• I desperately need more info about ALK. Can anyone help me?

    Asked by jhill84 on Wednesday, October 3, 2012

    I desperately need more info about ALK. Can anyone help me?

    6 Answers from the Community

    6 answers
    • nancyjac's Avatar
      nancyjac

      What information do you need?

      almost 5 years ago
    • jhill84's Avatar
      jhill84

      I am 27 and I was diagnosed with lung cancer in July. They removed the right upper lobe of my lung. They said I had stage 2b and that it only spread to two small areas of lymph node which they also removed. When I met with oncologist he ordered testing to determinecause of cancer due to my young age and light smoking history. He said I showed positive for ALK gene and started me on cistplatin and alimta for chemo meds. He said I would not benefit from the oral med due to not having any cancer left in me. Now he is making me go for an MRI to check my brain since he said my case is so rare and ALK usually causes brain cancer as well. Is this true? And how likely are these cells to cause cancer to comeback? Are there any stats out there on long term survival rates? I'm young and scared!

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      Anaplastic lymphoma kinase (ALK) are not cells, but rather an enzyme that is encoded by the ALK gene. ALK lung cancers are found in patients of all ages, although on average these patients may be somewhat younger. ALK lung cancers are more common in light cigarette smokers or nonsmokers, but a significant number of patients with this disease are current or former cigarette smokers. ALK plays an important role in the development of the brain and effects specific neurons in the nervous system.

      ALK can cause a small percentage of neuroblastomas, a childhood form of brain cancer, and even smaller percentage of non small cell lung cancers, and some inflammatory myofibroblastic tumors, but I am not aware of any direct causality between between them.

      Generally survival rates are better for those who are ALK+ since they can be treated with an ALK inhibitor such as CHOP chemotherapy. Some studies show a survivral rate of 80% but of course there are many other potential more contributing factors to survival statistics than being ALK+

      If you google Anaplastic lymphoma kinase you will find tons of information. This site is as good as any to start with:
      http://www.lymphomainfo.net/articles/non-hodgkins-lymphoma/anaplastic-lymphoma-kinase

      almost 5 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      I'm not familiar with this, but was touched by your "I'm young and scared" comment. It just reached out and grabbed me. I'm not young (69)... but I'm, thank God 7 years older than when I was diagnosed with Stage IV Ovarian Cancer. Listen to other regarding the cancer .. But place yourself in God's hands for the fear. I know I lay there as they ran tests and realized what they were finding and knew how deadly late stage ovarian cancer is/was. I silently asked God to Lead me... I told him I'd follow him anywhere (for I 'knew' I was dying). Then I told him how scared I was.. for My children, step children and grandchildren flashed through my mind. My beloved husband....his pain was worse than mine.... I lifted my right hand up and I tell you He took my hand... My fear left me.. instantly. Ask Him to take your fear, and guide you to where He wants you to be. That's what I did, and I'm here.. alive, cancer free and trying to help others... Oh.. and I danced at my grandson's wedding and have held two great grandchildren in these seven years... I smile because I am happy!

      almost 5 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      I'm not familiar with this, but was touched by your "I'm young and scared" comment. It just reached out and grabbed me. I'm not young (69)... but I'm, thank God 7 years older than when I was diagnosed with Stage IV Ovarian Cancer. Listen to other regarding the cancer .. But place yourself in God's hands for the fear. I know I lay there as they ran tests and realized what they were finding and knew how deadly late stage ovarian cancer is/was. I silently asked God to Lead me... I told him I'd follow him anywhere (for I 'knew' I was dying). Then I told him how scared I was.. for My children, step children and grandchildren flashed through my mind. My beloved husband....his pain was worse than mine.... I lifted my right hand up and I tell you He took my hand... My fear left me.. instantly. Ask Him to take your fear, and guide you to where He wants you to be. That's what I did, and I'm here.. alive, cancer free and trying to help others... Oh.. and I danced at my grandson's wedding and have held two great grandchildren in these seven years... I smile because I am happy!

      almost 5 years ago
    • carm's Avatar
      carm

      Hello, My name is Carm and I am an oncology/end of life nurse. I will send you my email address privately and perhaps I can help you find the information you seek,

      almost 5 years ago

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