Living with lung cancer - Introduce yourself & come say hi

OK I will do that thank you.

Hi Colleen-
Thanks for the nudge...we have been busy with lots of travel and family in. So, I am guilty of being on the sidelines for awhile...sorry!
My wife, Kay is doing pretty well. We were to Mayo, Florida June 18-21 for an echo and follow up PET SCAN, thinking we would get a little closer review from our oncologist there, but not sure it was worth the expense.
We met with him after her tests, and the radiologist had not read the scans yet. Our oncologist compared the prior CT Scan (done locally), but he was unable to conclude what he saw. He said he would get the report and call us the following morning. That was on June 21...still no call! We have sent him a message...still no call!!
The radiologist report was on the Mayo portal on June 24, but only compares the scan with the previous PET SCAN done at Mayo-not with the CT Scan from March (done locally), which had shown "marked improvement", shrinking of the tumors, etc.
Prior to our visit, we had sent the doctor a disc with the local CT Scan, and one would have thought the radiologist would have compared it with the new scan done on June 21. He did not, so it only shows improvement from the earlier PET SCAN done last December. Frankly, we already had that report!
So...we simply don't know if the trial drugs are still working!???
Frustrating, and confusing!

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

I came to Mayo (Rochester) in June 2016 to go through the Executive Health Program. As a new patient, they did a CT on my internal organs and found a nodule in my left lung (upper lobe). I had another CT done of it in December 2016 with no change. Last month I returned to Mayo and the CT show that the nodule had grown and changed. I live in Michigan but will be coming to Mayo Rochester in two weeks for minimally invasive surgery to remove the growth. I am hopefully 'one of the lucky ones' whose cancer was caught early and will be very treatable. I had breast cancer (the right breast) 16 years ago and had chemo and radiation then. I am wondering how painful/uncomfortable one is after this surgery - is it breathing that hurts? raising the arm? what???

Hi wallyk-
Consider yourself fortunate that you had gone through the executive health program! Mayo has the best medical staff in the world, in my opinion. We consider them FAMILY!!
My wife was not so lucky! We had followed the recommendation of a local Pulmonology doctor nearby for 15 months or more, before we sought help from Mayo. We credit our family with encouraging us to make the trip to Rochester, some 1100 miles away!
Although she is now stage 4, she is alive and back to enjoying life today...thanks to the excellent care at Mayo!
My wife had two lobes in her right lung removed at Mayo, Rochester in May, 2015 using the VATS procedure.
As for pain, yes she struggled with it for a few days, but that's what pain pills are for-hah. She had the surgery on a Friday and by the following Tuesday she was on her way home in South Carolina.
The important thing is that the doctors at Mayo are very diligent to check the surrounding lymph nodes to see that the Cancer has not invaded other areas (metastatic cancer). In my wife's case it remained undetected, but a year later had in fact metastasized to the left lung. She was fortunate to have signed up for chemo treatments, which later qualified her for new therapies through clinical trials.
Although Mayo had done the usual studies of the biopsies, they discovered 18 months later, through a molecular study that her cancer, although in the lungs, was from the HER2 mutation; which is normally found in breast cancer patients. Mayo then enrolled her in a clinical trial so she is now getting an infusion of a doublet (herceptin/perjeta) every three weeks. That seems to be working as the tumors are now indeed shrinking...
Bottom line be prepared for some pain, but know that it will be over in a few days...just like any other surgery. However, be sure they order a molecular study right away, so you don't have to do another biopsy later - that was especially uncomfortable for my wife.
Best of luck with your journey...stay brave and positive...be sure you have a good support group through your church, family and neighbors...they will be an important key to your success!

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

@burrkay, that sounds frustrating and confusing indeed. Did you also send a message through the portal? I hope you get answers this week.

Thanks so much for your thoughtful and thorough response. I greatly appreciate your taking the time to share your thoughts and information with me. Best wishes to you and your wife.

Yep frustrating!Just recd a letter from Mayo today saying Dr Menefee is "transitioning out of Mayo Clinic" - so that I guess explains it.Thanks!