SCLC - Dad Newly Diagnosed

fighting4dad
fighting4dad Member Posts: 6
in Lung Cancer #1
Hi everyone,

First let me introduce myself. My name is Megan and I am 23 years old. My Dad (age 53) was just diagnosed with extensive SCLC. We went into the ER last Friday because we thought he might of had a stroke. His symptoms were numbness on his right side and a headache. Well, after he was given a CT scan it was discovered he had a tumor in his right lung and four mets on his brain. He then was given an MRI and one tumor was found on his spine. At this point I was devastated, but thought to myself thank God we got him into the hospital when we did. I don't even want to think about what could have happened if we waited any longer.

He has a very aggressive team of doctors who have started him on radiation as well as chemo (etoposide and carboplatin). My dad has made it very clear to his family that he has decided to fight his cancer and has so much to live for. He has a very large support system around him. My dad looks healthy, and he says he feels good. However, I know my dad is sick and I know this is going to be a tough road ahead. My family and I have been taking this very difficult. I feel that I am on an emotional roller coaster that just won't stop. I am very close to my Dad and love him so much.

I guess my reason for posting is to connect with other people going through this and maybe to offer some words of comfort. This has been so overwhelming and I want to make sure I am asking the right questions to his doctor. For example, should I bring up clinical trials? Will they have to preform surgery to remove the mets on his brain? What happens if the chemo doesn't work?

So many questions, and just not enough answers. Thank you all for reading my story. I appreciate any feedback.

Comments

  • NKY_Dave
    NKY_Dave Member Posts: 12
    #2
    The Brain Mets
    Megan-

    First of all, I am really sorry your Dad and your Family are having to deal with this issue. My wife was diagnosed with limited sclc in November of 2009. She, too, had the same chemo at first as well as radiation on the lung tumor and whole brain radiation (WBR) as a preventative measure to help alleviate brain mets in the future. She went into remission in June of 2010 and stayed that way until January of 2011. She had her 3 month scans that showed a tumor on her brain (the mets came in spite of the radiation). This tumor was removed via directed radiation called cyber knife. In April they found the tumor had returned in her lungs. She immediately started chemo with topotecan. The lung tumor spread to her lymph nodes as well as her other lung. The chemo was switched to taxotere but now there were new problems with her brain. It seems by August she had developed five new lesions in her brain. These could not be treated with the cyber knife due to the quantity. They did WBR again and kept up the chemo. At this same time, a drug that had been used previously for brain mets from melanoma as well as certain types of brain tumors was approved for sclc with brain mets. This drug is called temodar. Her Onc put her on this drug then as well (it is a type of chemo that will cross the blood-brain barrier as most IV chemos won't do this very well). She was told in August to hope for making it until Christmas by one of her radiologist, yet we are here in March of 2012 with her stable and still fighting. The cancer is undetectable in her lungs and lymph nodes and shrinking in her brain.

    My main point is that if your Dad has difficulty finding a treatment that will work for the brain mets or if they come back you should ask his Onc about this pill. It appears to be keeping my wife stable right now.

    Good luck with your fight. You and your family are definitely in my prayers!

    Dave
  • fighting4dad
    fighting4dad Member Posts: 6
    #3
    NKY_Dave said:

    The Brain Mets
    Megan-

    First of all, I am really sorry your Dad and your Family are having to deal with this issue. My wife was diagnosed with limited sclc in November of 2009. She, too, had the same chemo at first as well as radiation on the lung tumor and whole brain radiation (WBR) as a preventative measure to help alleviate brain mets in the future. She went into remission in June of 2010 and stayed that way until January of 2011. She had her 3 month scans that showed a tumor on her brain (the mets came in spite of the radiation). This tumor was removed via directed radiation called cyber knife. In April they found the tumor had returned in her lungs. She immediately started chemo with topotecan. The lung tumor spread to her lymph nodes as well as her other lung. The chemo was switched to taxotere but now there were new problems with her brain. It seems by August she had developed five new lesions in her brain. These could not be treated with the cyber knife due to the quantity. They did WBR again and kept up the chemo. At this same time, a drug that had been used previously for brain mets from melanoma as well as certain types of brain tumors was approved for sclc with brain mets. This drug is called temodar. Her Onc put her on this drug then as well (it is a type of chemo that will cross the blood-brain barrier as most IV chemos won't do this very well). She was told in August to hope for making it until Christmas by one of her radiologist, yet we are here in March of 2012 with her stable and still fighting. The cancer is undetectable in her lungs and lymph nodes and shrinking in her brain.

