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?

I have to admit, working for Mayo Clinic Health System, I signed up for Connect over a year ago, but never really did much with it. Here I am, 16 months later, finding myself seeking out others that share my story and understand. Friends and family can show love and support, but understanding comes from experience.

Last August I started physical therapy for pain in my right shoulder. As soon as my sessions were over, I was nauseated and some days, vomiting. After about 8 weeks over "working through it" and finding it to only get worse, I quit PT and started taking prescription strength Omeprozol. My symptoms improved so I went on with life as usual.

In December, hill preparing to celebrate my grams 100th birthday, I had immense pain, shortness of breath with short sharp breaths, and unable to eat. During the party I asked a cousin who was on the local ambulance to make a call to her crew and I snuck out to meet them at my grams house. I arrived at the hospital and was told they were certain it was a kidney stone. Because I was struggling to breathe, while waiting for urinalysis, the ER doctor had me do a Chest CT. The results showed the lining of my lung full of nodules, my lung was collapsed, and the fluid surrounding my lung was over 3L. I'm addition I had a rather large hall stone blocking the neck of my gallbladder. I was transferred by ambulance to Mankato, and spent the next 6 days trying to discover the cause.

I spent the next 5 months doing repeat scans to find out what was causing the nodules, and monitoring by a pulmonologist. In addition, in February I had a second gall attack and an emergency removal of my gallbladder. On May 2nd I had a thorocoscopy and wedge resection. On May 4th I was diagnosed with metastatic stage IV pulmonary adenocarcinoma EGFR positive. On May 16 I had a PET scan and Brain MRI, and discovered a cancerous lymph node in the lining that connects the liver and stomach, and tumors in my brain.

Tomorrow will be 2 months since D Day, and one month on Tarceva. Tarceva and I don't play in the sandbox well, so my oncologist is considering a lower dosage when I see him next week. We will do a repeat of my scans in August to monitor tumor reaction. If there is progression on brain tumors, I will have a gamma knife procedure. If there is progression of any other cancer, I will have another biopsy to reevaluate the receptors and determine next course of treatment.

At 46, with two kids and a husband I am not done seeing the world with, it's hard to hear I have 27-35 (-2) months to check items off of my bucket list. I am a realist, so I do t want sugar coating 🙂

Thank you for creating this community!

Lori

My goodness you don't mess around do you. I understand the lung falling and full of fluid. I had my left lung drained three times, the third in the hospital with surgery. Doc put two - two inch holes in my lift side and put a two inch four foot hose in my left lung and drained it for four days. Plastered my lung back in place with talcum powder and then told me that I had "Mesothelioma" in that lung, and plain old lung cancer in my right lung.This was January 2016. This last month I have had radiation on my right lung for a total of five sessions. You do't . I am 84 and too old for this stuff. I'm tired, doc's said radiation makes you tired. Well kiddo, you are in a great place. Take care.
Prayers for you. (shortshot820) Nancy

Dear Lori:
Thank you for reaching out to Connect. You are a brave woman, wife and mother to share your story. I am following you as a mentor who is a 9 year 6 month lung cancer (non small cell adenocarcinoma) survivor.
I was treated at Mayo Clinic Rochester. For two years I had a chocking cough and left shoulder pain that was later found to be the tumor. I thought I has SARS or TB...I was denied a chest X-ray because I looked good! I would learn local doctors just were not skilled to know it was lung cancer...the kicker is, I neVer smoked!
Research has developed so much. I too have the EGFR mutated gene. There is more hope now than ever before. I have met other stage IV who are living a god quality of life, it can be done!
I trust my Rochester Mayo Clinic doctors who have stayed by my side. When asked, do you want us to work with your local doctors ? I said, NO!
I believe that Mayo teams embraced me knowing I would travel the distance Not only miles
But also with my mind body thinking. So stay positive, ok?

I encourage you to watch Dr Amit Sood'sTED Talk. It was his Paced Breathing 2008 Research Study that allowed me to accept my lung cancer and then let it go. With his resiliency training, teaching me to be happy, each and every momemnt he give me permission through meditation and training, on how to take time 'for me' and my body to fight and heal. It is in part, why I believe that I am alive and living a great quality of life.
My loving husband took the lead
as a general fighting with me and said, "you belong outside, let's go"! He tied my shoes when I couldn't even bend over because of the pain.Breathing deeper and breathing through the cold outdoors seemed to help! No mater how afraid I was, I had to put one foot in front of the other and keep going from
The brink of life back to the shocking diagnosis.
So when I look up at the sky I give thanks. I have learned to give silent blessings to people whom pass by me on the street and to people I know. The out reach is healing.
We never know what's around the corner do we? So, I want to encourage you to fight, and you too, will check off things off that 'bucket list' like I have. Life's a journey and I know you are strong!
My dear Lori, let's stay connected! Reach out anytime ok? You deserve a great big cyber hug! You are not alone.
Linda

Hi @lorinusbaum,
I'd like to also welcome you to the group. I simply can't imagine receiving the news that you did, especially at 46 years old with young children. I appreciate your not wanting anything sugar coated. We're here to support you in the way you need support. Straight up. You can speak frankly about the things that concern you, scare you or darn right infuriate you. No judgement here.

I hope the reduced dosage of Tarceva is easier to tolerate. What side effects are you having to manage? Are you also being managed by a palliative care team? I know in another discussion thread you talked about living with unmanaged pain. I hate to hear that. Have you seen a cancer pain specialist?

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!!

@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

@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.
 

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