Living with lung cancer - Introduce yourself & come say hi

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@wallyk

I came to Mayo (Rochester) in June 2016 to go through the Executive Health Program. As a new patient, they did a CT on my internal organs and found a nodule in my left lung (upper lobe). I had another CT done of it in December 2016 with no change. Last month I returned to Mayo and the CT show that the nodule had grown and changed. I live in Michigan but will be coming to Mayo Rochester in two weeks for minimally invasive surgery to remove the growth. I am hopefully ‘one of the lucky ones’ whose cancer was caught early and will be very treatable. I had breast cancer (the right breast) 16 years ago and had chemo and radiation then. I am wondering how painful/uncomfortable one is after this surgery – is it breathing that hurts? raising the arm? what???

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Hi wallyk-
Consider yourself fortunate that you had gone through the executive health program! Mayo has the best medical staff in the world, in my opinion. We consider them FAMILY!!
My wife was not so lucky! We had followed the recommendation of a local Pulmonology doctor nearby for 15 months or more, before we sought help from Mayo. We credit our family with encouraging us to make the trip to Rochester, some 1100 miles away!
Although she is now stage 4, she is alive and back to enjoying life today…thanks to the excellent care at Mayo!
My wife had two lobes in her right lung removed at Mayo, Rochester in May, 2015 using the VATS procedure.
As for pain, yes she struggled with it for a few days, but that’s what pain pills are for-hah. She had the surgery on a Friday and by the following Tuesday she was on her way home in South Carolina.
The important thing is that the doctors at Mayo are very diligent to check the surrounding lymph nodes to see that the Cancer has not invaded other areas (metastatic cancer). In my wife’s case it remained undetected, but a year later had in fact metastasized to the left lung. She was fortunate to have signed up for chemo treatments, which later qualified her for new therapies through clinical trials.
Although Mayo had done the usual studies of the biopsies, they discovered 18 months later, through a molecular study that her cancer, although in the lungs, was from the HER2 mutation; which is normally found in breast cancer patients. Mayo then enrolled her in a clinical trial so she is now getting an infusion of a doublet (herceptin/perjeta) every three weeks. That seems to be working as the tumors are now indeed shrinking…
Bottom line be prepared for some pain, but know that it will be over in a few days…just like any other surgery. However, be sure they order a molecular study right away, so you don’t have to do another biopsy later – that was especially uncomfortable for my wife.
Best of luck with your journey…stay brave and positive…be sure you have a good support group through your church, family and neighbors…they will be an important key to your success!

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@colleenyoung

Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major @bestcare and @sistergoldenhair

I’d like to invite you to the new group dedicated to discussions about lung cancer. It’s a space where we can ask questions, share tips and learn from each other. Whether you in treatment or caring for someone with lung cancer, or you’re a lung cancer survivor, please join us.

Pull up a chair and tell us a bit about yourself.

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Dear Lori:
Thank you for reaching out to Connect. You are a brave woman, wife and mother to share your story. I am following you as a mentor who is a 9 year 6 month lung cancer (non small cell adenocarcinoma) survivor.
I was treated at Mayo Clinic Rochester. For two years I had a chocking cough and left shoulder pain that was later found to be the tumor. I thought I has SARS or TB…I was denied a chest X-ray because I looked good! I would learn local doctors just were not skilled to know it was lung cancer…the kicker is, I neVer smoked!
Research has developed so much. I too have the EGFR mutated gene. There is more hope now than ever before. I have met other stage IV who are living a god quality of life, it can be done!
I trust my Rochester Mayo Clinic doctors who have stayed by my side. When asked, do you want us to work with your local doctors ? I said, NO!
I believe that Mayo teams embraced me knowing I would travel the distance Not only miles
But also with my mind body thinking. So stay positive, ok?

