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?

@livethrufocus

Would like to view some of the videos on this topic but I need some text as well. Are there any with text available at the present time?

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Colleen: WOW ! This library of video information is greAt! With a capitol A!
Thank you for sharing.
More hugs,
linda

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@merilee

All good here, i have been trying to start walking again…not long distances but at least a few blocks…I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right……Think i am the only one here from Wisconsin.?? Hope is well with you….

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This has been a long month, I have got a heck of a cold, coughing, spent a day in the hospital, took the medicine and still have this bad cold. They did a cat scan, my cancer’s have grown some. My right lung has one “cancer” fairly close to my (arota). Will see my oncologist on May 3rd. And I had to have my eyes tested, New glasses, will pick them up on Tuesday. My have to see a doctor in “urgent care”. Some times it seems as though every thing happens at once. Very depressed today. Had my birthday last Sunday(84) and today is my “baby daughter turned 60. Life goes on! (shortshot80)

Liked by merilee

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@merilee

All good here, i have been trying to start walking again…not long distances but at least a few blocks…I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right……Think i am the only one here from Wisconsin.?? Hope is well with you….

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Hi Nancy, I’m sorry to hear that you’ve had a tough month. Happy belated birthday to you and happy birthday to your 60-year young baby girl today. Will you be celebrating together today?

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@merilee

All good here, i have been trying to start walking again…not long distances but at least a few blocks…I have another scan coming up a week from Monday..I get so scared and nervous about it..Its like i put things on hold till i have it..crazy right……Think i am the only one here from Wisconsin.?? Hope is well with you….

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No, she lives about 80 miles away. She was here yesterday, so visited a little. Her two daughters had her leave the house so
they could decorate the place for her party last night. I’m sure that lots of her friends were there. We could have gone, but it is a long
ride for my husband of 66 years. Really me too. Most any rides of any miles require a night at a motel. I have been sick with a cold or something for the past three weeks, I did not even celebrate my birthday. (84) I did spend one day in the hospital, with all kinds of tests and cat scan. So I even received a copy of the results of the cat scan. Wasn’t very good, showed some growth of both cancers and some kidney problems too. Hopefully better days ahead! (shortshot80) Nancy

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Help,I cant find my discussion?

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@pattymac

Help,I cant find my discussion?

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Hi Patty,
The discussion that you started “Lung nodules & scared!” can be found in Lung Health group. Here are the links:
– Lung nodules & scared! https://connect.mayoclinic.org/discussion/lung-nodules-scared/
– Lung Health group http://mayocl.in/2mb8F2s

To easily find the discussions you’ve posted in, go to your profile. Simple click on your @username to find your profile.
Hope this helps.

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Hi all,
It’s been a while since we’ve heard from many of you. @merilee and @bestcare How are you doing?
@burrkay How is your wife doing?

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Colleen. This is Merilee you emailed me as I have not posted in awhile.. I have been doing ok, I have an upcoming scan in a couple weeks. Anxiety kicking in of course., The last couple scan were good .. I do come on this site from time to time just haven’t posted..thank you for thinking of me. I’ll try to update more than I have
Take care all. Merilee

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Hi Marilee: So great to hear from you ! I think of you so often. I understand your anexity, because I have felt the same. The good news is education with research is advancing quickly in thorasic and pulmonary medicine. You and I are surviving and both doing good, and isn’t that is amazing ? I has been 9 years and 6 mints (but who’s counting;-)
since my lung cancer surgery. With each 6 month check up I become less and less anxious about my CT’s. I love sharing stories as we Connect and find understanding about this amazing journey of Saving Lungs & Lives!
What activities have you been doing?
Let’s stay connected! Don’t stay away quiet so long, ok? please?
big hug,
linda w

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So good to hear from you, @merilee. Thanks for popping back in. I’m glad to hear that your staying connected and reading the conversations. Those darn scans. You gotta love and hate ’em. Of course, you can’t help but be anxious about it. But you also know that you’d rather find out than not. I’ll be thinking of you. Do let us know how it goes. Or post before if you need distraction. I’m sure Linda and I can find some good jokes to share or something silly 🙂

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@colleenyoung

So good to hear from you, @merilee. Thanks for popping back in. I’m glad to hear that your staying connected and reading the conversations. Those darn scans. You gotta love and hate ’em. Of course, you can’t help but be anxious about it. But you also know that you’d rather find out than not. I’ll be thinking of you. Do let us know how it goes. Or post before if you need distraction. I’m sure Linda and I can find some good jokes to share or something silly 🙂

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OK I will do that thank you.

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@colleenyoung

Hi all,
It’s been a while since we’ve heard from many of you. @merilee and @bestcare How are you doing?
@burrkay How is your wife doing?

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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!

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@colleenyoung

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.

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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

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@colleenyoung

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.

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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

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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???

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