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Posts (5)

Jul 5, 2017 · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

@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

Jul 5, 2017 · Chronic Pain and Fibromyalgia - alternatives to medications? in Chronic Pain

@irene5, I believe I am the lady you were referring to 🙂 I have not yet gone into the pain discussion too far with my oncologist yet, because we are struggling to get my system to adjust to the daily targeted therapy I am on for my cancer. I have been taking Cymbalta and Trazadone for years for fibro, but the added stress on my nerves no longer seem to accept them as acceptable options. It was suggested in the cancer group I also belong to that I should talk to a cancer pain specialist, so that is on my list.

Thank you for your kind thoughts!

Jul 5, 2017 · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

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!!

Jul 2, 2017 · Living with lung cancer - Introduce yourself & come say hi in Lung Cancer

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!


Jul 2, 2017 · Chronic Pain and Fibromyalgia - alternatives to medications? in Chronic Pain

I am enjoying reading about some of the alternative methods of pain relief. I was diagnosed with Fibro in Rochester ten years ago, failing all 18 pressure points. This year I was diagnosed with stage IV non small cell lung cancer that has metastasized in my abdomen and brain. They are so focused on my cancer that my pain is not even a point of discussion at most appointments. I am going to try some of the mentioned methods and see if they help. I am fatigued from both diseases, so I move less and I see the pain increasing.