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Shed some Light..

JustTryin2Cope
Posts: 1
Joined: Jan 2016

I'm currently helping care for my father who was diagnosed in Dec 2014 with Stage 3 NSCLC and it's been a struggle. He showed lots of improvement to a "no active cancer" report in July 2015, just to have it back worse than ever end of August 2015. He's already had two rounds of radiation to his chest due to the mass being inoperable and blocking his airway.

Since chemo didn't seem to "keep it gone", the doctor felt chemo isn't best option and due to new FDA approval on Opdivo he started that in October. Since then, the mass has actually grown and is closing off most of his right lung. His overall lung health is extremely poor due to COPD & smoking for 30 plus years, but I'm just wondering if there's ANYONE out there currently dealing with Opdivo or have had any airway blockages due to tumors that can maybe shed some light or share their experience. 

My father can barely walk from bed to bathroom without his oxygen plummeting and he's on 5 liters/max at home concentrator. He has one stent input into his airway already and they said unable to input another at section where needed because noway to "mount" it there. We're all growing discouraged with the treatment and outcomes/side effects, and we're just looking to relate and/or hear other stories whether good or bad to maybe offer some hope in some way to keep us going and fighting. 

I see my father growing less ambitious by the day and I don't want to see him struggle so badly even if its inevitable. We just want to keep his spirits up the best way we can. 

Every person and every case is different, but due to his mass being on the outside of the lung and collapsing his airway, it's such a crazy circumstance..maybe SOMEONE else has dealt with. 

Sending love & prayers to you all, but would definitely appreciate any suggestions and/or feedback. :) 

Thanks! 

dennycee
Posts: 836
Joined: Mar 2011

Opdivo can cause pseudo progression for 8 weeks or so before the tumor starts to shrink. 

Dleu_2000
Posts: 3
Joined: Mar 2016

hi there. I am 35 yo with stage four nsclc with several masses in my liver and my lymph nodes around my heart are also effected. My lung cancer is only a small leision in my left lung. I have been a smoker since age 18 as well. I was diagnosed in April of 2015.  The doctors have had me on three different types of chemo and then Tarceva as well.  opdivo has recently been part of my regimen for over two months now. I will be getting my 5th dose next week. I don't feel like it is working. My liver is very enlarged at this point and I am having some tough side effects as well. I have had joint pain so bad that I was hospitalized for a few days. After dose three, the joint pain subsided. At this point I would say the worst side effect is fatigue. I could literally sleep until 3 pm every day. When I wake up, it feels like I have a hangover for a good two hours. I know that everyone's experience is different, but I just thought I would share mine with you. I know that it takes some time for the drug to start working, so I wish the best of luck to you and your father. 

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