1. < Lung Cancer
Moderator

Living with lung cancer - Introduce yourself & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Mar 2, 2017

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.

maraki | @maraki | Dec 23, 2018
In reply to @kanaazpereira "Hello Maria @maraki,and welcome to Connect. It’s but natural to be worried and anxious when your..." + (show)
@kanaazpereira

Hello Maria @maraki,and welcome to Connect. It’s but natural to be worried and anxious when your spouse has cancer – I’m so glad you’ve joined this group. I'd like to introduce you to @burrkay @basil9 @bestcare @ina3 @sderbin @lady1lake, who are also living with or caring for someone with stage 3b or 4 non small-cell lung cancer. I’m also tagging @reibur1951 and @lighthouse68 who have some experience with immunotherapy and lung cancer and may be able to give you more insights.

@maraki, it’s very normal to want to “fix” things when your loved one is ill, but as one of our Mentors mentioned in another discussion, I sincerely encourage you to "try not to dwell too much on the future or the past – just stay in today. That is sometimes difficult but always useful!”
And, please lean on the Connect community for support, even if you just want to talk. We’re here and we’re listening.

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@kanaazpereira thank you for your kind words. We must stay strong but it' s so difficult sometimes. I hope to learn more about new therapies or anything new in this forum. God bless you

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margot69 | @margot69 | Dec 23, 2018
In reply to @merpreb "Oh Margot that's totally unprofessional. You really need to find a good doctor. I fear for..." + (show)
@merpreb

Oh Margot that's totally unprofessional. You really need to find a good doctor. I fear for you.

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Well, I am in Sutter Health and things are convenient for tests, labs, etc. I have looked up other doctors and one's with good reviews are not taking new patients.

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1 reply
Merry, Alumni Mentor | @merpreb | Dec 23, 2018
In reply to @margot69 "Well, I am in Sutter Health and things are convenient for tests, labs, etc. I have..." + (show)
@margot69

Well, I am in Sutter Health and things are convenient for tests, labs, etc. I have looked up other doctors and one's with good reviews are not taking new patients.

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Do you know anyone who could pull strings for you?

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bluelagoon | @bluelagoon | Dec 23, 2018
In reply to @margot69 "Thank you for taking the time to check. I did check that list and Stanford and..." + (show)
@margot69

Thank you for taking the time to check. I did check that list and Stanford and UCSF are on the list but not at the top. My GI said Stanfird has a satellite Cancer near us I could get treatment at. I also read any biopsies should be sent out for genetic testing and he said they automatically do that but I don't trust things being done right.

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My thought would be that a Top 20 ranking nationally still says they are at the top of the game compared to the majority. I guess my question would be how do they compare to this Sutter Gould? If I were sure I wanted to stay local I would want to try to find the best option I could on the local level. I wonder if your local American Cancer chapter could help with any insight?

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1 reply
margot69 | @margot69 | Dec 23, 2018
In reply to @bluelagoon "My thought would be that a Top 20 ranking nationally still says they are at the..." + (show)
@bluelagoon

My thought would be that a Top 20 ranking nationally still says they are at the top of the game compared to the majority. I guess my question would be how do they compare to this Sutter Gould? If I were sure I wanted to stay local I would want to try to find the best option I could on the local level. I wonder if your local American Cancer chapter could help with any insight?

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If it comes to that, I would not feel comfortable with Sutter, no matter what my PCP says.
My GI Doctor, that works there, told me to get a second opinion and said a hospital in the next town, has a Cancer Center and work with Stanford.

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1 reply
Merry, Alumni Mentor | @merpreb | Dec 24, 2018
In reply to @margot69 "If it comes to that, I would not feel comfortable with Sutter, no matter what my..." + (show)
@margot69

If it comes to that, I would not feel comfortable with Sutter, no matter what my PCP says.
My GI Doctor, that works there, told me to get a second opinion and said a hospital in the next town, has a Cancer Center and work with Stanford.

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margot- Do it and Merry Christmas!

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Merry, Alumni Mentor | @merpreb | Dec 24, 2018
In reply to @kanaazpereira "Hello Maria @maraki,and welcome to Connect. It’s but natural to be worried and anxious when your..." + (show)
@kanaazpereira

Hello Maria @maraki,and welcome to Connect. It’s but natural to be worried and anxious when your spouse has cancer – I’m so glad you’ve joined this group. I'd like to introduce you to @burrkay @basil9 @bestcare @ina3 @sderbin @lady1lake, who are also living with or caring for someone with stage 3b or 4 non small-cell lung cancer. I’m also tagging @reibur1951 and @lighthouse68 who have some experience with immunotherapy and lung cancer and may be able to give you more insights.

@maraki, it’s very normal to want to “fix” things when your loved one is ill, but as one of our Mentors mentioned in another discussion, I sincerely encourage you to "try not to dwell too much on the future or the past – just stay in today. That is sometimes difficult but always useful!”
And, please lean on the Connect community for support, even if you just want to talk. We’re here and we’re listening.

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Hello and welcome @maraki- I think .we all tend to worry more around the holidays because things are so overwhelming,. I agree with Kanaaz, be in the now- You can't change yesterday or control tomorrow yet. Set your priorities- is everyone warm, fed and pain free? Good. That covers today. Then set your sites on tomorrow- what is the most important thing to attend to? Good, then come back to today. Finish decorating or wrapping or even shopping. Cook for tonight or tomorrow. Do things that you can control. Rest if you can and spend tons of time with your husband. I have stage 4 NSCLC. I have had four lung cancers and I am a survivor of 21 years.
It's fantastic that immunotherapy has been so effective. Does he have any troubling side affects?

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meka | @meka | Dec 24, 2018

Hey elves, long story, as usual with VA. Have appointment with Mayo, January 14, for tests. Not approved by VA, (political stuff), but will use Medicare and eat 20 percent, my life is worth it!! Don't have all the details, but will know more Wednesday. Now I can start worrying about how to do it, at least it's a new worry!! Energy hugs and happy????

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Merry, Alumni Mentor | @merpreb | Dec 24, 2018

@meka- I am so so happy to hear this! yayayay Happy holidays.

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1 reply
maraki | @maraki | Dec 24, 2018
In reply to @merpreb "@meka- I am so so happy to hear this! yayayay Happy holidays." + (show)
@merpreb

@meka- I am so so happy to hear this! yayayay Happy holidays.

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@merpreb I truly admire you! You are an inspiration. My husband didn't have severe side effects from immunotherapy except for a thyroid gland dysfunction. He has also COPD and a lot of phlegm that causes difficulty in eating and breathing sometimes. From the diagnosis a year ago he has adenomas in the adrenals but the doctors don' t say much about it. They are confused because the tumor in the lung has shrunk but this thing in the adrenals has increased. They say that immunotherapy often does that in the glands so they can' t be sure if it's a metastasis. If it continues they will change the therapy to chemo. He doesn' t want to do chemo. Also i' mad at him because the last two weeks he spits blood mixed with phlegm and he doesn' t want to go to hospital because it' s Christmas. Anyway in three days we have an appointment for CT scan. I wish you and your family happiness, health and joy. Merry Christmas!

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