I encourage you to watch Dr Amit Sood’sTED Talk. It was his Paced Breathing 2008 Research Study that allowed me to accept my lung cancer and then let it go. With his resiliency training, teaching me to be happy, each and every momemnt he give me permission through meditation and training, on how to take time ‘for me’ and my body to fight and heal. It is in part, why I believe that I am alive and living a great quality of life.
My loving husband took the lead
as a general fighting with me and said, “you belong outside, let’s go”! He tied my shoes when I couldn’t even bend over because of the pain.Breathing deeper and breathing through the cold outdoors seemed to help! No mater how afraid I was, I had to put one foot in front of the other and keep going from
The brink of life back to the shocking diagnosis.
So when I look up at the sky I give thanks. I have learned to give silent blessings to people whom pass by me on the street and to people I know. The out reach is healing.
We never know what’s around the corner do we? So, I want to encourage you to fight, and you too, will check off things off that ‘bucket list’ like I have. Life’s a journey and I know you are strong!
My dear Lori, let’s stay connected! Reach out anytime ok? You deserve a great big cyber hug! You are not alone.
Linda

Liked by lbaum

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@colleenyoung

Hi all,
It’s been a while since we’ve heard from many of you. @merilee and @bestcare How are you doing?
@burrkay How is your wife doing?

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@burrkay, that sounds frustrating and confusing indeed. Did you also send a message through the portal? I hope you get answers this week.

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@wallyk

I came to Mayo (Rochester) in June 2016 to go through the Executive Health Program. As a new patient, they did a CT on my internal organs and found a nodule in my left lung (upper lobe). I had another CT done of it in December 2016 with no change. Last month I returned to Mayo and the CT show that the nodule had grown and changed. I live in Michigan but will be coming to Mayo Rochester in two weeks for minimally invasive surgery to remove the growth. I am hopefully ‘one of the lucky ones’ whose cancer was caught early and will be very treatable. I had breast cancer (the right breast) 16 years ago and had chemo and radiation then. I am wondering how painful/uncomfortable one is after this surgery – is it breathing that hurts? raising the arm? what???

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Thanks so much for your thoughtful and thorough response. I greatly appreciate your taking the time to share your thoughts and information with me. Best wishes to you and your wife.

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@colleenyoung

Hi all,
It’s been a while since we’ve heard from many of you. @merilee and @bestcare How are you doing?
@burrkay How is your wife doing?

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Yep frustrating!Just recd a letter from Mayo today saying Dr Menefee is “transitioning out of Mayo Clinic” – so that I guess explains it.Thanks!

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@colleenyoung

Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major @bestcare and @sistergoldenhair

I’d like to invite you to the new group dedicated to discussions about lung cancer. It’s a space where we can ask questions, share tips and learn from each other. Whether you in treatment or caring for someone with lung cancer, or you’re a lung cancer survivor, please join us.

Pull up a chair and tell us a bit about yourself.

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Hi @lorinusbaum,
I’d like to also welcome you to the group. I simply can’t imagine receiving the news that you did, especially at 46 years old with young children. I appreciate your not wanting anything sugar coated. We’re here to support you in the way you need support. Straight up. You can speak frankly about the things that concern you, scare you or darn right infuriate you. No judgement here.

I hope the reduced dosage of Tarceva is easier to tolerate. What side effects are you having to manage? Are you also being managed by a palliative care team? I know in another discussion thread you talked about living with unmanaged pain. I hate to hear that. Have you seen a cancer pain specialist?

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@colleenyoung

Hi all,
It’s been a while since we’ve heard from many of you. @merilee and @bestcare How are you doing?
@burrkay How is your wife doing?

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Perhaps that explains the delay in communication, but you should still be able to get the scans reviewed. Did they explain who will be reviewing your wife’s tests?

