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.

Dear Nancy @shortshot,

I'm so sorry to learn about your loss. Losing a spouse is one of the most painful losses a person can experience – I cannot begin to imagine how much you must miss the comfort and support you got from being part of a couple.

Everyone grieves in their own way, but we often forget to give ourselves enough time to grieve – especially as mothers and wives. It must be so difficult to surrender to grief, and there’s no definite timetable for this. But, nothing lasts forever (including the pain from losing a loved one), so just know that "this too shall pass."

At such times, people say join a support group - I want you to know that you are part of a whole community here, on Connect. Have you seen this discussion, "Loss and Grief: How are you doing?" https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/ I encourage you to join in and meet the many members who’ve had experiences similar to your own. Feel free to join in, share your story, perhaps even offer suggestions to fellow Connect members; often by holding someone else’s hand and by being their support, our own pain lessens a little bit too.
Losing a beloved one and grief is a difficult journey, but you don’t have to do it alone.

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Nancy (shortshot)

I replied to you weeks after your dear husband had passed. I too lost my husband months before you did and I have suffered from Stage IV lung cancer since 2013. I have been on Immunotherapy since Sept, 2015. Unlike you, I have very little family. I have a 27 year old son who suffers from extreme anxiety and lives with me. Other than my son, I have a few out of town brothers who I am not close to. I moved to the opposite end of the state of Florida 5 years ago so all my very close friends are 6 hours away. It is very difficult and lonely to be in this position. I have great neighbors but I try not to complain or show how ill I am as I imagine that gets old quickly. So, just wanted to let you know I am in your boat, just a little bit ahead of you. Reach out when ever you can! Karen

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Hello, My husband had the upper lobe of his left lung removed on July 31,2018 along with two ribs where the cancer had attached. He was in the hospital for 16 days before the lung sealed and he could go home. He is now having low grade temperature and his white blood count keeps going up. He is still in a lot of discomfort and can’t get comfortable. Oncologist says he can’t get treatment until temperature and WBC is normal. We are so worried and don’t know what to do.

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Sounds like an infection has set in. So many people are getting these from hospitals today. Our "bugs" are changing to make it difficult to a smooth healing. Try and take one day, one hour at a time. Focus on the infection and not what is to be in the future, because we just can't handle or do anything about that now. He has to fight the infection (I'm assuming it is one) and that is enough to handle. Thinking about anything else will add tension, which will make recovering more difficult. Please keep us updated. Best

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@merpreb

Sounds like an infection has set in. So many people are getting these from hospitals today. Our "bugs" are changing to make it difficult to a smooth healing. Try and take one day, one hour at a time. Focus on the infection and not what is to be in the future, because we just can't handle or do anything about that now. He has to fight the infection (I'm assuming it is one) and that is enough to handle. Thinking about anything else will add tension, which will make recovering more difficult. Please keep us updated. Best

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CT scan of lung has been done and the surgeon said it looks good. No infection there. Oncologist wants to do a bone marrow biopsy next week. Checking the thyroid and giving him antibiotics. What does all this mean?

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I had lung cancer surgery on May 30. They removed the right lower lobe. Subsequently, I had an infection in the liver and was on a drain. One of the antibiotics caused a seizure and I had to be taken to hospital by Emergency Services. Off the antibiotics now, and the PICCline and the drain to my liver. I had had a small stroke in January, which I didn’t even notice. But my balance was shot. I’m going to Physio twice a week. Have graduated from a walker to a cane. No chemo - we’re on a wait and see because I have a number of autoimmune diseases. EEG next week and appt with Oncologist in October.

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@shirl3924

CT scan of lung has been done and the surgeon said it looks good. No infection there. Oncologist wants to do a bone marrow biopsy next week. Checking the thyroid and giving him antibiotics. What does all this mean?

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Hi @shirl3924, how are you and your husband doing today?
Did your husband start antibiotics already? Are they helping? I'm not a medical professional, but I assume they suspect infection somewhere if antibiotics were prescribed. Like @marylou705 said, it may be an infection elsewhere.

I know you are frightfully worried. But as @merpreb said, try to focus your worry into action. Your questions are good questions. When you see your husband's medical team this week as how all these tests are connected. Repeat back to them what you understood them to have said. This will help remember what they said and expose anything that you may have understood incorrectly or that they didn't explain thoroughly enough.

Have you been able to find a way to help your husband feel comfortable?

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@colleenyoung

Hi @shirl3924, how are you and your husband doing today?
Did your husband start antibiotics already? Are they helping? I'm not a medical professional, but I assume they suspect infection somewhere if antibiotics were prescribed. Like @marylou705 said, it may be an infection elsewhere.

I know you are frightfully worried. But as @merpreb said, try to focus your worry into action. Your questions are good questions. When you see your husband's medical team this week as how all these tests are connected. Repeat back to them what you understood them to have said. This will help remember what they said and expose anything that you may have understood incorrectly or that they didn't explain thoroughly enough.

Have you been able to find a way to help your husband feel comfortable?

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Hi@colleenyoung. He had three days of antibiotics in the hospital last week and has taken them orally since. WBC was down some when he had blood work this morning.He went for a bone marrow biopsy this morning. It went well and he ate a good breakfast after. He has been napping since we got home. We won’t see the oncologist again until October 1. He continues to run a low grade temperature and is in a lot of discomfort on the side where he had surgery. I am trying to get his mind off of what is in the future and get him to live today. I don’t want depression to get him down but he is giving in to it. We did go out on our pontoon boat and watch the sunset yesterday.

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@marylou705

I had lung cancer surgery on May 30. They removed the right lower lobe. Subsequently, I had an infection in the liver and was on a drain. One of the antibiotics caused a seizure and I had to be taken to hospital by Emergency Services. Off the antibiotics now, and the PICCline and the drain to my liver. I had had a small stroke in January, which I didn’t even notice. But my balance was shot. I’m going to Physio twice a week. Have graduated from a walker to a cane. No chemo - we’re on a wait and see because I have a number of autoimmune diseases. EEG next week and appt with Oncologist in October.

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Hello- You have your hands full!! I'm sorry for all your discomforts and challenges. Going from walker to cane is a big step so keep up the !! Stay strong!!

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Does anyone have any knowledge about squamous non small cell lung cancer that has spread to nearby lymph nodes? I asking this for a friend of mine.Curious about treatment options for this type of cancer?
Thank you in advance
Jackie

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