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slmcclister_12
slmcclister_12 CSN Member Posts: 1 *
in Lung Cancer #1

My husband has been diagnosed with stage 4 non small cell lung cancer that has spread to his bones. He was put on capmatinib. From the last pet scan the drug was working but one of the side effects of the drug was swelling. He went to his family doctor about the swelling and the family doctor advised him to stop taking the drug until after Christmas. I’m afraid that he won’t be here that long. He started taking Ivermectin but I don’t know if that is working. He is now to the point where he does not feel hungry and has to force down food. He has lost all interest in everything he used to like to do. I don’t know what to do at this point.

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  • eDivebuddy
    eDivebuddy CSN Member Posts: 157 Member
    #2

    The PCP recommendation is very concerning.

    Edema (swelling) from capmatinib is well known, but it is almost never a reason to stop treatment unless it is directly harming the heart, kidneys, or lungs. Telling him to just “hold it until after Christmas” is possibley reckless. These drugs clear quickly from the body, and pausing them without oncology’s direction gives the cancer time to progress or develop resistance. That is not something you gamble with.

    The oncology team should be the one making these calls. They see these side effects every day and know when to adjust the dose, switch to another drug, or only if absolutely necessary pause treatment. Most centers have a 24/7 number for side effects, and they can guide you far better than primary care.

    Before anyone talks about stopping a TKI, the usual steps are:

    Compression socks, leg elevation, and walking or exercise

    Salt restriction and nutrition checks, since low protein can worsen edema

    Medications such as diuretics or sometimes short courses of steroids

    Referral to a lymphedema therapist or nurse for manual lymphatic drainage massage which helps move fluid back toward the heart

    Oncology directed dose reduction or switching to a different TKI if side effects are severe

    Please consult with his oncology care team before moving forward. The universal outcome for untreated lung cancer is far worse than nearly all treatment side effects.

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