Living with lung cancer - Introduce yourself & come say hi

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?

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

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@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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@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

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@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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Will look forward to seeing the exercises. ‘Bronchiecstasis News Today’ has
some great breathing exercise videos as well. They were diff from any I had seen
before. I saved them to a file.
 

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@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! I watched your video. Thank you for taking the time to do that.
It was very inspiring. Also, I thought you were beautiful. You look fabulous!
hugs – Terri M.
 

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@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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You don’t live in Sun City in Bluffton, S.C. by any chance?
 

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@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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Hello Teri M: Thank you for taking time to reply after watching Beating The Odds TED x Talk. I’m always delighted to inspire people and give hope. Breathing exercises, along with attitude, is so very important. Dr Amit Sood has written several books about acceptance, attitude and breathing. Have you heard about the book “Stress Free Living” or “Happiness” by Dr Amit Sood? Both make me feel better and keep me feeling fab on the inside. If you read either book let me know what you think. Thanks again for your kind words. You just inspired me!

You deserve a big cyber hug.
Linda

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@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 Terri M :
No, but we are retired & love to travel. Why do you ask?
We live in Big Sky Montana Near Yellowstone National Park. We have Moose, Elk, Eagle travel past our home on the Gallatin River.

We started a non profit and sponsor FunWalk/Runs to raise lung health, lung cancer & pulmonary research funds for Researchers at Mayo Clinic.

Have you felt any of the lung stigma? I have, even though I never smoked. Did you know researchers desperately need research funds?

So that is why I presented my TED x Talk.
I want to give HOPE to save Lives & Lungs & change the face of lung disease!!

I have been extremely impressed with the many Mayo Clinic Teams that work 24/7 (like ColleenYoung- I don’t think she ever sleeps!)…what do you think?

I want to give back. Mayo Clinic saved my life, and taught me how to breath like never before…How do I ever pay them back? We have Running Lungs walk/run events in 4 states MN, MT, AZ & hopefully FL this year.

Long answer driven with lung health passion. Hope you don’t mind?

Hugs
Linda

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@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:
Hope you are having a good day!
Cyber hug,
Linda

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@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 Burrkay:
Thinking of you both. Sending healing thoughts! And cyber hugs, too.
Linda

REPLY
@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. Of course I do not mind your not so long reply. I had asked about
where you lived because I thought I had read that you lived in a retirement
community in S.C.; may have you confused with another. Wow, I am sure it is
exquisitely beautiful where you live! I have always wanted to travel to that
part of the country and we may this summer. I feel the same way about the Mayo
Clinic. I believe I’d be pretty far gone by now if not for them. I do not fear
an early a death now, because I have lots of confidence that they can help keep
me going. They and I are a good team. I commend you for all of the advocacy work
that you do. I hope to regain more energy to be able to do the same. Terri
M.
 

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@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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Thank you Linda..You have a great day also..Hugs.  Merilee

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@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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Yes, heard of these books on this support group thread. Will be ordering
them. Thankfully, I wake up every morning cheerful and do productive things. I
am grateful that at this point, that I am not suffering in any way. (like I had
for yrs in the past) Just wish I had more energy. It wouldn’t hurt to read the
books anyway for extra bolstering. I hope you are having a fabulous
day!   -Terri M.
 

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@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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Wanted to add one more comment concerning the ‘Stress Free’ book. I have
successfully tailored my life to be stress free. I did this by living happily
for years below my means, eliminating people from my life that were not good for
my emotional well being, and handle issues as they arise as to not get a pile up
of worries. When battling a serious illness, wellness needs to be your primary
focus. This book probably has physiological ideas on how to decompress from
stress. Exercises, meditation, feeling grateful, and other ways to decompress.
Guess I wanted to throw in that if you can manage the external things that can
cause anxiety, it makes it easier to do the internal workings.
 

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@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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thank you Colleen for prodding me to tune in again. burrkay has hit on something that may be of great importance to me. Ive had a mutation panel for EGFR, KRAS,BRAF, ERBB2. NO mention of HER2. Thing is my Mother died of Breast cancer, double mastectomy and my sister, 10 yrs. younger, had the same Breast Ca. and a double mast. She survived and is doing very well. Her only C/O are the end results of the radiation and chemo. I did not qualify for any trial, because I never had any treatment so far over the 4 or 5 yrs. with this dis. Now there is one trial out there for people like ;me and I’m hoping to get on it, they feel I am a good candidate.
I have one more appt. for another opinion with an Immunologist and hope he will have some suggestion for therapy. Sometimes I’m so depressed, but I believe God has a plan for me and will get me through it if I work at it. Sometimes you just dont’ know what to do next nor feel like doing anything because there is just nothing being done. I’m delighted to bring this information to the Immunologist. Hopefully there will be something to come of it. Thank you so much for your taking the trouble to write all this for your wife. BESTCARE.

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