1. < Lung Cancer
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.

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)
@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

Colleen: Great information !
Thank you
linda

REPLY
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)
@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

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/

REPLY
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)
@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.

REPLY
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)
@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.

Jump to this post

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.

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

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

REPLY
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.

REPLY
1 reply
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)
@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.

Jump to this post

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

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 6, 2017
In reply to @colleenyoung "Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major..." + (show)
@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

@lorinusbaum Lung cancer patients and patients in general are lucky to have an advocate like you in their court! Thank you.

REPLY
Terri Martin, Volunteer Mentor | @windwalker | Jul 5, 2017
In reply to @colleenyoung "Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major..." + (show)
@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

@lorinusbaum Hi Lori. I am so sorry you have to go through all that you do. I
have a friend who been suffering with all of those symptoms as well. He has lung
cancer. My heart goes out to you. Stay strong. HUGS - Terri M.
 

REPLY
lbaum | @lorinusbaum | Jul 5, 2017
In reply to @colleenyoung "Hi @llwortman @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major..." + (show)
@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

@shortshot80 thank you for the welcome! Sounds like you are a pro at draining! I will admit, I was a whimp all three times, including the time they left the chest tube in after the thoracoscopy and wedge resection. We discovered at that time that I was allergic to adhesives, so imagine holding a chest tube in, and keeping it from leaking, when you cannot use tape! Even the upper torso wrap would get soaked. Disgusting! I'm sure we could all tell war stories!

Keep strong!!! Lori

REPLY
View MoreView Less
Please sign in or register to post a reply.