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Living with lung cancer - Introduce yourself & come say hi

Lung Cancer | Last Active: Sep 25 12:58pm | Replies (1044)

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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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Replies to "It's been awhile! Thank you Colleen for moderating and Linda for participating as an amazing survivor..."

<br><br><br><br><br>You don't live in Sun City in Bluffton, S.C. by any chance?<br> <br><br>

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

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

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

<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>

<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>

<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>

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

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

Welcome Back to Connect: It has been too long. But so glad to hear you are keeping busy.
If I remember correctly we have the same Thorasic Dr. at Mayo Rochester ? Have you
contacted him? I have never had to wait for follow up blood work, CT scan report...hummm
And remember the wonderful Jacksonville Mayo Dr Mathew Thomas in Thorasic and
Dr Margaret Johnson in Pulmonology, I am quiet sure they will remember you both.
I will be thinking of you. Let's stay connected, ok?
Linda