Non-Small Cell Lung Cancer ALK+
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In 2015 I began having some shortness of breath when I climbed the stairs to my apartment that I contributed to getting older and not being in shape. As the days went by the shortness of breath became worse and I developed a non productive persistent cough and my voice would intermittently become squeaky sounding. Due to the shortness of breath and the cough that was keeping me up at night I made an appointment with my Primary care physician who diagnosed me with asthma/bronchitis and started me on an antibiotic.

A week went by with no relief and I called the nurse who called in a cough syrup for me, the cough syrup didn’t work so I made another appointment to see the doctor at this visit he changed the antibiotic and put me on an inhaler along with the cough syrup after a couple of weeks with no relief and the shortness of breath becoming worse I went back to the doctor who acted as if it was all in my head so I decided to get an appointment with a pulmonologist which I did.

He ordered a chest xray and had me do a pulmonary function test along with a six minute walk, the xray showed a large pleural effusion in the right lung. The pulmonologist then ordered a thoracentesis where the fluid was drained and sent to the pathologist who confirmed cancer cells in the fluid. I then had a ct scan that showed several tumors in the right lung.

I was sent to see a thoracic surgeon who performed a pleurodesis where they drain and seal the lung and a biopsy was also performed at that time. The biopsy came back positive for stage 4 adenocarcinoma and tested positive for the ALK gene mutation.

I was started on an oral targeted therapy drug, Xalkori (crizotinib) that worked beautifully to stop the growth and spread of the cancer and I did very well on this drug, very few side effects, for 29 months at which time a PET scan showed slight progression and my oncologist switched me to another targeted therapy drug, Alecensa (alectinib).

I have been on it a little over a month now and although I haven’t had my follow up scan yet to see how the new drug is working I feel great and my blood work has been good so far. I will go back in a few weeks for my first scan since beginning the new drug and am praying all is well.

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3 comments on “Non-Small Cell Lung Cancer ALK+

  1. Margot moderator says:

    Hi Cheryn and Vicky,

    Thank you both so much for sharing your diagnosis journeys here. It sounds like you’ve both gone through a lot. Please do keep us updated – we are thinking of you!

    Cheryn, wishing you the best at your scan in a few weeks.

    Vicky, I hope your scan tomorrow goes well.

    Wishing you both the best.

    Warmly,
    Margot, LungCancer.net Team Member

  2. Vicky says:

    I just read this and cannot believe it, but it could be about me. Your story is almost identical to mine, including the doctors putting me on antibiotics and an inhaler. The only difference is we found my cancer after I developed a blood clot and they did a CT scan to check my lungs. I was diagnosed in Jan of 2016 with stage 4 non-small cell, and have tested positive to the ALK gene mutation. I was on Xalkori for 19 months and have recently switched to Alecensa also. My first scan since switching drugs is tomorrow. Thank you for sharing your story…prayers for you!

  3. Cheryn author says:

    Thank you Vicky and to you as well. I would guess we are not the only ones to have been misdiagnosed repeatedly which is sad because our chances of early detection is lowered. I think the medical profession is still not aware that you can get lung cancer even if you don’t smoke and just because you do doesn’t not mean you will get it. There needs to be a lot more education going on in our medical schools regarding this.

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