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.

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

REPLY
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)
@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?v=o3np0vU7FGg

REPLY
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)
@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
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)
@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?

REPLY
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)
@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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Great effort! Thank you for your update. I do respect and understand. It can be so difficult to move the lung(s). It took me three years to move like a human... as a matter of fact, what really motivated me was the conversation with my life insurance company when I was told,"your policy has been cancelled (they had cashed my check) and then they said, "according to statics, I should be dead"! That made me so mad, I got up and got moving!
I was never a runner before lung cancer.

If you want a few laughs, perhaps you can both watch my (14 min) TED x Ideas Under The Big SkyTalk? It just came out 2 weeks ago on UTube,LindaWortman
Will you let me know what you think?
Thanks again for sharing & Never give up!
Linda

REPLY
All_in_1963 | @burrkay | Mar 4, 2017
In reply to @merilee "Good idea Its been awhile since I've been on here at least posting on here I..." + (show)
@merilee

Good idea Its been awhile since I've been on here at least posting on here I read it from time to time . Diagnosed adenocarcinoma non small cell stage 2A 2015, I had surgery resection and chemo following . Months later lymph nodes in the mid chest were enlarged due to cancer . The doctor said she believed that that it was there earlier but never showed on any scans they called it a local reoccurrence . I then had radiation x30 and chemo . My last scan was in January and everything was stable some nodules are being watched but are very small , too small to biopsy . I constantly worry ..especially right before scan which is coming up mid April I'm just keeping my fingers crossed and praying that all is good . The doctor said this was caught fairly early which I believe is a good thing . They did mutation testing and from what I understand all checked were negative .. i don't know if that's good or bad but that's all I know . It seems your life kind of stops once you're diagnosed and everything is put on hold at least mine has.. I lived with my son through the treatment and I'm thinking about getting my own place again and possibly even working part-time ,I can no longer hide behind a diagnosis .Online support groups have helped me in many ways . But I am looking for a face-to-face support group also . Will keep reading and try to post more often. I'm
from Milwaukee Wisconsin... . If anyone else is .but if so would like to hear from you. Hope all are doing well .....Thanks

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Hi Merilee-
I read with interest your post regarding the mutation study at the time of your surgery in 2015.
My wife had a bilobectomy of her right lung in 2015, after being diagnosed with stage IIIa NSCLC. Mayo-Rochesrer did a mutation study at that time, which was negative for the EFGR mutation as well.
After chemo, a subsequent recurrence, and no response to nibe rounds of Opdivo, last fall, Mayo-Jacksonville ordered a molecular study. From that, it was determined that my wife's lung cancer was a HER 2 mutation...common in breast cancer, but not so common in lung cancer patients.
They have now been treating her for the HER2 mutation.
You might want to discuss the the possibility of ordering a molecular study for you.

REPLY
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)
@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 Linda!
I have given her a copy of the book.
I have encouraged her to get outside and walk, etc., but so far not much luck. She is still quite active with house work, card clubs, etc., which helps. However, she has never been much for walking...not obese, etc., but she is just not a walker.
Her breathing is fine...amazing as it may sound.
I have shared your "paced breathing" approach with her. Her response was "she did not have a recurrence of her cancer"...I will keep trying to encourage it however. I am a believer in exercise... I golf 2-3 times every week!
My wife used to golf, but the tumor lumps in her muscular system are keeping her from doing that. We live in a retirement community, and lots of activity including golf is available to keep us going!
Thanks for sharing...

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