Here for Dad Posted December 26, 2016 Share Posted December 26, 2016 Hello, I have been reading through discussions and posts on here for the last week and it has been a fantastic resource - so much caring and first hand experience and knowledge... it's really a great place. I am here because my father was diagnosed with Stage iv NSCLC with mets to the brain, back on October 25th. He is 67 years old and the diagnosis came quite by accident. He had fallen off of an unstable ladder while changing a light fixture and both his chest and head were impacted from the fall so an X-ray and CT scan were done to rule out breaks. Turned out that they found a lesion on the lung and a spot on his brain. We were all surprised as he had not been experiencing any symptoms. Please bear with me and excuse the lengthy write up - so much has happened in the 9 weeks ... He had a lung biopsy done week of October 24th and in the meantime, we started consultations for Stereotactic Radiation for the small brain tumour (as this needed to be treated right away). Nov. 4th - we met with his general oncologist to review the biopsy results only to be met with the news that they had not been able to gather a good enough sample in order to get the information required to put together a treatment plan. Since we were going to treat the brain first, the biopsy result was not so urgent (as he would not start any chemo until after the brain radiation. Nov. 16th - he underwent the stereotactic radiation treatment. He will go back for a follow up MRI on January 16th to see how the tumour was affected. Dec. 2nd - another meeting with his oncologist to review biopsy results and also review a recent chest scan that had been done earlier in the week. Biopsy confirmed NSCLC Adenocarcinoma (assumed to be wild type, but hey were still awaiting genetic testing results). The review of the scan showed very little change in the size of the tumour. Due to the imaging, the fact that my dad was still not experiencing symptoms and the fact that we were still waiting on some of the biopsy results, the decision was made to not proceed with any treatment, but to wait another two weeks until we had all results in. Dec.16th - Latest testing confirms that there is no presence of EGFR mutation but shows that the tumour does have a PDL-1 expression of greater than 50%, which meant that aside from standard chemotherapy, Ketruda was also an option for treatment. Although, not available under healthcare until a 2nd line setting. Again, seeing as Dad was not experiencing symptoms and it being so close to the holidays, we decided to wait until the new year to decide on the best approach to treatment. (Note: we were considering the private route for first line treatment with Keytruda). We were not due to see the doctor again until January 10th Dec. 20th - My Dad coughed up blood for the first time since being diagnosed. Dec. 22nd - Back to see the doctor to let him know that we felt it necessary to start a treatment right away and based on details from the previous appt., (treatment being more tolerable, outcomes a little more favourable) felt that Keytruda was the right approach and planned to access it via a private infusion clinic. The doctor recommended Cisplatin/ Alimta as a first attempt at treatment based on having the resources of the hospital team available to him and also knowing that Keytruda would be an option for 2nd line. Note: This is the only dr. appointment that I was not able to attend so I did not have the opportunity to ask all of the questions that I wish I could have. To Come- My Dad will have a first round chemotherapy treatment (of Cisplatin and Alimta) on January 6th. Based on my reading, I see that Cisplatin is of the more aggressive/ harsher/ less tolerated treatments. I would be interested in hearing of anyones experience with it. Has anyone here had Keytruda as a first line treatment and what was your experience with that? Also - it's been a long time since the lung cancer diagnosis ... without treatment - Has anyone else had a similar experience where treatment has been delayed due to other circumstances and what was your outcome? I wish you all a happy and healthy 2017. Thank you for your time and input. Stephanie Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.