This is the record of all of my medical treatments. Having learned a lot from the experiences of other patients, I am sharing this in the hopes that someone facing similar illness finds it useful.
This represents only my experience, not medical advice. Cancer is a disease unique to each individual. Therapies that have worked for me may not work in other situations, and vice versa.
First symptoms. Lower back pain. Atypical low energy.
Diagnostic workup of chest mass reveals 7 brain tumors. Diagnosed with stage 4 metastatic adenocarcinoma of the lung. Metastasis to both lungs, much of the spine (C4, T5, L1, L3,L5), multiple metastasis in the pelvis, sternum.
April 01, 2015
Craniotomy #1. 4cm tumor resected from right frontal lobe.
April 10, 2015
Palliative radiation to the spine T11-L4.
April 16, 2015
Craniotomy #2. 3.5cm tumor resected from the right parietal lobe. Learn about positive testing for EGFR exon 19 deletion.
April 23, 2015
Start Tarceva (erlotinib).
Start zoledronic acid. First scans following treatment shows “dramatic response to treatment”.
Disease progression - multiple small nodules throughout both lungs. New treatment plan at MGH to resect nodules and create a cell line.
December 23, 2015
Video Assisted Thoracic Surgery (VATS) wedge resection in right lung. Continue Tarceva.
December 31, 2015
Guardant360 cell free DNA test shows exon 19 deletion, T790M an important mutation for getting the next EGFR TKI (osimertinib).
Mass General tissue sequencing is negative for T790M mutation in disagreement with cfDNA results. Immunohistochemistry staining reveals up to 60% PD-L1 staining.
Switch from zoledronic acid to denosumab.
Start Opdivo (nivolumab). Continue Tarceva (erlotinib).
In first scan on Opdivo, disease in lungs look much worse. Cough is much worse. Stop Opdivo, Tarceva. Start Tagrisso (osimertinib), no break between doses.
May 25, 2016
Guardant cfDNA shows all mutant DNA is undetectable.
Scans show resolution of many nodules. Continuing bone pain. I push for local therapy of residual disease based on RCT from Gomez et al.
Stereotactic radiation of residual tumor in left lung. 36Gy in 6 fractions.
Stereotactic radiation of T5 and L5.
Added Avastin. Continue Tagrisso.
January 07, 2016
Propose to Amy and she accepts. Wedding date 05/06/2017.
Guardant cfDNA EGFR del19 spikes from 0.3% to 8.5%. Reveals a C797S resistance mutation. PET scan shows metabolic disease in pelvis and L3. Stop Avastin. Continue Tagrisso.
May 6, 2017
Wedding day :)
Stereotactic radiation to L3 and pelvic tumor Guardant cfDNA EGFR del19 drops from 8.5% to 0.06%. C797S,T790M is undetectable.
Disease progression – many new small nodules in both lungs.
Add Tarceva. Continue Tagrisso.
Tagrisso, Tarceva combination results in slow progression. Lung tissue biopsy reveals del19, T790M, C797S mutations.
Clinical trial - necitumumab, Tagrisso (osimertinib). Terrible skin toxicity.
Continuous disease progression on trial therapy. Exit clinical trial. Continue Tagrisso
Travel to NIH in Bethesda, MD for clinical trial options. Am offered Dr Rosenberg’s famous TIL trial. Undergo second VATS to harvest tumor with TILs, and leukapheresis to harvest while blood cells. TILs will take many months to grow out so I will need to go on other therapy in the meantime.
Start cisplatin, (Alimta) pemetrexed, Tagrisso. I become neutropenic (0.54 K/ml) after first infusion.
Have a second infusion with cisplatin(dose reduced), Alimta, Avastin. Scan shows 90% response. Stop the cisplatin at this point as I have achieved a great response already and the platinum drug toxicity. Later platinum sensitivity might be useful due to RB1,TP53 and susceptibility to small cell transformation. Continue Alimta, Avastin, Tagrisso.
NIH was not able to find tumor specific TILs from my white cells. I am out of the NIH TIL trial.
Stop Avastin due to frequent nose bleeds. Disease progression, but still low disease burden. Continue Alimta, Tagrisso.
Hospitalized with pneumonia.
Accepted into clinical trial for JNJ-372 after a long process to confirm C797S via tissue biopsy. Infusion related allergic reaction on 1st infusion, expected by the trial.
Severe skin reactions to trial drug. Worsening cough leads to earlier scan. Scan shows 20% disease progression. Stop trial due to toxicity and disease progression.
CEA is stable during this month with only Tagrisso. Treatment effect of lingering antibodies from the trial?
Start 2nd line chemotherapy Carboplatin (80% dose), Taxol, Avastin, Tagrisso.
Another great response to chemotherapy. Approx 85% reduction in disease
Stop carboplatin after 3 cycles, due to low grade neuropathy. Continue Taxol, Avastin, Tagrisso
Drop Avastin due to nose bleeds. Continue Taxol, Tagrisso.
September 19, 2019
Our daughter, Mia, is born.
Disease starts to progress again, but low disease burden. CEA nadir at 14.6. Continue Taxol, Tagrisso.
Follow up MRI reveals six brain metastasis, leptomeningeal disease. Start 160mg Tagrisso. Restart Avastin. Continue Taxol. I am a five year survivor. Global COVID-19 pandemic sweeps the US. As I receive immunosuppressive chemotherapy, it’s a coin flip if I could survive a COVID-19 infection. I enter lockdown at home.
Stereotactic radiation to largest brain metastasis Continue Taxol, Avastin, Tagrisso.
Stereotactic radiation to remaining five brain metastasis. Continue Taxol, Avastin, Tagrisso.
CEA has slowly risen to 74. Have now had 24 cycles of Taxol, Avastin, Tagrisso. Symptoms from disease, and cumulative toxicity from chemotherapy are getting significant.