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Profile picture for Colleen Young, Connect Director
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.

Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 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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<br><br><br><br><br>Will look forward to seeing the exercises. 'Bronchiecstasis News Today' has <br>some great breathing exercise videos as well. They were diff from any I had seen <br>before. I saved them to a file.<br> <br><br>

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 6, 2017
In reply to @shortshot80 "Hello, it has been awhile since I've been here, (other health problems) but getting better. I..." + (show)
Profile picture for shortshot80 @shortshot80

Hello, it has been awhile since I've been here, (other health problems) but getting better. I was told I have two kinds of lung cancer one year ago, on Jan.,
22.2016. I have plain ole lung cancer in my right lung. I have Mesothelioma in my left lung. My husband worked in the plastering business, mixing all the plaster for the job. In each batch of plaster he mixed he put 3/4 coffee can of Asbestos in each batch. Sometimes 100 batches daily, from 1955 to 1983. All I did was wash his clothes. So not much to be done for me. I am 83 years old, have been depressed for the most part of the time. I have talked to my pastor, a doctor, been on here some. I seem to be tired all the time. My last cat scan showed very little growth, Praise God! But somehow I have now a third grade kidney disease. So have been dealing with that too.Have both doctor's appointments in April, along with my heart doc, checking on my pacemaker which needs to be replaced this year. Sept, Oct or so. Can't keep track. (shortshot80)

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Nancy @shortshot80,
Here are some discussion you may wish to follow and take part in. Your questions are welcome.

- Stage 3 CKD http://mayocl.in/2kvZpbb
- Diminished kidney function http://mayocl.in/2lcdf3N
See more in the Kidney & Bladder group http://mayocl.in/2lPA3SG

- Pacemaker recipients http://mayocl.in/2lVDZSN
See more in the Heart & Blood Health group http://mayocl.in/1XWwPwo

Please let me know if you're looking for something specific.
Colleen

REPLY
Profile picture for shortshot80
shortshot80 | @shortshot80 | Mar 6, 2017
In reply to @shortshot80 "Hello, it has been awhile since I've been here, (other health problems) but getting better. I..." + (show)
Profile picture for shortshot80 @shortshot80

Hello, it has been awhile since I've been here, (other health problems) but getting better. I was told I have two kinds of lung cancer one year ago, on Jan.,
22.2016. I have plain ole lung cancer in my right lung. I have Mesothelioma in my left lung. My husband worked in the plastering business, mixing all the plaster for the job. In each batch of plaster he mixed he put 3/4 coffee can of Asbestos in each batch. Sometimes 100 batches daily, from 1955 to 1983. All I did was wash his clothes. So not much to be done for me. I am 83 years old, have been depressed for the most part of the time. I have talked to my pastor, a doctor, been on here some. I seem to be tired all the time. My last cat scan showed very little growth, Praise God! But somehow I have now a third grade kidney disease. So have been dealing with that too.Have both doctor's appointments in April, along with my heart doc, checking on my pacemaker which needs to be replaced this year. Sept, Oct or so. Can't keep track. (shortshot80)

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c
olleenyoung.
Yes, I would be interested in seeing what other people are doing with stage three Kidney disease. (
Shortshot80) Thanks Colleen@

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1 reply
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 5, 2017
In reply to @shortshot80 "Hello, it has been awhile since I've been here, (other health problems) but getting better. I..." + (show)
Profile picture for shortshot80 @shortshot80

Hello, it has been awhile since I've been here, (other health problems) but getting better. I was told I have two kinds of lung cancer one year ago, on Jan.,
22.2016. I have plain ole lung cancer in my right lung. I have Mesothelioma in my left lung. My husband worked in the plastering business, mixing all the plaster for the job. In each batch of plaster he mixed he put 3/4 coffee can of Asbestos in each batch. Sometimes 100 batches daily, from 1955 to 1983. All I did was wash his clothes. So not much to be done for me. I am 83 years old, have been depressed for the most part of the time. I have talked to my pastor, a doctor, been on here some. I seem to be tired all the time. My last cat scan showed very little growth, Praise God! But somehow I have now a third grade kidney disease. So have been dealing with that too.Have both doctor's appointments in April, along with my heart doc, checking on my pacemaker which needs to be replaced this year. Sept, Oct or so. Can't keep track. (shortshot80)

