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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.

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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Burrkay:You will both be in my thoughts !All my bestLinda 

REPLY
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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Dear burrkay:Thank you oir your kind words. I hear about lung tragedy too often. My journey with lung cancer has taught me that researchers everywhere...even at Mayo Clinic researchers desperately need research funding, to find the best ways to properly diagnose and properly treat lung cancer .My life's passion is to introduce people of all ages to their Lungs with more fun facts as well as lung health and cancer facts. I have seen amazing growth in research and treatment since my 2008 surgery, but mute needs to be done, would you agree?I would enjoy meeting you and talking with you more about possibly speaking in your community. What do you have in mind?Thanks so muchHugs for caringLinda 

REPLY
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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Colleen:
Thank you for posting this information. Additional app Improvements along with breathing games will be launched soon!
Hopefully we can encourage people to take time out by learning how breath deep! It has helped me sleep all night, walk & run, and climb higher. It just takes practice and time.
Hugs
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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Thanks Colleen
We have found the report on our chart on the web and are excited to know she is much improved!
The tumor has shrunk, etc.
Here our discussion items for the doctor tomorrow:

The report is encouraging, and we are cautiously optimistic. We do have the following concerns to discuss with you tomorrow:

- Where is the tumor/s located currently?
- Are there new tumors or new changes?
- Restaging - Am I still considered Stage IV?
- Have you ever gotten a lung cancer patient to "remission"??
- "Benign flow related enhancement in right lobe of the liver"? Does this need further study?
- How long can I stay on the infusions?
- Should I now consider a port?
- Would you please send an update with the latest scans to dr Menefee at Mayo?
- Any suggestions about exercise?
- Heart monitoring since that is one of the supposed side effects of the herceptin/perjeta doublet. How close must we be monitoring it and methodology?

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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We watched the video and found it quite informative. Thank you for all of your hard work!
We live in a retirement community in South Carolina and have lost numerous neighbors to lung cancer. Would you consider visiting and putting on your same or similar talk for our community?

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4, 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

Thanks for the additional information @burrkay. So grateful your oncologist persisted and found the molecular root cause. I'll be thinking about you and your wife on Monday. Please update us when you can.

REPLY
1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4, 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

Here's information about MyBreath app that Linda mentions in the TED talk.
http://www.breathresearch.com/mybreath-app/

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 4, 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

Here's the link to Linda's TEDxBigSky Ted talk.
- Beating the Odds: Climbing Mt. Kilimanjaro with One Lung https://www.youtube.com/watch

REPLY
Profile picture for Linda
Linda | @llwortman | Mar 4, 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

It's on my Ted talk...
Lw

REPLY
Profile picture for All_in_1963
All_in_1963 | @burrkay | Mar 4, 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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Thanks Linda-
We will look at the TED video...but first I must express my dismay over your life insurance having been cancelled! That is unreal! How can that be? Especially after you had paid your premium. Had you owned the policy long?

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