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Stage 4 Rare & Complex Lung Cancer

Posts: 1
Joined: Apr 2020

Dear Respected Oncologists, Cancer Researchers, Medical & Healthcare Professionals and Fellow Lung Cancer Patients,


I write to you seeking your expertise and knowledge on my mother’s case as it is getting complicated by each passing day. I’ll try to keep the write-up as brief and crisp as possible so it does not take up much of your time.


Jan 2019 - Diagnosed with Non-small Cell Lung Cancer (NSCLC) Stage 4 Adenocarcinoma, with brain metastasis (single lesion). She was positive of EGFR and PDL-1.


Feb 2019 - Stereotactic Radiosurgery (SRS) of the brain done to burn the lesion in the brain. Started her on Tagrisso Osimertinib (80mg) targeted therapy drug.


April 2019 - The scans showed improvement in the main tumor and reduction in sizes in brain and other areas.


August 2019 - Scans showed further improvement. Symptomatically, the cough had significantly reduced in the last few months. In between, the SGOT and SGPT levels were continuously rising and had reached over 500 at their peak. Osimertinib dose was modified to half during the period to test its effect until the levels were back to normal. The same worked and once the levels were back in range, Osimertinib dose was back to 80mg daily.


November 2019 - PET scan showed increase in size of the main tumor and higher uptake. Other lesions had almost been resolved. MRI was almost completely clear.


December 2019 - Stereotactic body radiotherapy (SBRT) was done on the main lung mass, surrounding lymph nodes and supraclavicular area over a period of 10 cycles. Biopsy of the lung mass was taken. The result showed an unexpected transformation from Carcinoma to Squamus cells. No EGFR mutation was seen. Decided to stop Osimertinib tablet before the radiation. Did not restart the same after radiation was over.


January 2020 - Blood profiling / testing for mutation was done to check for EGFR again, which also came negative. PDL-1 was tested which came positive 85%-90%.


February 2020 - Started with 4 cycles of chemotherapy (each broken into 2 parts, so 8 weeks) Gemcitabine 1200mg + Carboplatin 170mg along with 4 cycles of immunotherapy (done every 3 weeks along with the chemo) - Keytruda Pembrolizumab 200mg.


14th April 2020 - PET scan showed significant reduction in main tumor around the lung and resolution in other areas but showed some uptake in brain. MRI confirmed multiple new small lesions in the brain, with the largest of them being of size 0.7cm. Blood sample was collected for gene testing to again check mutation for EGFR and other genes.


22nd April 2020 - The radiation oncologist decided to immediately start Whole Brain Radiation with Hippocampal Sparing starting from 22nd April (10 cycles). This is presently going on and will get done on 6th May.


29th April 2020 - The gene report showed negative / no mutations or fusions for all these genes - EGFR, BRAF, MET, ERBR2 / Her2, ALK, ROS1, RET, NTRK1/3 and KRAS. It showed 0% mutation load and 02 CTCs / ml Circulating Tumor Cells (CTCs).




Currently, once the radiation is over, the only treatment that would continue is Keytruda (Pembrolizumab) which would be infused every 3 weeks. I am yet to hear back from our consulting medical and radiation oncologist on the path forward. Within a period of 15 months, multiple unexpected and rare transformations have happened in her body which differ from the theoretical line of treatment in oncology. The treatment has been going on in Mumbai, India.


She had pericardial effusion last year but that has been resolved in the recent reports. Some pleural effusion showed up recently which had been extracted (around 250ml) and came negative of malignancy. In terms of symptoms, there are only some that occur around the duration of these treatments such as mild cough, weakness, slight loss of appetite and minor body aches. She has had hyperthyroidism over the last 8-9 years for which she has been taking meds daily. This had recently increased after the chemo and immuno infusions and is currently being monitored. In terms of the diet, she majorly (except during chemotherapy) follows a vegan diet with least-to-almost no intake of processed sugar and dairy products.


While our consulting oncologists continue to do the best they can in their knowledge and expertise, I’d like to know from you highly experienced professionals if the current regiment is correct or do we need to add or make any sort of modifications. Have there been other such rare and complicated cases like hers in the world? Any kind of relevant information would be highly useful to her case.

Please feel free to ask for any further detailed information or reports and I can attach or e-mail the respective documents. Looking forward to getting some positive insights in this case. Thanks in advance. Please tag me by my name ‘Praneet’ in the forum or email me on - tulshyan.praneet@gmail.com so I can get notified and respond promptly, as time is very much of the essence here.

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