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?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Hello mikee2all,
Astra-Zeneca does have a Tagrisso drug reimbursement plan called AZ&Me Prescription Savings Plan and you can find information and application information on their website or by searching on AZ&Me. Note however that at least for US patients that they have raised their income thresholds in 2024 for who they will provide free Tagrisso. The income requirements and other stipulations should be stated on the website. It is probably a bit of work to manage the paperwork required but the benefits of continuing to be on Tagrisso will be well worth the effort!
Good luck with the reimbursement efforts and in managing the Tagrisso side effects!

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@layla123

Hi Pam, I also had a mucinous Adenocarcinoma in the LR lobe. It was removed 7 months ago. I had robotic surgery. It was tough for awhile after surgery felt like I had a bra on 3 sizes too small. Gabapentin and lidocaine patch helped a lot. You are the first person I’ve come across with a mucinous Adenocarcinoma.

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I am recovering from lobectomy upper right lobe. 6 weeks today. Mucinous Adenocarcinoma.. Robotic surgery, so far my recovery sounds similar to yours.. lots of numbness and nerve pain.
Definitely still feels like a tight bandage rapping around my mid-section. They said all lymph nodes were cancer free and removing the lobe got rid of the cancer. I have to have a cat scan in 4-6 months then to a pulmonologist to monitor me .. I feel very fortunate but still worried for future scan results.. you said your 7 months .. How are you feeling now .. have you had any therapy??

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@bernl

I am recovering from lobectomy upper right lobe. 6 weeks today. Mucinous Adenocarcinoma.. Robotic surgery, so far my recovery sounds similar to yours.. lots of numbness and nerve pain.
Definitely still feels like a tight bandage rapping around my mid-section. They said all lymph nodes were cancer free and removing the lobe got rid of the cancer. I have to have a cat scan in 4-6 months then to a pulmonologist to monitor me .. I feel very fortunate but still worried for future scan results.. you said your 7 months .. How are you feeling now .. have you had any therapy??

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I have had a double lobectomy. Two-thirds of my right lobe removed in 2014. Four years later it arrived into my left lung. Eighty-to Ninety percent of my left lung removed. They did not get a clear margin. 2020, spots on left lung and remaining right lung. I went for analysis at Mayo, after all the testing and radiation on my left lung. I now have scans every six months as spots continue to grow very minimal. I feel pretty fortunate to be walking around today and even play pickleball--should say go onto the court--my breathing is an issue as I don't have the capacity I used to have. I'm constantly out of breath, but again I feel pretty lucky.

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@fontspec

I have had a double lobectomy. Two-thirds of my right lobe removed in 2014. Four years later it arrived into my left lung. Eighty-to Ninety percent of my left lung removed. They did not get a clear margin. 2020, spots on left lung and remaining right lung. I went for analysis at Mayo, after all the testing and radiation on my left lung. I now have scans every six months as spots continue to grow very minimal. I feel pretty fortunate to be walking around today and even play pickleball--should say go onto the court--my breathing is an issue as I don't have the capacity I used to have. I'm constantly out of breath, but again I feel pretty lucky.

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That’s my biggest fear is recurring nodules.. . Did have any chemotherapy?? You definitely have had lots of surgeries.. Sounds like you have not let it get you down, I’m sure you have your moments.. As you said we are very lucky, 30 yr ago would have been a different story ..

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@bernl

That’s my biggest fear is recurring nodules.. . Did have any chemotherapy?? You definitely have had lots of surgeries.. Sounds like you have not let it get you down, I’m sure you have your moments.. As you said we are very lucky, 30 yr ago would have been a different story ..

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I had chemo after my first lobectomy. I do try and keep my head up. I try and play pickleball, and I can go three-to-four games and then I'm done.

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Hello all!! My name is Chris, I'm 66 years old and was diagnosed with 2 masses in my left lung in August. Both malignant, one small one and the other 8.5 Cm, with an artery passing through the middle of it. I have completed 5 out of 6 chemo treatments, and 24 of 30 radiation.
I have been looking for a good palce to find helpful information, and maye, just maybe, I have fianlly found it! I hope so!

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So I’m Visualizing an artery running through a tumor. Wow. How are they approaching radiation in that area?

This is a GREAT place for intel. None
of us are Docs so we are intentionally short on medical advice but long on shared experience. And we have some brilliant and empathetic mentors. I’m confident one will find their way to your thread soon.

In the meantime, tell us about yourself. What kind of cancer are your Tumors? How are you doing?

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@pb50

So I’m Visualizing an artery running through a tumor. Wow. How are they approaching radiation in that area?

This is a GREAT place for intel. None
of us are Docs so we are intentionally short on medical advice but long on shared experience. And we have some brilliant and empathetic mentors. I’m confident one will find their way to your thread soon.

In the meantime, tell us about yourself. What kind of cancer are your Tumors? How are you doing?

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Well, the artery makes it inoperable. So I am relying on chemo, and radiation. The cancer I have is Squamous Cell Carcinoma. More to the desciption, but not able to locate it all right now. The artery is the bright spot in the middle of the mass.

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Wow.

So chemo will shrink it and radiation will get as close as possible without breaching arterial wall? That’s an exercise in precision.

How are you managing anxiety?

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