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Moderator

Living with lung cancer - Introduce yourself & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Mar 2, 2017

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?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

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All_in_1963 | @burrkay | Feb 26, 2018

Lindsay keep the faith!
What type do u have? Small Cell or Non Small cell?
My wife was diagnosed with non small cell lung cancer in April, 2015...stage 3a...dr removed 2/3 of her right lung in May...re-staged her to stage 4 in July 2016...she had a genomics study done in the fall of 2016 and from that study, Mayo determined she had a breast cancer mutation in the lungs.
She has been on a clinical trial immunotherapy since Dec, 2016 and today she has a great quality of life. Infusions every three weeks, but very little side effects!
Be sure to ask the dr about a genomics study!
Best of luck!

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3 replies
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Merry, Alumni Mentor | @merpreb | Feb 26, 2018

I am so sorry that you received this news. What will be your treatment?

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1 reply
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lindsayraymond | @lindsayraymond | Feb 26, 2018

I’m Lindsay Raymond and I found out on 2/8/18 that I have advanced lung cancer.

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Linda | @llwortman | Nov 7, 2017
In reply to @colleenyoung "Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major..." + (show)
Profile picture for Colleen Young, Connect Director @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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Colleen: Great information !
Thank you
linda

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 7, 2017
In reply to @colleenyoung "Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major..." + (show)
Profile picture for Colleen Young, Connect Director @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 @scrapper, welcome to Connect.
"Pulmonary fibrosis is a lung disease that occurs when lung tissue becomes damaged and scarred. This thickened, stiff tissue makes it more difficult for your lungs to work properly. As pulmonary fibrosis worsens, you become progressively more short of breath." Pulmonary fibrosis with no known cause is called idiopathic pulmonary fibrosis. You can read more here https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/symptoms-causes/syc-20353690

I recommend that you follow the Lung Health group and take part in the discussion about IPF
- Pulmonary Fibrosis https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/

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Profile picture for Scrapper
Scrapper | @scrapper | Nov 7, 2017
In reply to @colleenyoung "Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major..." + (show)
Profile picture for Colleen Young, Connect Director @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.

Jump to this post

Hello
My father has been diagnosed with Idiopathic Pulmonary fibrosis. How is this different from lung cancer? Thanks.

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Wally | @wallyk | Oct 24, 2017
In reply to @colleenyoung "Hi @wallyk I'm wondering if you've had your surgery and how you're doing. Look forward to..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @wallyk
I'm wondering if you've had your surgery and how you're doing. Look forward to getting an update from you.

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Thanks, Colleen for checking up on me. My surgery was successful. The lung partially collapsed and I developed ‘rice krispie’ skin so I ended up being in the hospital 6 days instead of 2. And, I have some nerve damage. But, in the scheme of life that is very minor! I’m feeling well, just still short of stamina. I’ll have my first follow up CT in December, Mayo doctors, hospital staff all take great care of me.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 23, 2017

Hi @lorinusbaum - I'm thinking about you today. How are you doing?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 23, 2017

Hi @wallyk
I'm wondering if you've had your surgery and how you're doing. Look forward to getting an update from you.

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1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 6, 2017
In reply to @burrkay "It's been awhile! Thank you Colleen for moderating and Linda for participating as an amazing survivor..." + (show)
Profile picture for All_in_1963 @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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Here is the article to which Linda refers.

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

cc: @llwortman @windwalker

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