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@burrkay

It’s been awhile! Thank you Colleen for moderating and Linda for participating as an amazing survivor of NSCLC!
My wife continues with her treatment of the trial doublet herceptin/perjeta (sponsored by Genetech); which was recommended by Mayo for her unusual stage IV lung cancer with the HERR2 mutation. She has now had 4 infusions and just today had a scan and echo gram to check her progress before continuing with her treatment next week.
As you know, her non small cell lung cancer was diagnosed in April, 2015 and she underwent a VATS bi-lobectimy of her right lung Mother’s Day that year. After having previously had Cisplatin chemo and nine rounds of Opdivo, she now amazingly tolerates the new doublet well.
We pray for good reports next week.
If there is one thing we have learned from all this, it’s that we now live “one day at a time”! Not planning too far out, we have booked a cruise in May with the hopes that she can tolerate being spoiled for two weeks before returning for more infusions!
God bless all the cancer patients/survivors, and God bless the good people at Mayo- Rochesrer and Mayo-Jacksonville. And God bless our local oncologist and staff here in South Carolina for ther very professional on-going care.

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Welcome Back to Connect: It has been too long. But so glad to hear you are keeping busy.
If I remember correctly we have the same Thorasic Dr. at Mayo Rochester ? Have you
contacted him? I have never had to wait for follow up blood work, CT scan report…hummm
And remember the wonderful Jacksonville Mayo Dr Mathew Thomas in Thorasic and
Dr Margaret Johnson in Pulmonology, I am quiet sure they will remember you both.
I will be thinking of you. Let’s stay connected, ok?
Linda

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@burrkay

It’s been awhile! Thank you Colleen for moderating and Linda for participating as an amazing survivor of NSCLC!
My wife continues with her treatment of the trial doublet herceptin/perjeta (sponsored by Genetech); which was recommended by Mayo for her unusual stage IV lung cancer with the HERR2 mutation. She has now had 4 infusions and just today had a scan and echo gram to check her progress before continuing with her treatment next week.
As you know, her non small cell lung cancer was diagnosed in April, 2015 and she underwent a VATS bi-lobectimy of her right lung Mother’s Day that year. After having previously had Cisplatin chemo and nine rounds of Opdivo, she now amazingly tolerates the new doublet well.
We pray for good reports next week.
If there is one thing we have learned from all this, it’s that we now live “one day at a time”! Not planning too far out, we have booked a cruise in May with the hopes that she can tolerate being spoiled for two weeks before returning for more infusions!
God bless all the cancer patients/survivors, and God bless the good people at Mayo- Rochesrer and Mayo-Jacksonville. And God bless our local oncologist and staff here in South Carolina for ther very professional on-going care.

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I was just emailed an amazing articles about lungs “An Unexpected New Lung Function Has Been Found – They Make Blood “NATURE just published the research by Looney and his team. This is an absolute “Must Read”

An Unexpected New Lung Function Has Been Found – They Make Blood https://www.sciencealert.com/an-unexpected-new-lung-function-has-been-discovered-and-it-could-disrupt-decades-of-scientific-thought

Liked by Wally

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@wallyk

I came to Mayo (Rochester) in June 2016 to go through the Executive Health Program. As a new patient, they did a CT on my internal organs and found a nodule in my left lung (upper lobe). I had another CT done of it in December 2016 with no change. Last month I returned to Mayo and the CT show that the nodule had grown and changed. I live in Michigan but will be coming to Mayo Rochester in two weeks for minimally invasive surgery to remove the growth. I am hopefully ‘one of the lucky ones’ whose cancer was caught early and will be very treatable. I had breast cancer (the right breast) 16 years ago and had chemo and radiation then. I am wondering how painful/uncomfortable one is after this surgery – is it breathing that hurts? raising the arm? what???

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Hi Wallyk:
I have been reading about your journey with lung cancer. I am a 9 year 6 month survivor of lung cancer (but who’s counting) ?Congratulations!, on your 16 year survival with breast cancer. I an hoping that ‘my wish in life is, that very soon, lung cancer patients will have the success stories that breast, prostate an colon caner survivors do. Think researchers are very close to making my wish come true.
You asked about the pain? Looking back, I have asked myself if the “Shock of diagnosis” adds to the pain? Also, I am someone who is
allergic to most every pain killer known to human beings. With that said, in 3-5 days post surgery, I was peddling a bike in St Francis 5 – rehab center. I walked heal toe with all of the contraptions attached to my body.I know now there are new contraptions.

