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?

@colleenyoung

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.

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Thank you @colleenyoung and @llwortman for the welcome. I still believe fate is what brought me to work at Mayo Clinic – and to a group that understands this wicked disease.

My primary care provider had access to me everyday and could see the progression of illness prior to diagnosis and was a very strong advocate for me especially when I had decided it was all in my head. I have not taken on dealing with my pain yet, only because we have been trying to find the right combination of meds to allow me to eat and drink without the firey dragon rising from my throat.

Just today, after 5 days of everything running through me, my oncologist determined it was time to take a break from the Tarceva. I will see him next week, and two weeks later, and then we will decide if I go back on at a lower dose, or try something else. The day he tells me we are switching to chemo is the day I fear most, because he warned me it would be the last step.

You asked about side effects. I literally have experienced every single side effect from Tarceva. Fatigue, nausea, diarrhea, facial sores (looks like acne), scalp sores (cut 8″ of hair off just to manage the scabs), acid reflux, mouth sores, constipation, headache, loss of appetite, loss of weight, extreme sun sensitivity (I get sunburned in the car if I am on the sunny side of the street). Everything I eat and drink has a delicious acidic undertone.

I am going to request time with the social worker at Andreas Cancer Center as I know her personally, and start the process of getting my kids acclimated to therapy before my daughter enters her sophomore year at MSU, and my son jumps into his Freshman year in high school.

I work for Mayo, and have Mayo insurance, but was denied the PET Scan we scheduled, because it wasn’t deemed “medically necessary”. I assume we will just do a good ol’CT with contrast and hope it is enough to monitor changes, remembering that it took 5 months and 27 radiologic exams, and two surgeries to diagnose me. By the time they found it it was in the lining of my stomach/liver and in my brain.

One day I hope to have the strength to advocate for our patients, as one myself, to stop the denials that halt progress on healing.

Thank you again for the warm welcome!!

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@colleenyoung

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.

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@shortshot80 thank you for the welcome! Sounds like you are a pro at draining! I will admit, I was a whimp all three times, including the time they left the chest tube in after the thoracoscopy and wedge resection. We discovered at that time that I was allergic to adhesives, so imagine holding a chest tube in, and keeping it from leaking, when you cannot use tape! Even the upper torso wrap would get soaked. Disgusting! I’m sure we could all tell war stories!

Keep strong!!! Lori

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@colleenyoung

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.

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@lorinusbaum Hi Lori. I am so sorry you have to go through all that you do. I
have a friend who been suffering with all of those symptoms as well. He has lung
cancer. My heart goes out to you. Stay strong. HUGS – Terri M.
 

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@colleenyoung

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.

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@lorinusbaum Lung cancer patients and patients in general are lucky to have an advocate like you in their court! Thank you.

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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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Here is the article to which Linda refers.

An Unexpected New Lung Function Has Been Found – They Make Blood https://www.sciencealert.com/an-unexpected-new-lung-function-has-been-discovered-and-it-could-disrupt-decades-of-scientific-thought

cc: @llwortman @windwalker

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Hi @wallyk
I’m wondering if you’ve had your surgery and how you’re doing. Look forward to getting an update from you.

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Hi @lorinusbaum – I’m thinking about you today. How are you doing?

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@colleenyoung

Hi @wallyk
I’m wondering if you’ve had your surgery and how you’re doing. Look forward to getting an update from you.

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Thanks, Colleen for checking up on me. My surgery was successful. The lung partially collapsed and I developed ‘rice krispie’ skin so I ended up being in the hospital 6 days instead of 2. And, I have some nerve damage. But, in the scheme of life that is very minor! I’m feeling well, just still short of stamina. I’ll have my first follow up CT in December, Mayo doctors, hospital staff all take great care of me.

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@colleenyoung

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.

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Hello
My father has been diagnosed with Idiopathic Pulmonary fibrosis. How is this different from lung cancer? Thanks.

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@colleenyoung

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.

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Hi @scrapper, welcome to Connect.
“Pulmonary fibrosis is a lung disease that occurs when lung tissue becomes damaged and scarred. This thickened, stiff tissue makes it more difficult for your lungs to work properly. As pulmonary fibrosis worsens, you become progressively more short of breath.” Pulmonary fibrosis with no known cause is called idiopathic pulmonary fibrosis. You can read more here https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/symptoms-causes/syc-20353690

I recommend that you follow the Lung Health group and take part in the discussion about IPF
– Pulmonary Fibrosis https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/

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@colleenyoung

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.

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Colleen: Great information !
Thank you
linda

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I’m Lindsay Raymond and I found out on 2/8/18 that I have advanced lung cancer.

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I am so sorry that you received this news. What will be your treatment?

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Lindsay keep the faith!
What type do u have? Small Cell or Non Small cell?
My wife was diagnosed with non small cell lung cancer in April, 2015…stage 3a…dr removed 2/3 of her right lung in May…re-staged her to stage 4 in July 2016…she had a genomics study done in the fall of 2016 and from that study, Mayo determined she had a breast cancer mutation in the lungs.
She has been on a clinical trial immunotherapy since Dec, 2016 and today she has a great quality of life. Infusions every three weeks, but very little side effects!
Be sure to ask the dr about a genomics study!
Best of luck!

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Hello Lindsay:
Welcome to Mayo Connect. I have met many amazing care givers and survivors in this wonderful and supportative community.
I was diagnosed with non small cell lung cancer 10 years ago when there was little printed information and little hope for lung cancer patients. Now, there are over 1100 therapies. With proper diagnosis and proper treatment there is hope!
My quality of life was greatly improved after my left lung VATS surgery at Mayo Clinic along with a Paced Breathing Research Study, lead by Dr Amit Sood.
The research at Mayo Clnic is remarkable and the support is the best in the world as well. So let’s stay Connected, ok?
A warm welcome,
linda

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