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

Posted by goldenretriever @goldenretriever, Dec 9, 2017

After being NED for a year, my last CT scan showed tumor growing, and a new mass in other lung, besides small spots in the same lower lung. Have been put on Opdivo. I’ve had three treatments so far, given every two wks. Was told I would make it to Christmas, how far beyond that, was a gift. That being said, it appears that Opdivo prolongs life by about three months. Has anyone had any better results. I am aware some have lived years longer, but they don’t say what kind and stage of cancer they are treating. So I’m looking for someone with the same cancer as I have, that was inoperative. Thanks in advance for any response. I’m at peace with passing on, and am looking to a wonderful Christmas with my loving, supportive family.

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.

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@goldenretriever

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.

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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.

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Prayers from India @goldentretriever

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@goldenretriever

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.

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@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.

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@basil9

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.

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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

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Hi everyone, I received a private message from @goldenretriever that she wanted to share with all of you. This is her message:

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
FROM @goldenretriever

It is with a heavy heart that I write this update regarding my amazing husband, Jim. His last appointment with his oncologist, we were given the news that there was nothing more to do for Jim and it was suggested to place our focus on quality of life. He was given approximately 6 months to live. It seemed unreal. It was explained, Jim was to weak to participate in a trial. It was suggested we contact Hospice to help with quality of life. We did that weekend, and for the next four weeks , Jim went down hill each week. For three days he lost much of his memory, slept all day and ate very little, only drank Boost. He bounced back for four days and then went back into the prior state. He did this twice, which his oncologist said he had never seen happen. He never recovered after the second time. I took care of Jim in our home with the 24 hour help of our 2 sons. I could not have done it with out their help. Jim required meds every hour around the clock. Three day later Jim passes with all his family at his side. The most saddest moment in my entire life. I know he is resting in peace now and could not wish him back to suffer again, but I miss him beyond what words can express. I sleep on his side of the bed so I won't have to look over and see that he is not there. This helps some.

I know our Lord and Savior will carry me, and our family through this chapter in our lives. I would highly suggest each family who is going through cancer treatment, get their old pictures out and go through them. We had to do this for Jim's service. The family had such an amazing time doing this, recalling trips taken in the long ago past. I wish we would have done this while Jim was still with us, but he never felt good enough to do it. So do it before your loved one gets to worn out.

So that's the end of our journey, dealing with cancer in our family. We now will have to adjust to the new normal.
I wish everyone, who continues to deal with this disease, the courage to continue on, each day with hope and encouragement from others close to you and from this amazing site.

Blessing to all, Mary Lou

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@colleenyoung

Hi everyone, I received a private message from @goldenretriever that she wanted to share with all of you. This is her message:

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
FROM @goldenretriever

It is with a heavy heart that I write this update regarding my amazing husband, Jim. His last appointment with his oncologist, we were given the news that there was nothing more to do for Jim and it was suggested to place our focus on quality of life. He was given approximately 6 months to live. It seemed unreal. It was explained, Jim was to weak to participate in a trial. It was suggested we contact Hospice to help with quality of life. We did that weekend, and for the next four weeks , Jim went down hill each week. For three days he lost much of his memory, slept all day and ate very little, only drank Boost. He bounced back for four days and then went back into the prior state. He did this twice, which his oncologist said he had never seen happen. He never recovered after the second time. I took care of Jim in our home with the 24 hour help of our 2 sons. I could not have done it with out their help. Jim required meds every hour around the clock. Three day later Jim passes with all his family at his side. The most saddest moment in my entire life. I know he is resting in peace now and could not wish him back to suffer again, but I miss him beyond what words can express. I sleep on his side of the bed so I won't have to look over and see that he is not there. This helps some.

I know our Lord and Savior will carry me, and our family through this chapter in our lives. I would highly suggest each family who is going through cancer treatment, get their old pictures out and go through them. We had to do this for Jim's service. The family had such an amazing time doing this, recalling trips taken in the long ago past. I wish we would have done this while Jim was still with us, but he never felt good enough to do it. So do it before your loved one gets to worn out.

So that's the end of our journey, dealing with cancer in our family. We now will have to adjust to the new normal.
I wish everyone, who continues to deal with this disease, the courage to continue on, each day with hope and encouragement from others close to you and from this amazing site.

Blessing to all, Mary Lou

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Oh poor goldenretriever. My heart is with her and her family. Her husband had a loving and dedicated family. Is there a grief group?

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@colleenyoung

Hi everyone, I received a private message from @goldenretriever that she wanted to share with all of you. This is her message:

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
FROM @goldenretriever

It is with a heavy heart that I write this update regarding my amazing husband, Jim. His last appointment with his oncologist, we were given the news that there was nothing more to do for Jim and it was suggested to place our focus on quality of life. He was given approximately 6 months to live. It seemed unreal. It was explained, Jim was to weak to participate in a trial. It was suggested we contact Hospice to help with quality of life. We did that weekend, and for the next four weeks , Jim went down hill each week. For three days he lost much of his memory, slept all day and ate very little, only drank Boost. He bounced back for four days and then went back into the prior state. He did this twice, which his oncologist said he had never seen happen. He never recovered after the second time. I took care of Jim in our home with the 24 hour help of our 2 sons. I could not have done it with out their help. Jim required meds every hour around the clock. Three day later Jim passes with all his family at his side. The most saddest moment in my entire life. I know he is resting in peace now and could not wish him back to suffer again, but I miss him beyond what words can express. I sleep on his side of the bed so I won't have to look over and see that he is not there. This helps some.

