Alternative and out of country treatments for stage IV NSCLC ALK+ve

agbrockway

In the fall of 2019 my 25 year old daughter stumbled into a Vancouver hospital so short of breath she could barely walk. A week earlier  she had been diagnosed with pneumonia and placed on antibiotics and puffers based on low oxygen readings and an xray that the doctor said was "the most unusual xray he had ever seen." I asked them at that point to check for a blood clot (I'm an ER doc) but they refused saying women her age don't get blood clots(patently untrue) The doctor declined to talk to me. When she went back she was diagnosed with a large pulmonary embolus (blood clot) and a CT chest showed a likely cancer. Several days later and after multiple physicians she was diagnosed with Stage IV NSCLC with mets to bone and brain.  A whirlwind of activity followed as we got her home to Ontario and the team at LHSC diagnosed her with the ALK+ve variant. She started alectinib and had a dramatic and profound response with no sign of active disease after 6 months of treatment. She did very well until the fall of 2023 when surveillance MRI showed recurrence of her brain mets. She underwent stereotactic radiation with some response. Here meds were changed to lorlatinib and according to her last MRI the five lesions in her brain are either shrinking or not changing - largest is 6mm. She continues to live her best life and remains symptom free. She is an active young lady, works, goes to the gym, hikes & camps and has just moved in with her new partner

The reality about kinase inhibitors is that at some point most will stop working. So in trying to stay one step ahead - Does anyone have information about cutting edge treatments that may only be available out of country - I include the USA in that group as we live in Canada

Thanks

AGB