Living with lung cancer - Introduce yourself & come say hi

Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a 9mm nodule on the brain. PET scan show vertebra L8 cancerous, left rib is cancerous, esophagus has cancer, and nasal cavity as well. I’m in MT and tried to sign up for a Mayo appointment but haven’t heard back from them. Not hopeful anyone can stop this freight train given the spread. But, let’s see. Thanks

Hi Colleen. Diagnosed with a 3.2 CM adenocarcinoma of the right lung. MRI also shows a 9mm nodule on the brain. PET scan show vertebra L8 cancerous, left rib is cancerous, esophagus has cancer, and nasal cavity as well. I’m in MT and tried to sign up for a Mayo appointment but haven’t heard back from them. Not hopeful anyone can stop this freight train given the spread. But, let’s see. Thanks

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.

@callalloo- Good morning, it's nice to meet you. What a wonderful story. It gave me goosebumps! The doctors must have done some research after your mom proved them wrong!

Thank you for sharing this story and for visiting the Lung Cancer group. And your story was worth a million smiles! Don't you?

For what it's worth, my mother was in the hospital and dying. A priest had said last rites, my brother and I were allowed to visit to sat good-bye (minor children weren't allowed otherwise at the time) and I was too young to really understand what was happening. My mother begged my father to go to the cheap burger hole-in-the-wall near our marina and buy a bagful of burgers with tons of fried onions. She hadn't been able to keep any food down for over a week and he was afraid to do this. But the other relatives said that, well, it's her dying wish and phooey on what the doctors would think.

My dad sneaked the 'sliders' past the nursing station under his coat. My mom ate one, ate another a half hour later, ate the rest of the fried onions before the night nurse came on duty.

My mom was released from the hospital a few weeks later and lived another 30+ years. She was a doctor and figured her body might be craving that meal for a reason.

She later suspected that maybe the sulfur from the onions, sugar in the ketchup and salt and oil some rehydrated her or kicked some imbalance back into stasis.

In my family, paying attention to what the body is trying to tell us became a mantra. I don't always pay attention but pay a price when I don't. And my mom's not exactly 'last meal' would never have been medical protocol. But it worked!

I so agree with you. I also believe that we now instinctively what are body's need- well most of the time. A day before my mom passed away she wanted a spoon full of whiskey or Scotch. I forget. I gave her one and my sister went nuts. I asked her if she was afraid of mom becoming an alcoholic. Anything that a dying patient wants should be top priority.

Yes,I am doing exactly as you. I am taking anti nausea meds (Prochlorperazine). I also take omeprozole for Gerd and drink tons of fluids. Did it eventually go away? Or does it come and go?

@gecko512 - Thank you for getting back with your response. Cisplatin is a gold standard, the Cadillac of chemo drugs for a lot of lung cancers. My stomach was a big problem too. I took anti-nausea pills, GERD meds and drank many gallons of water. Have you mentioned this problem to your infusion people or your oncologist?

Actually my tumor was only 1.1cm long. I used Mayo Clinic as second opinion since my Oncologist and surgeon here were pushing for surgery within a week. (During COVID).At that time the biopsy could not really show that it was even cancer. It showed signs but nothing definite. I used Mayo Clinic in Jacksonville as second opinion to have surgery. Mayo concurred. My surgeon (@Adventhealth)and I agreed that only a wedge would be taken from lung but if pathology doctor said it was cancer they would remove the lower lobe of right lung. I had robotic surgery. It was difficult to determine exact type of cancer so my surgeon sent it to Mayo Clinic in Arizona to determine it was Large cell neuroendocrine carcinoma with a little bit of adenocarcinoma mixed in. They thought all was taken out and I would not have to have chemo but when 18 lymph nodes were analyzed, they found 2 of 18 had metastasized.
Cisplatin was tough and have still some nausea after pooping. Also some foggy brain 6 months from when chemo was completed.

@gecko512- Welcome to Mayo Clinic Connect and the Lung Cancer Group! I am the Mentor for this group and have survived almost 24 years of NSCLC. My type of cancer is rare, it's a subtype of NSCLC called Multifocal Adenocarcinoma of the lung. You also have a rare form of lung cancer. Large cell neuroendocrine carcinoma (LCNEC) of the lung is a relatively uncommon, aggressive, and preoperatively difficult-to-diagnosis malignancy. It consists of both small and large cell cancers.

It sounds as if you had quite a bit of lung removed to hopefully get all of the tumor. My chemo, in 2007 also included cisplatin. That is one tough chemo, isn't it? Outside of the hearing loss have you experienced other symptoms?

I'm not a patient of Mayo Clinic but can ask @windwalker if she has recommendations. It's very disappointing to hear that your Oncologist's unfamiliarity with your cancer even if it is very rare.

Are you currently a Mayo patient?