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.

Profile picture for Lisa, Volunteer Mentor @lls8000

@dedehans, Eight years on the same treatment is great to hear. You are an inspiration to others. The drug side effects are always a hard part of the reality of the disease. I'm always surprised how they can change over time too. I'm glad that you continue to find ways to manage the hurdles. Keep on keeping on!

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Thank you Lisa. I intend to. Sometimes have to physically and mentally push this old carcass to keep going but I do and think the positive movement keeps me as well as I can be. Oh, the many mornings I wake up (530am) and growl " you don't have to get up right now" but I do get up and get going as I have responsibilies to fulfill. But....I sleep as long as I want to one day a week.....9:00am. One must allow oneself this kind of luxury to do this if it works.

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Profile picture for dedehans @dedehans

I am on Xalkori and have been for 8 years. Had LLL 8 years ago and taken 200m tablet 2x a day for years. Have been on 1 200m pill for a year and so far CT scans "unremarkable". I am very fortunate. My biogenetic markers fell into perfect alignment for this treatment.
As for side effects....I cannot take the xalkori without zofran pill as I throw up without it. When I took 2 doses a day I would take before a meal ...breakfast and dinner...)

The swelling of my legs and ankles comes and goes.....have heart issues so have to address it....I have taken spironolactone to reduce the swelling but it makes me feel awful so I try hopefully to reduce the swelling by drinking lots of water.

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@dedehans, Eight years on the same treatment is great to hear. You are an inspiration to others. The drug side effects are always a hard part of the reality of the disease. I'm always surprised how they can change over time too. I'm glad that you continue to find ways to manage the hurdles. Keep on keeping on!

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I am on Xalkori and have been for 8 years. Had LLL 8 years ago and taken 200m tablet 2x a day for years. Have been on 1 200m pill for a year and so far CT scans "unremarkable". I am very fortunate. My biogenetic markers fell into perfect alignment for this treatment.
As for side effects....I cannot take the xalkori without zofran pill as I throw up without it. When I took 2 doses a day I would take before a meal ...breakfast and dinner...)

The swelling of my legs and ankles comes and goes.....have heart issues so have to address it....I have taken spironolactone to reduce the swelling but it makes me feel awful so I try hopefully to reduce the swelling by drinking lots of water.

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Profile picture for Lisa, Volunteer Mentor @lls8000

Hi @lmillard345, welcome to Mayo Connect. Isn't it amazing to watch these targeted therapy medications do their work?! I'm glad that she's showing improvement.
Has her doctor provided any advice to manage the side effects? I have experience with a different targeted therapy, and sometimes the side effects do subside on their own over time. How long has she been taking the Tabrecta?

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Thank you for reaching out, I appreciate it very much. My mom has been on tabrecta since April 1st. I got her compression socks which are helping with the swelling and comparing works for her nausea. Any tips would be useful. Thank you.

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Profile picture for lmillard345 @lmillard345

My mom also has swelling and nausea. She's on 4 pills a day. Prayers lifted up for you to get good results!

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Hi @lmillard345, welcome to Mayo Connect. Isn't it amazing to watch these targeted therapy medications do their work?! I'm glad that she's showing improvement.
Has her doctor provided any advice to manage the side effects? I have experience with a different targeted therapy, and sometimes the side effects do subside on their own over time. How long has she been taking the Tabrecta?

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Profile picture for joycegray1940 @joycegray1940

Thank you for the information regarding Tabrecta. I'm so glad she is showing improvement. I started on it about 1 & 1/2 years ago taking four pills a day now I am down to two a day. I have had a lot of side effects, mainly swelling, but also dizziness's & balance issues. About six months ago the doctor said I had some diminishing of my lung cancer which is great, I just wish it had all gone away. He said I don't need another CT scan for six months, but I do need to continue the medicine. Good luck to your Mom & God bless.

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My mom also has swelling and nausea. She's on 4 pills a day. Prayers lifted up for you to get good results!

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Profile picture for lmillard345 @lmillard345

My mom started Tabrecta on April 1st this year. She just had her 2nd pet scan and the improvement is miraculous!

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Thank you for the information regarding Tabrecta. I'm so glad she is showing improvement. I started on it about 1 & 1/2 years ago taking four pills a day now I am down to two a day. I have had a lot of side effects, mainly swelling, but also dizziness's & balance issues. About six months ago the doctor said I had some diminishing of my lung cancer which is great, I just wish it had all gone away. He said I don't need another CT scan for six months, but I do need to continue the medicine. Good luck to your Mom & God bless.

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Profile picture for joycegray1940 @joycegray1940

Has anyone ever heard of the cancer medication Tabrecta used for lung cancer?

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My mom started Tabrecta on April 1st this year. She just had her 2nd pet scan and the improvement is miraculous!

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Profile picture for Colleen Young, Connect Director @colleenyoung

@catsandra, I can imagine you're concerned about the potential damage that radiation can do. The radiation specialists will deliver the treatment to have the maximum effect while trying to minimize negative impacts. They will monitor you closely.

The radiation can kill cancerous cells, reduce the size of the nodules and/or eliminate them, slowing the progression.

Are you getting radiation every day? How is it going?

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Yes every day. 6 weeks 5 x week. I’m on #8. Actually doing good. Not sick yet. Just worried of those rays bouncing elsewhere. Thx u for responding to me

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Profile picture for catsandra @catsandra

Hi I’m 76 and on day 2 of radiation. I have one tumor inside lung and 2 cancerous nodules outside. Was told nodules could migrate and could travel other places ( not in other parts thank goodness) had 2nd pet scan after nodules found. I’m told possibly radiation could affect esophagus. As anyone experienced what would be my symptoms if it does. I’m alittle worried. With age I’m not taking chemotherapy just radiation. Will this kill cancer in nodules? Or is this hopeless? Glad I found your blog

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@catsandra, I can imagine you're concerned about the potential damage that radiation can do. The radiation specialists will deliver the treatment to have the maximum effect while trying to minimize negative impacts. They will monitor you closely.

The radiation can kill cancerous cells, reduce the size of the nodules and/or eliminate them, slowing the progression.

Are you getting radiation every day? How is it going?

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