Living with lung cancer - Introduce yourself & come say hi

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.

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

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)

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?

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

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 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

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