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<br><br><br><br><br>Hi Nancy. Wow, I am envious of your years out there fishing! That is one of <br>my passions. Plus, you live in a BEAUTIFUL part of the country. That asbestos is <br>some evil stuff. So sorry you two got affected by it. Please let us know how <br>your scans go. -Terri M.<br> <br><br>

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Profile picture for Linda
Linda | @llwortman | Mar 5, 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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My husband and I commend you both! You have obviously done your home work. We would be willing to fly (in our DL passes) to speak to your community.
My passion is to raise awareness about lung cancer, lung health and pulmonary research so Lungs & Lives can be saved.
We are hopefully starting a Longatudinal Healthy Lungs rRsearch Study in with Mayo Clinic Dr Bruce Johnson & The Healthy Human Research Lab.
One thing this lung cancer journey has taught me is researchers desperately need research funds. This is why my husband Jerry and I co-founded WortmanLungCancerFoundation.com & Running Lungs Walk/Run events two years ago. We are a non profit and have raised $25,000.00 for Mayo Clinic lung research & researchers.
Your thoughts?
Thank you for caring about others and sharing the needs of your community.
Kindest regards,
Linda

REPLY
Profile picture for All_in_1963
All_in_1963 | @burrkay | Mar 5, 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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Hi Linda-
Frankly I'm not sure what I have in mind, other than to raise awareness levels in our community. Too many times do we experience discovery of a newly diagnosed lung cancer victim who is stage 4 with no hope other than chemo. Too many times we hear of a newly diagnosed stage 4 lung cancer victim, who had been seeing her local doctor who was treating her for pneumonias, or undetermined pulmonary conditions.
Our community is an active retirement community with approximately 2500 folks, two golf courses, a beautiful lake, hiking trails, etc. Truely, the closest thing to paradise that we have found. Yet, tragedy strikes way too often with folks in their sixties and seventies all of a sudden scucomming to lung cancer!
Maybe we need to broaden the discussion to pulmonary disorders including lung cancer...don't know.
Maybe we need to enlist my wife's local oncologist or possibly a Mayo representative...don't know.
Suggestions?

REPLY
Profile picture for shortshot80
shortshot80 | @shortshot80 | Mar 5, 2017
In reply to @shortshot80 "Hello, it has been awhile since I've been here, (other health problems) but getting better. I..." + (show)
Profile picture for shortshot80 @shortshot80

Hello, it has been awhile since I've been here, (other health problems) but getting better. I was told I have two kinds of lung cancer one year ago, on Jan.,
22.2016. I have plain ole lung cancer in my right lung. I have Mesothelioma in my left lung. My husband worked in the plastering business, mixing all the plaster for the job. In each batch of plaster he mixed he put 3/4 coffee can of Asbestos in each batch. Sometimes 100 batches daily, from 1955 to 1983. All I did was wash his clothes. So not much to be done for me. I am 83 years old, have been depressed for the most part of the time. I have talked to my pastor, a doctor, been on here some. I seem to be tired all the time. My last cat scan showed very little growth, Praise God! But somehow I have now a third grade kidney disease. So have been dealing with that too.Have both doctor's appointments in April, along with my heart doc, checking on my pacemaker which needs to be replaced this year. Sept, Oct or so. Can't keep track. (shortshot80)

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Colleenyoung.....Yes, thanks. Might help to know what to expect. Thank you. (shortshot80 Nancy

REPLY
Profile picture for shortshot80
shortshot80 | @shortshot80 | Mar 5, 2017
In reply to @shortshot80 "Hello, it has been awhile since I've been here, (other health problems) but getting better. I..." + (show)
Profile picture for shortshot80 @shortshot80

