Share this:

Living with lung cancer - Introduce yourself & come say hi

Posted by @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 Mentor Linda (@llwortman) 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?

REPLY

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.

@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

What an amazing opportunity for lung cancer patients, lung patient survivors and loved ones to connect when dealing with this horrific disease.
I am a 10 year lung cancer survivor. I never smoked. I understand the pain, unfair blame & shame that comes with this disease! Yes, I have learned, through Mayo Clinic Researchers, that lung cancer is a disease! No one deserves additional or unnecessary battle(s) when fighting this battle. My husband stood by my hospital bed (post op.? after surgeons removed most of my left lung) and for five hours and said, "Breath, Breath, Breath!" It was the toughest thing I have ever done!

So let's connect and help each other live the best quality of life possible, ok?

I hope that by sharing my story and passion to save Lungs & Lives, we will be able to accept this disease and together help make memorable changes for Doctors, Researchers, Care Givers, Loved Ones and Ourselves!

I'm ready to blow lung cancer away, will you please help ?

Linda

@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

Thank you kicking off the introductions Linda!
Did you have any treatments after surgery?

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.

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)

@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

Good to hear from you Burrkay. I’m familiar with the HER2 mutation in breast cancer, but have just been reading about it in lung cancer. Great news to hear that your wife is tolerating the new treatment well. How often does she have the infusions?

@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)

Jump to this post

Hi Shortshot. I guess you are depressed! That was some scary news you got
last year. I hope you have a good support system in person. All of us on
this site with lung issues can relate to the lack of energy for sure, and
it does get us down. I never even got dressed today and spent most of it on the
couch. That is not like me, but some days are just that way. So, I got some good
tv viewing time in.  (I have multiple serious
health issues that are trying to do me in.) That is really wild that you
contracted the asbestos from laundering your husband’s clothing! I have
heard that families of shipbuilders would get it the same way.  Know that
we are here for you too. Big Hug to you Shortshot.
 

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

@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

Jump to this post

Merilee Hi;-)
I am so happy you are sharing your journey. I somewhat understand your feelings because I am a 9 year lung cancer survivor. 1/11/2008 most of my left lung removed with a3cm tumor. Non small cell adenocarcinoma early stage.
I had a nodule hanging out in my right lung lobe for several years! May I share what I did to conquer the Returning LC Fear?
I was blessed to have a husband who said,”You belong out side, let’s go!” Every day for at lest an hour we moved…out doors. At first I struggled to walk and breath as I took baby steps. I looked up at the sky and gave thanks ! The time outside and fresh air helped my lungs even when it was below zero!

One day…Mayo Oncology gave me the opportunity to be involved in Dr Amit Sood’s Paced Breathing Research Study! AmaZing!!!
This study with a workbook and a Paced Breathing app, I feel, helped calm my fears.
By taking time out “15 mins” a day or more and Connect my Body, Mind and Spirit
I told my body to calm, & my nervous system relax , as I breathed in and out, ever so slowly…While I envisioned the nodule disolving and the cancer staying away.

How many times are we given permission to face lung cancer? &Be happy while we go through this challenge? Especially when we discover Beating The Odds can be our biggest challenge? Yikes!!!

So Girlfriend, I want you on my team! Think of me holding your hand once a day; thinking with you as you blow cancer away with every deep breath you take ! This practice helps core and diaphragm;-) too.

Will you ‘please’ keep me posted?

Hugs
Linda

@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

I commend you on your great team support! My husband has provided my greatest support. He drug me out for walks
Saying “you belong outside” right after my the 2009 VATS surgery that removed most of my left lung and a 3 cm tumor!
I later learned walking helped my lungs rebuild and gave me more energy!!! Can you believe it?
Have you experimented with “Paced Breathing”? It really helped me. And continues to be my”go too” when I get LC nerves! Ha! It’s the min, body & spiritconnection while I blow cancer away
With Paced Breathing practice.
Have you read “Happiness” by Dr Amit Sood? I have a feeling you both would like this read. Let me know, ok? This practice really gave me permission live one day at a time, with gratefulness and HOPE ina whole new way;-)
Keep up the great teamwork! Give each other a big hug…everyday! I’m thinking of you both!
Hugs
Linda

@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

Hi Collen-
Yes the HER2 mutation in lung cancer patients is unusual- less than 1% have it!
Our Mayo oncologist in Jacksonville found it by ordering a molecular study last fall, after my wife had not responded to nine rounds of Opdivo therapy.
It took 6 weeks to get the report back, but well worth the efforts. Mayo-Rochester had done a mutation study on the tumor in 2015 when they did a bilobectomy. However, our Jacksonville Mayo oncologist still felt the molecular study would lead to a possible root cause! HE WAS RIGHT!
She gets her infusions every three weeks. She has had three infusions to date. If last Wednesday’s scans show progress, she will get a fourth herceptin/perjeta doublet next week.
We have an appointment on Monday, March 6th with our local oncologist here in South Carolina to get the scan results. Until then, prayers and hopefulness!

@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…

@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

Jump to this post

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.

@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

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

@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-
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?

Please login or register to post a reply.