I know our Lord and Savior will carry me, and our family through this chapter in our lives. I would highly suggest each family who is going through cancer treatment, get their old pictures out and go through them. We had to do this for Jim's service. The family had such an amazing time doing this, recalling trips taken in the long ago past. I wish we would have done this while Jim was still with us, but he never felt good enough to do it. So do it before your loved one gets to worn out.

So that's the end of our journey, dealing with cancer in our family. We now will have to adjust to the new normal.
I wish everyone, who continues to deal with this disease, the courage to continue on, each day with hope and encouragement from others close to you and from this amazing site.

Blessing to all, Mary Lou

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Our thoughts and prayers to you and your family Mary Lou.
Thanks for sharing this part of your journey.

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@merpreb

Oh poor goldenretriever. My heart is with her and her family. Her husband had a loving and dedicated family. Is there a grief group?

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Good recommendation, @merpreb. Currently we have several discussions on Connect related to loss and grief:
– The Journey of Grieving https://connect.mayoclinic.org/discussion/the-journey-of-grieving/
– Loss and Grief: How are you doing? https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/
– the grieving process https://connect.mayoclinic.org/discussion/the-grieving-process/
– Loss and Grief in Caregiving https://connect.mayoclinic.org/discussion/loss-and-grief-in-caregiving/

A new group dedicated to Loss and Grief will be opened next month.

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Agreed..very important.
Living in a retirement community we witness lots of grief by the loved ones left behind. “Grief Share” is very important and helpful!

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@colleenyoung

Hi everyone, I received a private message from @goldenretriever that she wanted to share with all of you. This is her message:

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
FROM @goldenretriever

It is with a heavy heart that I write this update regarding my amazing husband, Jim. His last appointment with his oncologist, we were given the news that there was nothing more to do for Jim and it was suggested to place our focus on quality of life. He was given approximately 6 months to live. It seemed unreal. It was explained, Jim was to weak to participate in a trial. It was suggested we contact Hospice to help with quality of life. We did that weekend, and for the next four weeks , Jim went down hill each week. For three days he lost much of his memory, slept all day and ate very little, only drank Boost. He bounced back for four days and then went back into the prior state. He did this twice, which his oncologist said he had never seen happen. He never recovered after the second time. I took care of Jim in our home with the 24 hour help of our 2 sons. I could not have done it with out their help. Jim required meds every hour around the clock. Three day later Jim passes with all his family at his side. The most saddest moment in my entire life. I know he is resting in peace now and could not wish him back to suffer again, but I miss him beyond what words can express. I sleep on his side of the bed so I won't have to look over and see that he is not there. This helps some.

I know our Lord and Savior will carry me, and our family through this chapter in our lives. I would highly suggest each family who is going through cancer treatment, get their old pictures out and go through them. We had to do this for Jim's service. The family had such an amazing time doing this, recalling trips taken in the long ago past. I wish we would have done this while Jim was still with us, but he never felt good enough to do it. So do it before your loved one gets to worn out.

So that's the end of our journey, dealing with cancer in our family. We now will have to adjust to the new normal.
I wish everyone, who continues to deal with this disease, the courage to continue on, each day with hope and encouragement from others close to you and from this amazing site.

Blessing to all, Mary Lou

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Very Sad..
I had a client call me yesterday, his wife lost her battle with Endometriosis Cancer. He missed his train to New York. I felt so bad for him. His wife died and he is calling me to contact Amtrak for him. It would of been the last thing on my mind especially since she passed away about 4 hours prior to his travels for work.
God Rest all the lost souls this week.

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Jackie- 🙁

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@colleenyoung

Good recommendation, @merpreb. Currently we have several discussions on Connect related to loss and grief:
– The Journey of Grieving https://connect.mayoclinic.org/discussion/the-journey-of-grieving/
– Loss and Grief: How are you doing? https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/
– the grieving process https://connect.mayoclinic.org/discussion/the-grieving-process/
– Loss and Grief in Caregiving https://connect.mayoclinic.org/discussion/loss-and-grief-in-caregiving/

A new group dedicated to Loss and Grief will be opened next month.

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@colleenyoung– Did a new group ever open up for Loss and Grief as stated above?

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@merpreb

@colleenyoung– Did a new group ever open up for Loss and Grief as stated above?

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Yes, @merpreb. Here is the direct link to the Loss & Grief group https://connect.mayoclinic.org/group/loss-grief/
Thanks for the reminder to post it here.

Advance tip:
To see all groups on Connect, go the Group directory: https://connect.mayoclinic.org/groups/
You can sort the groups by Recently Created to see groups that have newly opened.

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