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?

@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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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

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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 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

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@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

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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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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.

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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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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!

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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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You are in an amazing place with a brilliant team! I truly am inspired reading your journey together! What a great team you are! Bless you!
All my best
Linda

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@llwortman

@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

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Awesome!!! Your attitude will create the next great chapter in your life. Wow great story thank you! Life is a gift, and we have a choice to treat it that way. Loved your post. : )

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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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Colleen, Just so you know, I immediately went to my lab results and found no mention of HER2.  All the other factors were tested and I am negative.  But I am bringing this information from burrkay with me and plan to inquire about it.  High priority on my Question List.Thank you for your inquiry re: burrkays info.  I appreciate it and am grateful for people like burrkay to read and pass on any info or experience they may have had.  I will gladly let you know the results of the visit and the Drs. response.  Thank you again.bestcare

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Would like to view some of the videos on this topic but I need some text as well. Are there any with text available at the present time?

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Dear liv:
MayoClinic has some Lung cancer interviews with visuals that have been helpful for me.
Dr Stephen Cassivi -Thorasic Surgeon, and
Dr David Midthun -Pulmonologist &
Dr Ping Yang – Lung Cancer Research…who also wrote a brilliant 19 page research paper that was posted Feb 2016.
We are blessed th have such brilliant and dedicated and compassionate human beings doing this amazing work!
Let me know if this was helpful? Bless you! Glad you decided to CONNECT!
linda

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All good here, i have been trying to start walking again…not long distances but at least a few blocks…I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right……Think i am the only one here from Wisconsin.?? Hope is well with you….

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@merilee

All good here, i have been trying to start walking again…not long distances but at least a few blocks…I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right……Think i am the only one here from Wisconsin.?? Hope is well with you….

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Keep walking girl! You are going thru perhaps some of the same  things I have…one day st a time, look up at the sky and the sun will shine on you. Keep putting one step in front of the other and breath deep! You are NOT alone. You deserve a BiG HuG! Let’s keep connected & never give up;-)linda 

Liked by merilee, danavs

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@merilee

All good here, i have been trying to start walking again…not long distances but at least a few blocks…I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right……Think i am the only one here from Wisconsin.?? Hope is well with you….

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Good for you @merilee for getting walking again. Length of distance is all relative. A long distance is one step further than yesterday and knowing when it is enough. I hope you’ll share the things that spring starts to show you as you go on your walks. Yes, spring is coming even to Wisconsin. 🙂

Being nervous about an upcoming test or scan is totally normal. Did you know that patients coined the phrase “scanxiety”? Have you ever heard anyone say that?

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@livethrufocus

Would like to view some of the videos on this topic but I need some text as well. Are there any with text available at the present time?

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Hi @livethrufocus. I’d like to add my welcome to the Lung Cancer group.
Here is a library of Mayo Clinic videos related to lung cancer. https://www.youtube.com/user/mayoclinic/search?query=lung+cancer Included are patient stories, videos from experts about screening, treatment, research and more.

i will gladly find articles for you as well. What aspect of lung cancer are you interested in? Do you have lung cancer?
We look forward to getting to know more about you.

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@merilee

All good here, i have been trying to start walking again…not long distances but at least a few blocks…I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right……Think i am the only one here from Wisconsin.?? Hope is well with you….

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“Scanxiety” is my new favorite word!
How can we get spell check to accept it?
You both deserve a hug!
linda

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