ec012014 Posted September 21, 2015 Share Posted September 21, 2015 I'm writing on behalf of my 44 year-old brother who is a former smoker and was diagnosed in January 2014 with NSCLC (squamous cell) in his left lung with mets to the pleura. He started off on a clinical trial immunotherapy (MEDI 4736), went onto chemo (Gemicitabine and Carboplatin) for 6 months, another line of chemo (Doxetaxel and Ramucirumab) for 4 months before developing pneumonitis in his right lung, Immunology (Nivolumab) - following 1 dose developed mucositis and grade 3 mouth sores. He just started Mitomycin and Vinblastine. He is on Dilaudid PCA and methadone due to chest pains and tightness. I guess what I am asking in this forum is: Does anyone know of any other treatment he should be considering? He's sort of losing hope due to limited options given by his oncologist. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 21, 2015 Share Posted September 21, 2015 Welcome here. There is always hope. It took just over 4 years of near continuous treatment before I achieved a finding of no evidence of disease or NED. I had 3 failed surgeries, 4 failed stent insertions, 1 failed session of conventional radiation with adjunct chemotherapy, 2 failed sessions (6-cycles each session) of conventional chemotherapy, a failed session of oral chemotherapy, and finally a successful cyber knife that brought me to NED. I lived on hope for 4 years. My treatment timeframe was in the dark ages where few alternatives of chemotherapy were available. My oncologist kept trying to keep me alive till something hatched out of trial or research that would save my life and that is exactly what happened. There will be disillusionment, despair, and disappointment in the extreme but there will always be hope. Killing cancer cells with chemicals is so daunting, it is like "finding some agent that will dissolve away the left ear and leave the right ear unharmed." In spite of this, there is always hope. No I don't know of a treatment your brother should be considering save for the next idea his oncologist has. Encourage your brother to have his oncologist suggest options, limited they may be. If this doctor runs out of options, consult another for there is always hope. Stay the course. Tom ec012014 and bjacksontex 2 Quote Link to comment Share on other sites More sharing options...
CindyA Posted September 22, 2015 Share Posted September 22, 2015 Hi ec012014, Welcome to the Lung Cancer Support Community message boards. Sorry you have to be here. You are a great sister for reaching out and looking for information! I can offer you this link: http://www.emergingmed.com/networks/LUNGevity/ LUNGevity is working with EmergingMed & other partners in the lung cancer community to offer a free, confidential, personalized service that helps you understand which lung cancer clinical trials may be an option for you. LUNGevity also has a wealth of information on the website. Although I can not offer any medical advice, we have many survivors and caregivers here in the forums who may have a suggestion for you. Please come back often and let us know how you and your brother are doing. Cindy ec012014 1 Quote Link to comment Share on other sites More sharing options...
ec012014 Posted October 12, 2015 Author Share Posted October 12, 2015 Thank you for your replies and your helpful information. My brother is in constant pain. The pain meds he's on is not helping with the tightness in his chest and he's often confused/sleepy. His depression is slowly deepening. He is tired from the pain and the chemo. The only thing that keeps him going are his 2 young children. We are thinking of skipping a week of chemo because he's feeling so weak. Part of me doesn't want to because I'm afraid of what can happen if he does. Part of me wants him to get his spirits back up and if skipping chemo helps, then so be it. I'm not sure if I should keep posting to this discussion forum or if I should post to another forum topic. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 12, 2015 Share Posted October 12, 2015 Post where ever you wish. You don't need to use another board. Very sorry about your brother's pain. Many skip or postpone chemo because of quality of life concerns. There is no formula for treatment. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
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