I realized someone had to make the staff laugh once in a while…so I threw paper items into the waste baske when a nurse or doctor waled into my room (which was often;-)…. and said, 2 points! I also had pulmonary lung function of 110% when I walked into the hospital just 48 hours after my diagnosis. I did have the entire upper left lung lobe, and a wedge of my lower left lung lobe removed with VATs procedure.
Mayo Clinic Rochester is the best in the world! My thorasic surgeon is world famous and he has promised to follow me until death do we part. (Ha, No pun intended!) I too was properly diagnosed by my Executive Medicine, wonderful, doctor, who also continues to follow my every medical move. I am so grateful for the teams that saved my life, my husband and I started a non profit to raise lung cancer & lung health awareness…because I quickly learned that lung cancer researcher suffers the same unfair stigma that I have been challenged with …and the kicker is, I neVer smoked!
I have referred a dozen or more patients to Mayo with lung cancer, they all have had a great quality of life. There is a couple we know and both smoked, we literally drug them to Mayo Thorasic department, they had wedge surgery, and didn’t miss a beat. They too still return to Mayo Clinic for follow up. Did I tell you we drive one hour, fly two hours and then drive 90 minutes to the DMC…and it is well worth our time and our money.
I would like to suggest that you google, Dr Amit Sood and watch his TED Talk about resiliency, happiness and taking time every day…or several times a day “just for you”…It was after I had returned home to 6,000 feet elevation, that I was recommended to be in his ‘Paced Breathing Research Study’. This was a HUGE part of my ability to accept my lung cancer, learn how to live and breath again, and totally change my life. No one knows what’s around the corner. But I practice his teachings daily and nightly and in the middle of the night if I cannot sleep. It helped the pain in my brain, heart and lungs and my happiness as a survivor of lung cancer.
Now almost 10 years later, you will do great! You are in the best place in the world with a lung cancer diagnosis. So, rest up, eat well, be well hydrated, think positive, think more positive and tell your brain and body to heal this challenge and go live. If you conquered 16 years…heck, you are my hero!
So please, let’s stay connected. I’m sending you silent blessings and I will be thinking of you. Oh, with most of my left lung missing
I run 10K race’s, I mountain bike about 9 miles a day, and I am my husbands crew chief, when he races his 35 FORD with a flat head engine that he souped up and loves going 150-200 mph!!! My loving husband, loves telling people, she’s in better shape now than before lung cancer.
I tell people, Lung Cancer became my blessing!
You deserve a cyber hug!
Linda

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@wallyk

I came to Mayo (Rochester) in June 2016 to go through the Executive Health Program. As a new patient, they did a CT on my internal organs and found a nodule in my left lung (upper lobe). I had another CT done of it in December 2016 with no change. Last month I returned to Mayo and the CT show that the nodule had grown and changed. I live in Michigan but will be coming to Mayo Rochester in two weeks for minimally invasive surgery to remove the growth. I am hopefully ‘one of the lucky ones’ whose cancer was caught early and will be very treatable. I had breast cancer (the right breast) 16 years ago and had chemo and radiation then. I am wondering how painful/uncomfortable one is after this surgery – is it breathing that hurts? raising the arm? what???

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THANK YOU!! You definitely provided me with the best upper I’ve had since my diagnosis. Your story needs to be told WIDELY – not just though Mayo Clinic Connect.

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@burrkay

It’s been awhile! Thank you Colleen for moderating and Linda for participating as an amazing survivor of NSCLC!
My wife continues with her treatment of the trial doublet herceptin/perjeta (sponsored by Genetech); which was recommended by Mayo for her unusual stage IV lung cancer with the HERR2 mutation. She has now had 4 infusions and just today had a scan and echo gram to check her progress before continuing with her treatment next week.
As you know, her non small cell lung cancer was diagnosed in April, 2015 and she underwent a VATS bi-lobectimy of her right lung Mother’s Day that year. After having previously had Cisplatin chemo and nine rounds of Opdivo, she now amazingly tolerates the new doublet well.
We pray for good reports next week.
If there is one thing we have learned from all this, it’s that we now live “one day at a time”! Not planning too far out, we have booked a cruise in May with the hopes that she can tolerate being spoiled for two weeks before returning for more infusions!
God bless all the cancer patients/survivors, and God bless the good people at Mayo- Rochesrer and Mayo-Jacksonville. And God bless our local oncologist and staff here in South Carolina for ther very professional on-going care.