Hello, it has been awhile since I've been here, (other health problems) but getting better. I was told I have two kinds of lung cancer one year ago, on Jan.,
22.2016. I have plain ole lung cancer in my right lung. I have Mesothelioma in my left lung. My husband worked in the plastering business, mixing all the plaster for the job. In each batch of plaster he mixed he put 3/4 coffee can of Asbestos in each batch. Sometimes 100 batches daily, from 1955 to 1983. All I did was wash his clothes. So not much to be done for me. I am 83 years old, have been depressed for the most part of the time. I have talked to my pastor, a doctor, been on here some. I seem to be tired all the time. My last cat scan showed very little growth, Praise God! But somehow I have now a third grade kidney disease. So have been dealing with that too.Have both doctor's appointments in April, along with my heart doc, checking on my pacemaker which needs to be replaced this year. Sept, Oct or so. Can't keep track. (shortshot80)

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Windwalker (: what a wonderful "handle"! My church is mostly my support. zzi. I enjoy my Sunday church. I was also gong to Bible study, but I get awful tired. I have been married 66 years. My husband has his own health problems. He has a permanent foly, and has asbestosis. I am in somewhat better shape than hie is, but not much. Doing some kidney things too. I have third stage kidney disease.
Going to have a cat scan in couple weeks, and also my lungs cat scan. Our oldest son lives with us and does the driving for us. Me... I get up every day feeling good or not and get dressed, fix some kind of breakfast for us. Keep thinking I will get my book done, but don'seem to get it started. Been thinking of this for at least 40 years. I live on the oregon coast in Pacific Citiy. This is a small fishing town. Used to help myhubby commercial fish in a Dory. It is a 22 foot flat bottom boat that we used to slide off a tilting trailer into the ocean. I was one of five ladies that did this in 1971. I enjoyed the fishing, boat ride too in the ocean.We fished from 1971 to 1995. Even tho I did most of the cleaning of the fish, I had fun. We (both) had jobs in Portland, so come Friday we would drive down about 80 miles, and fish for the weekend (weather permitting) go back and start the week again. If you are interested to see a Dory boat, Look up "Dory Boats" "Pacific City Dorymen" I was one of five women to do this, we were somewhat the start of more women to go fishing. More later. 'shortshot80..(Nany)

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 5, 2017
In reply to @shortshot80 "Hello, it has been awhile since I've been here, (other health problems) but getting better. I..." + (show)
Profile picture for shortshot80 @shortshot80

Hello, it has been awhile since I've been here, (other health problems) but getting better. I was told I have two kinds of lung cancer one year ago, on Jan.,
22.2016. I have plain ole lung cancer in my right lung. I have Mesothelioma in my left lung. My husband worked in the plastering business, mixing all the plaster for the job. In each batch of plaster he mixed he put 3/4 coffee can of Asbestos in each batch. Sometimes 100 batches daily, from 1955 to 1983. All I did was wash his clothes. So not much to be done for me. I am 83 years old, have been depressed for the most part of the time. I have talked to my pastor, a doctor, been on here some. I seem to be tired all the time. My last cat scan showed very little growth, Praise God! But somehow I have now a third grade kidney disease. So have been dealing with that too.Have both doctor's appointments in April, along with my heart doc, checking on my pacemaker which needs to be replaced this year. Sept, Oct or so. Can't keep track. (shortshot80)

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Thamks for taking the time to update us @shortshot especially when you have multiple health concerns to contend with.

We have several members on Connect talking about stage 3 kidney disease as well as people managing life with a pacemaker. Let me know if you'd like to be connected to those discussions.

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 5, 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.

Jump to this post

That's a superb list of questions for the oncologist tomorrow @burrkay. I cant think of anything to add except perhaps: what are the next steps?
I look forward to hearing how the appointment goes.

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