Stage 4 inoperative squamous NSCLC, now on Opdivo last line Tx

Welcome back...sounds like you are doing pretty well...all things considered!
Keep positive and yes take it one day at a time!
It will be three years in May since my wife’s diagnosis and subsequent surgery! We that God for her excellent care and for every day He gives!

Hi Goldenretriever. I was originally dx with 3b squamous non operable nsclc in 2010. I went through the radiation, chemo etc and was ned until June 2016 when a f/u scan showed recurrence. This was confirmed with brochoscopy and PET scan. Put on carbo/gemstar until scan showed slight progression. Put on nivolumab but scan after 6 infusions showed progression and treatment was stopped. I don't know what is next. Have an appointment with radiologist May 14th and chemo oncologist June 11th. Waiting with bated breath until then. Feeling pretty good but concerned also.
Cheers, warm and positive thoughts, stay strong. Basil.

It has been so long since I have responded, or even thought about this site. I'm sorry that I can't report more positive information for everyone. To get to the point, we are now receiving the amazing support of Harbor Hospice in Muskegon Michigan.. We were told there was nothing more to be done for Jim. His Opdivo stopped working and a new tumor has formed in his other lung along with ground glass. Doctor said he is to weak to be in any trials, thus we were referred to Hospice to focus on quality of life. He has been given possibly 6 months. Shortly after this, the took a fall and broke a rib which took its tole on his physical and mental health. So here we are. We are so blessed we have our faith, friends, neighbors, church family, and family's loving help and support. We are facing each day focusing on our blessings, and dealing with new normal the best we can. I wish you continues success with your treatment, and many more days of feeling good. Gods speed my friend.

@goldenretriever, thank you for returning to the community with your update. While I'm sure this is not the news that you were hoping to tell us, it is comforting to know that you, Jim and your family are being taken care of in hospice care. I say this purposefully since my experience with hospice is that the care there includes the family. One member shared with me that hospice allowed her to be a wife and partner again since hospice took on the role of caregiving. I think that @IndianaScott had a similar experience when his wife entered hospice.

I encourage you to follow the Caregivers group if it might be helpful to you https://connect.mayoclinic.org/group/caregivers/tab/discussions/ In particular this discussion:
- the grieving process https://connect.mayoclinic.org/discussion/the-grieving-process/

I'm sending a virtual shoulder to add to the wide circle of support you have from faith, family and friends.

Hello goldenretriever- I have been thinking about you recently. I am a new mentor and I wanted to share a bit of my experience with you. I had to call in hospice for both my mother and twin sister. They are wonderful and I agree with @Colleen that they also include family in all decisions. I hope that this season is a magical one, surrounded by all your loved ones. If you can please keep us updated. How are you doing?

Thank you for your support. Through the Grace of God, Jim bounced back and is now feeling a little better. He is not as confused and is sleeping less. Still not eating very good. I hear this is a natural process. I am doing good. Jim and I talk a lot about the end of life and how blessed we've been all these years.. He is prepared and is not afraid to die. I thank God for that. I take each day as it comes, and make the best of each day I have left with Jim. Some days, it still doesn't feel real that he is going to die, I feel he'll just keep going as he is, and I don't let myself think about the end, but I do know the reality. I have faith that God will carry all of us down this path of life and death.

Hello again @goldenretriever. I am at loss for words at the sorrow you must be feeling. I am so glad that you are both talking about your lives together and that you know how he feels right now. Please take care of your self and please receive my hug to both of you.

Prayers from India @goldentretriever

@goldenretriever, you and Jim sound a lot like my mom and dad. In the last months, they had some of the best conversations of their marriage. They are conversations that my mom cherishes still and yet. He's been gone 5 years this Christmas. My dad was also not afraid to die. That helps, doesn't it? You're quite right that people often bounce back for a time, and those moments can be challenging as well as gifts, as you get pulled into reframing hope with every time he rallies and every time he declines.

I trust that with your faith, you also have community and people who are there to support you as you focus on Jim. Caregiving can be isolating. Often people don't know how to offer help or what to say. If someone says, "let me know if there is anything I can do", take them up on their offer. They will be grateful for your direction. Be specific. Ask them to pick up your groceries or bring by some prepared meals, shovel the snow, or whatever you might need done. Don't be afraid to ask. Think of it as you giving them the opportunity to be useful. Everyone wants to be needed and feel useful.

We're here when you need to talk about anything or to just be a virtual shoulder. Take care.

I'm not to good at this computer stuff. But I don't remember or can't find any update on your continued treatment after discovered progression after nivolumab. They just told my husband there was nothing they could do for him. And he went into Hospice care. How did you make out ? I do hope it was better than my husband. Blessings Mary Lou