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goldenretriever
@goldenretriever

Posts: 10
Joined: Dec 09, 2017

stage 4 inoperative squamous nsclc now on opdivo last line tx

Posted by @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.

REPLY

Hello @goldenretriever,

Thank you so much for sharing your story; I’m truly sorry to hear this.
I’m tagging our Mentor Linda, @llwortman, who is, (I quote), “a 9 year 5 month non small cell lung cancer survivor. I am alive because I was properly diagnosed at Mayo Clinic.” Linda posted this in June of this year, (https://connect.mayoclinic.org/discussion/ipf-how-to-cope-with-sick-feelings/), and I am certain she will join in with her insights.

I’d also like to invite @burrkay, @pearlgee @merilee @cheris @sistergoldenhair @shortshot80 @mryzuch @amws who have written about their or their loved ones’ experience with non-small cell lung cancer.

While we wait for other members to reply, here are a few discussions you may wish to go through:

https://connect.mayoclinic.org/discussion/non-small-cell-carcino-adenoma/
https://connect.mayoclinic.org/discussion/opdiva/
https://connect.mayoclinic.org/discussion/adenocarcinoma-lung-with-metastasis-pelvis-back-femur-bones-stage-iv/

@goldenretriever, I admire your resilience, and wish you all success. If I may ask, have other options been discussed, besides Opdivo?

So sorry to hear about your NSCLC!
I am a caregiver for my wife, who was diagnosed with Adenocarcinoma, stage 3a NSCLC in May, 2015. Her cancer had not metastasized at that time so Mayo removed 2 lower lobes of her right lung. After going thru chemo therapy, her scan the following year showed the tumors had grown and our Mayo oncologist re-staged her to stage 4 inoperable NSCLC.
He put her on Opdivo, but after 4 months of the therapy, the scans showed that she was not responding. The Mayo oncologist then ordered a lung biopsy, which was sent to Foundation One in Boston for a molecular study.
The study showed her mutation, although in her lungs was indeed a HER2 mutation, normally found in breast cancer patients. Our Mayo oncologist then put her on infusions of a trial doublet of herceptin and PERJETA.
My wife is still responding well to the infusions every 3 weeks. The last PET CT scan showed the tumors have stablized, for which we are extremely grateful. We are convinced that the Mayo oncologist who ordered the Trial is our guardian angel!
Although yours is a squamous cell (different that Adenocarcinoma), I would suggest you to talk with you oncologist about the possibility of having a molecular study done…best of luck…God bless!

@kanaazpereira

Hello @goldenretriever,

Thank you so much for sharing your story; I’m truly sorry to hear this.
I’m tagging our Mentor Linda, @llwortman, who is, (I quote), “a 9 year 5 month non small cell lung cancer survivor. I am alive because I was properly diagnosed at Mayo Clinic.” Linda posted this in June of this year, (https://connect.mayoclinic.org/discussion/ipf-how-to-cope-with-sick-feelings/), and I am certain she will join in with her insights.

I’d also like to invite @burrkay, @pearlgee @merilee @cheris @sistergoldenhair @shortshot80 @mryzuch @amws who have written about their or their loved ones’ experience with non-small cell lung cancer.

While we wait for other members to reply, here are a few discussions you may wish to go through:

https://connect.mayoclinic.org/discussion/non-small-cell-carcino-adenoma/
https://connect.mayoclinic.org/discussion/opdiva/
https://connect.mayoclinic.org/discussion/adenocarcinoma-lung-with-metastasis-pelvis-back-femur-bones-stage-iv/

@goldenretriever, I admire your resilience, and wish you all success. If I may ask, have other options been discussed, besides Opdivo?

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Golden Retrevier, Sorry to hear of your problems. I am shortshot80 and I have two kinds of lung cancer. ONe is plain lung cancer and Left lung is mesothelioa which has no cure. I have had five sessions of raidiation on my right lung and now have had also two rounds of chemo. So far I am doing ok with the chemo with exception of “fatigue” Also I am 84 years old which doesn’t help either. No sickness and no pain so far in my travels with the cancer. Just really tired. Hopefully they can find what to do with you that will help you. shortshot80 Nanacy

I apologize for taking so long to reply. We just spent 4 months in hospitals away from home. Three months were at the amazing Mayo Clinic in Rochester, MN. Life Saving. No one, no doctor, (we saw 12) no nurse, not team member at this amazing healing medical facility told us anyone would die.
After lung cancer surgery I had many people tell me( including my insurance company) I would die!
Mayo Clinic lives up to their very Mission Statement. So my question to you is this:
Where are you being treated ?
I know many stage 4 lung cancer patients who have been given a good quality of life, with proper diagnosis and proper treatment.
Have you given Mayo Clinic an opportunity?
January 11, 2018 I will have survived lung cancer for 10 years…because of proper diagnosis and proper treatment. And to think, for two years
local doctors told me my symptoms were psychological ! Compared to the life saving doctors and their teams at Mayo Clinic. Living is all about
“quality of Life” and Mayo Clinic has certainly given me that.