    My main point is that if your Dad has difficulty finding a treatment that will work for the brain mets or if they come back you should ask his Onc about this pill. It appears to be keeping my wife stable right now.

    Good luck with your fight. You and your family are definitely in my prayers!

    Dave

    Thank you
    Dave,

    Thank you for your reply. Your wife sounds like a very strong woman. I am happy to hear you and your wife are still fighting as it gives me hope for my dad. I will bring up tenodar if his radiologist tells us the radiation is not working. I know I need to ask his oncologist, but I am wondering why they decided not to do the radiation on my dad's lung.

    Thank you for your prayers as my prayers are with you and your family.

    Megan
  • daughter2t
    daughter2t Member Posts: 12
    #4
    Hi Megan I know exactly how
    Hi Megan I know exactly how your feeling.. My father was also newly diagnosed with lung cancer and it has been a huge shock on our family aswell. By the time we discovered he had Cancer it was stage 3B. He to has a very aggressivive team of doctors and has had radiation and now starting chemo. We can't give up hope that our dads like many of the others on this cancer network are going to win this battle .
  • tdejonge7684
    tdejonge7684 Member Posts: 11
    #5
    I have a similar situation
    I have a similar situation with my dad right now as well. I am 29 he is 62 and he was diagnosed in early January with SCLC.

    Eventually the scary part passes and it becomes a fight.

    I have found a lot of support at this great website as well as

    http://www.inspire.com/groups/lung-cancer-survivors/topics/small-cell-lung-cancer-general/

    they have a general SCLC forum as well as dedicated extensive and limited SCLC forums.
  • fighting4dad
    fighting4dad Member Posts: 6
    #6
    daughter2t said:

    Hi Megan I know exactly how
    Hi Megan I know exactly how your feeling.. My father was also newly diagnosed with lung cancer and it has been a huge shock on our family aswell. By the time we discovered he had Cancer it was stage 3B. He to has a very aggressivive team of doctors and has had radiation and now starting chemo. We can't give up hope that our dads like many of the others on this cancer network are going to win this battle .

    Thanks for the support
    Thank you for the support. Knowing that I am not alone in this fight makes me feel better. We all have to stay strong for our loved ones, because it is them who are the heroes.
  • fighting4dad
    fighting4dad Member Posts: 6
    #7
    tdejonge7684 said:

    I have a similar situation
    I have a similar situation with my dad right now as well. I am 29 he is 62 and he was diagnosed in early January with SCLC.

    Eventually the scary part passes and it becomes a fight.

    I have found a lot of support at this great website as well as

    http://www.inspire.com/groups/lung-cancer-survivors/topics/small-cell-lung-cancer-general/

    they have a general SCLC forum as well as dedicated extensive and limited SCLC forums.

    thank for sharing that
    thank for sharing that forum! I have been looking around on it...lots of great stories and information.
  • mikedickerson
    mikedickerson Member Posts: 6
    #8
    fighting4dad said:

    thank for sharing that
    thank for sharing that forum! I have been looking around on it...lots of great stories and information.

    my aunt
    My aunt was diagnosed about a week ago with extensive small cell lung cancer and the P.E.T. scan said that it hasd spread to her liver and stomach. Anyway im on here cause she is not very good with computers and I would like to find somebody that is fighting the same type of cancer that she is. Somebody for her to talk to that can understand were she is coming from. Cause us as family members and loved ones we can love and give all the support in the world but nobody can truely understand what they are thinking and going threw accept someone else that is diagnosed with this horrible affliction.
    So please if there is anybody out there that understands and agrees with me please feel free to call me. Im hoping we can all help each other by building a support group to help fight this terrible cancer my name is mike 262-344-6906 thank you

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