Living with lung cancer - Introduce yourself & come say hi

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.

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

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

Hi @lorinusbaum - I'm thinking about you today. How are you doing?

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.

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

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/