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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 7, 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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<br><br><br><br><br>Hi Linda. Of course I do not mind your not so long reply. I had asked about <br>where you lived because I thought I had read that you lived in a retirement <br>community in S.C.; may have you confused with another. Wow, I am sure it is <br>exquisitely beautiful where you live! I have always wanted to travel to that <br>part of the country and we may this summer. I feel the same way about the Mayo <br>Clinic. I believe I'd be pretty far gone by now if not for them. I do not fear <br>an early a death now, because I have lots of confidence that they can help keep <br>me going. They and I are a good team. I commend you for all of the advocacy work <br>that you do. I hope to regain more energy to be able to do the same. Terri <br>M.<br> <br><br>

REPLY
merilee | @merilee | Mar 7, 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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Thank you Linda..You have a great day also..Hugs.  Merilee<br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 7, 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

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

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 7, 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

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

REPLY
bestcare | @bestcare | Mar 7, 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

Jump to this post

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.

REPLY
All_in_1963 | @burrkay | Mar 7, 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

Thank you Linda for your kind words. We try to stay in tune with not only our situation, but the other victims of this horrible disease.I have asked out community Cancer Patient Advocate to look at your TEDx video, and advise me as to the possibility of you and your husband presenting your story to the community. He has previously organized talks from our Cancer Center, but none as specific as yours...mostly the discussions have been about the services and technologies available locally.Just so you are aware, our community is somewhat remote. We are located 80 miles south from Greenville Spartanburg airport near McCormick, SC.What timeframe would you have in mind?Would you bring the Mayo representative with you?Would you be willing to co share with our local Cancer Center in Greenwood? Our local oncologist has been very cooperative with our Mayo-Jacksonville oncology team.Thanks again Linda for all you do for the lung cancer victims!I love your tag line "help us blow lung cancer away"!!!Bill

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 7, 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

Hi Burrkay and Linda,
This is thrilling to see that you guys are making this happen. Bill, you'll notice I removed your personal contact information from the public space and connected you and Linda by private message. Sharing your email and phone number is safer by private message.
Good luck with your arrangements. Be sure to record it and share it!
Colleen

REPLY
Linda | @llwortman | Mar 7, 2017

@bestcare
Welcome to connect. Thank you for sharing your story with such openness. I am a 9 year lung cancer survivor. I have an understanding about what you may feel. You are not alone. I hope by sharing I can help you find a way to rise above the fear.May I share a little about my story ?
Jan 2008most of my left lung and a 3cm tumor was removed just days after Mayo Clinic properly diagnosed my shoulder pain, annoying cough, night sweats...I have a feeling you understand?

I had these symptoms for at least two years, but my local docs found nothing. That was in the year 2008, when most everyone thought, Ih you got lung cancer? You smoked! Well I never smoked.
Now I can continue to "thank Mayo Clinic Teams", at all of my follow up apts for saving my life!...I am equally, deeply grateful to the Lung Cancer researchers who answered my question, Why did I get lung cancer?"
About three years ago I jumped at the chance to have my 3cm tumor tested. I had a mutated EGFR gene! I did not pass lung cancer to my children & I did not get this gene from my parents! Whew!
So I cannot wait for researchers to find what's behind the EGFR and other mutation, and one day find a cure.

Because of this cancer roller coaster,I have learned the importance of rising above the fear that may bring depression. So I go for walks, even in the rain & cold! I tell my body to relax when I breath deep! And I continue to blow cancer away! I've even found relief with complimentary medicine.
Now we have Connect! Great to meet you.
Linda
I

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 7, 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

Jump to this post

Welcome back @bestcare.
I hope the information from @burrkay about HER2 proves to be helpful for you. In preparation for you appointment with the immunologist, I found this article in Medscape called "HER2-Targeted Drugs Useful in Some Lung Cancer Patients" http://www.medscape.com/viewarticle/803000. It was published in 2013, so there may be more up-to-date information available to your doctor.

I can understand that you struggle with depression in the face of lung cancer. In this, you are not alone. I encourage you to start a new discussion about this. Let's talk about it.

REPLY
All_in_1963 | @burrkay | Mar 7, 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

Jump to this post

Please understand our determination that my wife had the HER2 mutation was the result of a molecular study ordeeed by our Mayo oncologist because she was not responding to the standard "bill of fare" for lung cancer patients.
The Mayo folks did the standard mutation study for EGFR, etc from the biopsies from surgeory. However the Mayo- Jacksonville oncologist later suggested that we needed a larger slide to do the study. That required a needle biopsy, then 4-6 weeks of computer analysis of her genomics.
My point is he prepared for more tests.
Best of luck!

REPLY
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