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PCW

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  1. Sad
    PCW got a reaction from LouT in Newly diagnosed with ALK mutation   
    Hi Everyone!
    It’s been 6 months since I posted last. Would like to give a little update. I was diagnosed with stage IV NSCLC more than a year ago. Given 4 cycles of triplets starting in May. After that Carbo was dropped and I was continued with Keytruda and Alimta. Till I developed a skin rash and my ca19-9 kept on rising . My oncologist switched me to taxotere every 21 days as a second line treatment.  Carbo was put back in the regimen about 2 months ago: carbo and Taxotere day one followed by Taxotere a week later . Each cycle given every 28 days. 
    unfortunately, my ca19-9 has been fluctuating. The latest reading is 140. My oncologist suspected that it might due to the 11 lesions in my liver(largest one is more than an inch). Meanwhile, all other areas of metastasis seemed to be shrinking including my left lung(started from the right), ileum, sacrum,  thoracic spine area and my left trachea. I have no or very low PDL 1 from my biopsy a year ago. Last week, my oncologist informed me that they found an ALK mutation in  the Guardant test that I took 2 months back. Now the plan is, continue with carbo/Taxotere until my insurance approves the use of Lorlatinib, a third generation AlK inhibitor. So, this has been quite  a year for me, with all the ups and downs with my treatment. By the way hope everyone is doing well! Meanwhile would appreciate any feedback. And I have survived stage iv for more than a year!
                  PCW (Paul)
  2. Thanks
    PCW reacted to Tom Galli in Newly diagnosed with ALK mutation   
    Paul,
    Surviving Stage IV disease for any length of time is something to celebrate. You've already beat the mean survival rate so why not make the 5-year mark and beyond!
    I'm happy they discovered the ALK mutation and that it is a treatable form. I don't know much about Loriatinib. Perhaps someone with experience can chime in and give use their insight.
    Stay the course.
    Tom
  3. Sad
    PCW got a reaction from Tom Galli in Newly diagnosed with ALK mutation   
    Hi Everyone!
    It’s been 6 months since I posted last. Would like to give a little update. I was diagnosed with stage IV NSCLC more than a year ago. Given 4 cycles of triplets starting in May. After that Carbo was dropped and I was continued with Keytruda and Alimta. Till I developed a skin rash and my ca19-9 kept on rising . My oncologist switched me to taxotere every 21 days as a second line treatment.  Carbo was put back in the regimen about 2 months ago: carbo and Taxotere day one followed by Taxotere a week later . Each cycle given every 28 days. 
    unfortunately, my ca19-9 has been fluctuating. The latest reading is 140. My oncologist suspected that it might due to the 11 lesions in my liver(largest one is more than an inch). Meanwhile, all other areas of metastasis seemed to be shrinking including my left lung(started from the right), ileum, sacrum,  thoracic spine area and my left trachea. I have no or very low PDL 1 from my biopsy a year ago. Last week, my oncologist informed me that they found an ALK mutation in  the Guardant test that I took 2 months back. Now the plan is, continue with carbo/Taxotere until my insurance approves the use of Lorlatinib, a third generation AlK inhibitor. So, this has been quite  a year for me, with all the ups and downs with my treatment. By the way hope everyone is doing well! Meanwhile would appreciate any feedback. And I have survived stage iv for more than a year!
                  PCW (Paul)
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