Let’s stay connected.
linda

@llwortman

I apologize for taking so long to reply. We just spent 4 months in hospitals away from home. Three months were at the amazing Mayo Clinic in Rochester, MN. Life Saving. No one, no doctor, (we saw 12) no nurse, not team member at this amazing healing medical facility told us anyone would die.
After lung cancer surgery I had many people tell me( including my insurance company) I would die!
Mayo Clinic lives up to their very Mission Statement. So my question to you is this:
Where are you being treated ?
I know many stage 4 lung cancer patients who have been given a good quality of life, with proper diagnosis and proper treatment.
Have you given Mayo Clinic an opportunity?
January 11, 2018 I will have survived lung cancer for 10 years…because of proper diagnosis and proper treatment. And to think, for two years
local doctors told me my symptoms were psychological ! Compared to the life saving doctors and their teams at Mayo Clinic. Living is all about
“quality of Life” and Mayo Clinic has certainly given me that.

Let’s stay connected.
linda

Jump to this post

Thank you for your response. We have not been to Mayo, however we have complete trust in his oncologist. He works here in Michigan, at the Johnson Cancer Center and also at Spectrum in Grand Rapids. We will see him again next week for another treatment and inquire about other treatments or tests if the Opdivo fails. At this point my quality of life is at a 4 out of 10, 10 being high. I am 73 years old, so taking that in to consideration, I think I’m not doing to bad right now. God willing, I will see Christmas and anything beyond that, we will deal with on a daily basis. I’m buying my dear wife a “forever us” ring for Christmas, and I am asking her, for a 1 year membership to the YMCA. Blessings to you, for a wonderful Christmas Season.

@burrkay

So sorry to hear about your NSCLC!
I am a caregiver for my wife, who was diagnosed with Adenocarcinoma, stage 3a NSCLC in May, 2015. Her cancer had not metastasized at that time so Mayo removed 2 lower lobes of her right lung. After going thru chemo therapy, her scan the following year showed the tumors had grown and our Mayo oncologist re-staged her to stage 4 inoperable NSCLC.
He put her on Opdivo, but after 4 months of the therapy, the scans showed that she was not responding. The Mayo oncologist then ordered a lung biopsy, which was sent to Foundation One in Boston for a molecular study.
The study showed her mutation, although in her lungs was indeed a HER2 mutation, normally found in breast cancer patients. Our Mayo oncologist then put her on infusions of a trial doublet of herceptin and PERJETA.
My wife is still responding well to the infusions every 3 weeks. The last PET CT scan showed the tumors have stablized, for which we are extremely grateful. We are convinced that the Mayo oncologist who ordered the Trial is our guardian angel!
Although yours is a squamous cell (different that Adenocarcinoma), I would suggest you to talk with you oncologist about the possibility of having a molecular study done…best of luck…God bless!

Jump to this post

Thank you for your reply. I appreciate your time. I initially had three biopsy’s so we know what they are dealing with. If they could have cut it out, things would look differently today. But it was to close to my heart, and now the new mutations are entangling one of my airways in the other lung. We will ask about other treatment options if the Opdivo isn’t working. Will have a CT scan in January if all is well. So we will just hope and pray for good results in January .We just take it one day at a time, and enjoy our family and each other. Each day is a gift and we are thankful for what we are given. Blessings to you and your wife, and wishes for a wonderful Christmas Season.

@kanaazpereira

Hello @goldenretriever,

Thank you so much for sharing your story; I’m truly sorry to hear this.
I’m tagging our Mentor Linda, @llwortman, who is, (I quote), “a 9 year 5 month non small cell lung cancer survivor. I am alive because I was properly diagnosed at Mayo Clinic.” Linda posted this in June of this year, (https://connect.mayoclinic.org/discussion/ipf-how-to-cope-with-sick-feelings/), and I am certain she will join in with her insights.

I’d also like to invite @burrkay, @pearlgee @merilee @cheris @sistergoldenhair @shortshot80 @mryzuch @amws who have written about their or their loved ones’ experience with non-small cell lung cancer.

While we wait for other members to reply, here are a few discussions you may wish to go through:

https://connect.mayoclinic.org/discussion/non-small-cell-carcino-adenoma/
https://connect.mayoclinic.org/discussion/opdiva/
https://connect.mayoclinic.org/discussion/adenocarcinoma-lung-with-metastasis-pelvis-back-femur-bones-stage-iv/

@goldenretriever, I admire your resilience, and wish you all success. If I may ask, have other options been discussed, besides Opdivo?

