Terminal Engineering A blog of a cancer fighting engineer

My cancer treatment journey

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.

November 2014

First symptoms. Lower back pain. Atypical low energy.

March 2015

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).

May 2015

Start zoledronic acid. First scans following treatment shows “dramatic response to treatment”.

December 2015

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).

January 2016

Mass General tissue sequencing is negative for T790M mutation in disagreement with cfDNA results. Immunohistochemistry staining reveals up to 60% PD-L1 staining.

February 2016

Switch from zoledronic acid to denosumab.

March 2016

Start Opdivo (nivolumab). Continue Tarceva (erlotinib).

May 2016

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.

July 2016

Scans show resolution of many nodules. Continuing bone pain. I push for local therapy of residual disease based on RCT from Gomez et al.

October 2016

Stereotactic radiation of residual tumor in left lung. 36Gy in 6 fractions.

November 2016

Stereotactic radiation of T5 and L5.

December 2016

Added Avastin. Continue Tagrisso.

January 07, 2016

Propose to Amy and she accepts. Wedding date 05/06/2017.

February 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 :)

May 2017

Stereotactic radiation to L3 and pelvic tumor Guardant cfDNA EGFR del19 drops from 8.5% to 0.06%. C797S,T790M is undetectable.

August 2017

Disease progression – many new small nodules in both lungs.

Sept 2017

Add Tarceva. Continue Tagrisso.

January 2018

Tagrisso, Tarceva combination results in slow progression. Lung tissue biopsy reveals del19, T790M, C797S mutations.

February 2018

Clinical trial - necitumumab, Tagrisso (osimertinib). Terrible skin toxicity.

May 2018

Continuous disease progression on trial therapy. Exit clinical trial. Continue Tagrisso

June 2018

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.

July 2018

Start cisplatin, (Alimta) pemetrexed, Tagrisso. I become neutropenic (0.54 K/ml) after first infusion.

August 2018

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.

October 2018

NIH was not able to find tumor specific TILs from my white cells. I am out of the NIH TIL trial.

November 2018

Stop Avastin due to frequent nose bleeds. Disease progression, but still low disease burden. Continue Alimta, Tagrisso.

December 2018

Hospitalized with pneumonia.

February 2019

Stop Alimta.

March 2019

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.

April 2019

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.

May 2019

CEA is stable during this month with only Tagrisso. Treatment effect of lingering antibodies from the trial?

June 2019

Start 2nd line chemotherapy Carboplatin (80% dose), Taxol, Avastin, Tagrisso.

July 2019

Another great response to chemotherapy. Approx 85% reduction in disease

August 2019

Stop carboplatin after 3 cycles, due to low grade neuropathy. Continue Taxol, Avastin, Tagrisso

September 2019

Drop Avastin due to nose bleeds. Continue Taxol, Tagrisso.

September 19, 2019

Our daughter, Mia, is born.

November 2019

Disease starts to progress again, but low disease burden. CEA nadir at 14.6. Continue Taxol, Tagrisso.

March 2020

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.

April 2020

Stereotactic radiation to largest brain metastasis Continue Taxol, Avastin, Tagrisso.

August 2020

Stereotactic radiation to remaining five brain metastasis. Continue Taxol, Avastin, Tagrisso.

December 2020

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.