In December 2011 my husband was diagnosed with early stage NSCLC . He went on to have a lower left lobectomy but adjuvent chemo was not considered necessary . The years passed and he was down to an annual appointment with the surgeon . However, on 13th June 2017, at what was due to be the last appointment, we were given the news that the cancer had returned and was now stage 4. In the intervening years he had also had 6 months of chemotherapy for CLL ( a chronic Leukemia...in remission) We proceeded to have a horrific experience with our hospital , who made my husband wait 20 weeks to see the oncologist as this man kept cancelling appointments. Finally, we saw the Oncologist who basically said that we would not offer my husband any treatment at all . This was despite the fact that he was in good health and asymptomatic. We arranged for a second opinion and happily the Royal Marsden offered to take my husband as a patient. Tests showed that my husbands kidney function was not very good ( GFR 34) so platinum drugs were considered inappropriate. He also did not have any mutations /PD11 so is excluded from immunotherapy . His CLL means clinical trials are also not possible. He proceeded to have 6 months of Vinoralbine which worked for a short time and then stopped. He has now had 3 rounds of carboplatin as the Consultant advised that NICE regulations mean you have to have platinum chemo in order to access other drugs further on. Nearly a year later, he remains pretty fit, has lost no weight etc. We don't know what he will be offered next ( keytruda is a definite no) but I wondered if anyone knows about Nivolumab ( Opdivo) ? ...do you have to have mutations to obtain this drug?
Also, no-one has mentioned brain mets to us although it appears to be common. How do they detect these mets? He has regular scans but never of his head...
Thank you for reading my somewhat rambling post