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Keytruda? Totally shocked & scared!

On June 25th my anniversary I was diagnosed with stage 4 non small cell lung cancer. It is in my lung and lining and now the think my liver. I'm doing Keytruda. Anyone have some advise?

  1. Hi TinaH,

    Thanks so much for sharing with us. A new lung cancer diagnosis can be very scary! You may find this information on Keytruda helpful in addition to these articles that have helpful tips especially for those newly diagnosed:

    Please know that you are not alone, and that we and the community are here for you and thinking of you.

    Margot, Team Member

    1. I am stage Iv with the high level of PDL1. I was diagnosed in August this year. I was in bad shape. Fluid on the lung, loosing weight, tired, hardly eating or drinking, and working long hard hours as a dept. Mgr at walmart. As I got to the point of hardly breathing I finally decided to see the doctor. Shocking news! Then it was drainage tubes that hurt like hell. It seemed every other day I was poked, scanned and my prognosis didnt sound good. I took time off from work and slept and forved myself to eat healthy. I started Keytruda and will soon have my 5th treatment. There are side effects but we are keeping them in control. The fluid in lung is almost gone. I feel better now than I did a year ago. I do follow a healthy diet and do my best to avoid sugar and salt. I do tend to have swelling in legs. I am hoping this Keytruda will do the trick as the doctor says no chemo or radiation. Cancer is in both lungs and lymph nodes. Right now I feel very positive. I am hoping Keytruda will work for you.

    2. Thank you so much for sharing donmarie; as you say that must have been a shock! Glad that you did go to see the doctor! It is so great to hear that you are feeling better, and it sounds like you have done a lot, like relaxing and eating healthy, to help as well. Please do keep us updated! Wishing you all the best. Warmly, Margot, Team

  2. TinaH,

    Obviously, you have had almost three months to digest information about your situation, but that does not always mean you have the information you need or the support you want. We are here to listen and support you online, but you should check with your oncologist's office to see if there is a good support group locally, as well; sometimes you will find other patients in your area who are using the same treatment you are and it can be helpful to compare notes.

    Beyond that, if you have not already, you should talk with your oncologist about getting a genetic panel done. If there was a good biopsy of your tumor, it is usually possible to use that tissue for the profile. Another option could be a liquid biopsy that can check for specific markers. Keytruda works exceptionally well for some patients, but you should know that there are other options available for treatment as well. And there are also numerous trials being done, too.

    My advice to you is to focus on enjoying your days and remain confident in your future -- and do what you can to remain healthy and active. As a patient, I went straight to chemotherapy -- immunotherapies were not readily available as first-line treatments when I was diagnosed and I missed the window on a trial. After 2.5 years, I switched from chemo to a targeted therapy and I am waiting to see how it works. Keytruda may be in my future arsenal, but there are other new drugs coming. Some doctors are suggesting that lung cancer is becoming more like a chronic condition that can be managed well for many years -- and more and more patients seem to be effectively cured.

    Wishing you the best,
    Jeffrey, team member

    1. Thank you so much for sharing. My mother has a very similar case to your's. She has an extremely high level of the PDL-1 mutation and diagnosed with stage IV NSCLC. She also is in bad shape due to the fluid around her pericardial region and around her lungs which makes it extremely hard for her to breathe. She had drainage tubes as well inserted surgically to continuously drain the reaccumulating fluid. I'm wondering if you could give a little bit more insight on how your treatment is going so far. My mother will be receiving her third treatment of Keytruda tomorrow and out of nowhere her left leg from her thigh down swelled up and has left me with a lot of concern. Also just curious as to how your response to treatment has been so far. My mother's prognosis didn't seem well either.

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