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@llwortman,
Hi Linda. I could not find this article that you just recommended to read. Many
sites came up with the same title, so I do not know if it is the same article.
They weren't on trusted sites. I looked it up on the Mayo Clinic site. This is
what they had to say about it. Said that it is extremely rare that the lungs
make these Megakaryocytes blood cells. They have only been detected posthumously
from autopsy. They are the kind of cells that cause cancers in the blood and
tumors. My guess is that it is the bodie's way of trying to compensate for the
bone marrow not doing all that it should. It is interesting that the lungs can
do something other than gas exchange. Who knows, in the future, they may be able
to tweak the genes and have the lungs produce some good blood cells. Mind you,
my take on this may be off, but it is how my little brain interpreted it.
 

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@burrkay

It’s been awhile! Thank you Colleen for moderating and Linda for participating as an amazing survivor of NSCLC!
My wife continues with her treatment of the trial doublet herceptin/perjeta (sponsored by Genetech); which was recommended by Mayo for her unusual stage IV lung cancer with the HERR2 mutation. She has now had 4 infusions and just today had a scan and echo gram to check her progress before continuing with her treatment next week.
As you know, her non small cell lung cancer was diagnosed in April, 2015 and she underwent a VATS bi-lobectimy of her right lung Mother’s Day that year. After having previously had Cisplatin chemo and nine rounds of Opdivo, she now amazingly tolerates the new doublet well.
We pray for good reports next week.
If there is one thing we have learned from all this, it’s that we now live “one day at a time”! Not planning too far out, we have booked a cruise in May with the hopes that she can tolerate being spoiled for two weeks before returning for more infusions!
God bless all the cancer patients/survivors, and God bless the good people at Mayo- Rochesrer and Mayo-Jacksonville. And God bless our local oncologist and staff here in South Carolina for ther very professional on-going care.

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@llwortman Thank
you for turning me onto Looney and his research team. They have LOTS of
published articles on the UCSF site about lung research that looks very
interesting. (UCSF, for those that don't know, is the University of California
San Francisco. They are number one in lung transplant survivals)
 

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@wallyk

I came to Mayo (Rochester) in June 2016 to go through the Executive Health Program. As a new patient, they did a CT on my internal organs and found a nodule in my left lung (upper lobe). I had another CT done of it in December 2016 with no change. Last month I returned to Mayo and the CT show that the nodule had grown and changed. I live in Michigan but will be coming to Mayo Rochester in two weeks for minimally invasive surgery to remove the growth. I am hopefully ‘one of the lucky ones’ whose cancer was caught early and will be very treatable. I had breast cancer (the right breast) 16 years ago and had chemo and radiation then. I am wondering how painful/uncomfortable one is after this surgery – is it breathing that hurts? raising the arm? what???

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@llwortman Linda, if you don't mind my asking; what stage and kind was your
lung cancer? Thanks!
 

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@wallyk

I came to Mayo (Rochester) in June 2016 to go through the Executive Health Program. As a new patient, they did a CT on my internal organs and found a nodule in my left lung (upper lobe). I had another CT done of it in December 2016 with no change. Last month I returned to Mayo and the CT show that the nodule had grown and changed. I live in Michigan but will be coming to Mayo Rochester in two weeks for minimally invasive surgery to remove the growth. I am hopefully ‘one of the lucky ones’ whose cancer was caught early and will be very treatable. I had breast cancer (the right breast) 16 years ago and had chemo and radiation then. I am wondering how painful/uncomfortable one is after this surgery – is it breathing that hurts? raising the arm? what???

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@wallyk Oh
she does Wally. She has a video on YOUTUBE, and not sure if on Ted Talks. Have
to ask her. Linda is a big time advocate.  – Terri M.
 

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