014: Scans are still looking good, one year on Xalkori.
September 29, 2015: Routine MRI reveals a 9 mm brain metastasis in the cerebellum, and two tiny lesions suspicious for metastases.
October 26, 2015: Stereotactic radiosurgery (SRS) for the largest brain met. Doctors are still uncertain what the two tiny spots are, and plan to watch the one in the left frontal lobe. The other tiny spot is adjacent to the main met in the cerebellum, so they treat it at the same time as the main met. Follow up MRI planned for January 2016.
May 6, 2016: SRS for another brain met, this time with the frameless Edge technology.
July 22, 2016: Two new, tiny (1-2 mm) spots appear on a follow up MRI. They are too small to treat just yet, so we will watch and wait.
February 27, 2017: Possible slight progression on the two spots. We decide to proceed with more SRS.
December 2017: New spots in the brain prompt up to take the leap into a clinical trial that offers ROS1 coverage in the brain.
October 4, 2018: We move ahead with brain surgery to resect the mass in my cerebellum.
November 6, 2018: I started on the Expanded Access Trial of Lorlatinib.
November 2018: 5 days of targeted radiation for my cerebellum, to kill any remaining cancer.
February 14, 2019: I take my first dose of TPX-0005, a clinical trial TKI for ROS1.
April 8, 2019: My first scans on TPX indicate that it is working.
May 17, 2019: A small bone met appears in my left scapula, and we treat with 3 days of targeted radiation. I remain on the trial.
September 24, 2019: A routine chest CT reveals a small pleural effusion.
October 10, 2019: Thoracentesis procedure, where they drain 240 ml, which turn out to be malignant. I am thrilled to send some off to the ROS1der project to grow cell lines. I remain in the TPX trial.
The Longer Version
I had recurrent chest colds and a lingering cough for months. In April and May of 2013 things seemed to get worse, and I visited my PCP for what I thought was a recurrence of my childhood asthma. I tried several asthma drugs throughout May, but my breathing progressively got worse. Finally in late May, my PCP realized that there was something more going on and sent me for a chest CT. They discovered a large mass and sent me for a biopsy which revealed adenocarcinoma in the left hilum with some lymph node involvement, stage 3A. The plan was to do radiation with concurrent chemo (etoposide and cisplatin). The PET scan and brain scan revealed no other involvement, and I tested negative for ALK and EGFR mutations.
Because of my childhood history of cancer, the doctors were concerned that this second cancer may be part of an underlying condition and sent me through genetic testing. The results revealed no such condition.
All of this took several weeks. In the mean time, a study came up involving using higher dose radiation given for a shorter period of time. I agreed to enroll in the trial, but it involved redoing my PET scan. To everyone's shock, it came back showing metastases in my spine (C7, T2, L4), two on the left illiac bone, one on the 7th/8th rib, and one on the dome of the liver, as well as nodules throughout my lungs. I was now stage 4. The treatment plan changed radically. No radiation, no surgery, but instead chemo with carboplatin/avastin/alimta.
Your story sounds sooo much like mine. I was diagnosed with stage 4 BAC with EGFR mutation on June 28, 2013 after months of a nagging cough. It took a visit to the emergency room for my diagnosis. Hoping your treatment is going well.
ReplyDeleteTammy, it is crazy how often lung cancer is misdiagnosed, sometimes for a year or more. I'm so glad you tested positive for the EGFR mutation, and I hope the meds are working for you! Best wishes.
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