Jump to this post

Thank you for responding, my dear friend. I’m so glad you have not experienced any sickness from your treatments. I had the fatique with my chemo and radiation, as you have had. I’m 73. Right now, the Opdivo is not making me sick, so very thankful for that. I wish you many more days with the people you love the most. And continued success with your chemo treatment. Blessings, and warm wishes for a wonderful Christmas Season.

@kanaazpereira

Hello @goldenretriever,

Thank you so much for sharing your story; I’m truly sorry to hear this.
I’m tagging our Mentor Linda, @llwortman, who is, (I quote), “a 9 year 5 month non small cell lung cancer survivor. I am alive because I was properly diagnosed at Mayo Clinic.” Linda posted this in June of this year, (https://connect.mayoclinic.org/discussion/ipf-how-to-cope-with-sick-feelings/), and I am certain she will join in with her insights.

I’d also like to invite @burrkay, @pearlgee @merilee @cheris @sistergoldenhair @shortshot80 @mryzuch @amws who have written about their or their loved ones’ experience with non-small cell lung cancer.

While we wait for other members to reply, here are a few discussions you may wish to go through:

https://connect.mayoclinic.org/discussion/non-small-cell-carcino-adenoma/
https://connect.mayoclinic.org/discussion/opdiva/
https://connect.mayoclinic.org/discussion/adenocarcinoma-lung-with-metastasis-pelvis-back-femur-bones-stage-iv/

@goldenretriever, I admire your resilience, and wish you all success. If I may ask, have other options been discussed, besides Opdivo?

Jump to this post

Not at this time. I imagine they are waiting for my first CT scan, which they do after the 6th or 8th treatment. I’m at number 4 next week. Next week, I will ask what my options are, if the Opdivo does not work. Thank you for the sites related to cancer, for me to read. Thank you also, for responding to my posting. Blessings to you for a wonderful Christmas Season.

@llwortman

I apologize for taking so long to reply. We just spent 4 months in hospitals away from home. Three months were at the amazing Mayo Clinic in Rochester, MN. Life Saving. No one, no doctor, (we saw 12) no nurse, not team member at this amazing healing medical facility told us anyone would die.
After lung cancer surgery I had many people tell me( including my insurance company) I would die!
Mayo Clinic lives up to their very Mission Statement. So my question to you is this:
Where are you being treated ?
I know many stage 4 lung cancer patients who have been given a good quality of life, with proper diagnosis and proper treatment.
Have you given Mayo Clinic an opportunity?
January 11, 2018 I will have survived lung cancer for 10 years…because of proper diagnosis and proper treatment. And to think, for two years
local doctors told me my symptoms were psychological ! Compared to the life saving doctors and their teams at Mayo Clinic. Living is all about
“quality of Life” and Mayo Clinic has certainly given me that.

Let’s stay connected.
linda

Jump to this post

I add my welcome, Goldenretriever. I’m intrigued by your name. Do you have a golden retriever?
It is reassuring to have trust in your cancer care team. Please keep us posted on what you find out this coming week.

In the meantime, you may also be interested in this discussion in the cancer group:
– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

@llwortman

I apologize for taking so long to reply. We just spent 4 months in hospitals away from home. Three months were at the amazing Mayo Clinic in Rochester, MN. Life Saving. No one, no doctor, (we saw 12) no nurse, not team member at this amazing healing medical facility told us anyone would die.
After lung cancer surgery I had many people tell me( including my insurance company) I would die!
Mayo Clinic lives up to their very Mission Statement. So my question to you is this:
Where are you being treated ?
I know many stage 4 lung cancer patients who have been given a good quality of life, with proper diagnosis and proper treatment.
Have you given Mayo Clinic an opportunity?
January 11, 2018 I will have survived lung cancer for 10 years…because of proper diagnosis and proper treatment. And to think, for two years
local doctors told me my symptoms were psychological ! Compared to the life saving doctors and their teams at Mayo Clinic. Living is all about
“quality of Life” and Mayo Clinic has certainly given me that.

Let’s stay connected.
linda

Jump to this post

Wow. Can't believe how long it has been since I've visited this site. To answer your question Colleen, we did have a goldenretriever. He was a light colored male named Jake. He lived to be 16 years old, then old age got him. So now, where did I leave off ? I had a very severe lung infection, and thought I was going to die. But it was caught and treated in time. My second chest Xray showed the tumor and the lymph nodes shrinking. The best Christmas gift I could have received. I continue on Opdivo. I'm on my 8th treatment. Continue to feel more sick each day. But not to the point I want to stop the treatment. I am seeing a palautive care doctor. He manages my pain medsl instead of my primary care doctor. But I see my primary care doctor for everything else. Right now, with this 55 degree day here in Michigan, I am getting anxious to get my corvette out of storage, and drive it again, for as long as I feel able. But of course, Winter WILL return. Thanks for your correspondence. Blessings

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.

@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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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

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.

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@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.

@goldenretriever

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.

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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?

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