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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?
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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.
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
@lorinusbaum Lung cancer patients and patients in general are lucky to have an advocate like you in their court! Thank you.
@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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2 Reactions@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
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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1 Reaction@wallyk Oh
she does Wally. She has a video on YOUTUBE, and not sure if on Ted Talks. Have
to ask her. Linda is a big time advocate. - Terri M.
@llwortman Linda, if you don't mind my asking; what stage and kind was your
lung cancer? Thanks!
@llwortman Thank
you for turning me onto Looney and his research team. They have LOTS of
published articles on the UCSF site about lung research that looks very
interesting. (UCSF, for those that don't know, is the University of California
San Francisco. They are number one in lung transplant survivals)
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1 Reaction@llwortman,
Hi Linda. I could not find this article that you just recommended to read. Many
sites came up with the same title, so I do not know if it is the same article.
They weren't on trusted sites. I looked it up on the Mayo Clinic site. This is
what they had to say about it. Said that it is extremely rare that the lungs
make these Megakaryocytes blood cells. They have only been detected posthumously
from autopsy. They are the kind of cells that cause cancers in the blood and
tumors. My guess is that it is the bodie's way of trying to compensate for the
bone marrow not doing all that it should. It is interesting that the lungs can
do something other than gas exchange. Who knows, in the future, they may be able
to tweak the genes and have the lungs produce some good blood cells. Mind you,
my take on this may be off, but it is how my little brain interpreted it.