declining treatment

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I am diagnosed with Stage III aggressive/advance melanoma and doctor wants to start pembrolizumab. I have pre existing ILD and IPF and Palindromic Rheumatism and Raynauds Syndrome (autoimmune conditions), SIADH, and IBS.  I am most concerned about the increased risk of pneumonitis when taking pembrolizumab b/c my lung issues put me at significantly higher risk than average for side effects, esp the pneumonitis.  I feel I would be spending every waking minute reacting to a cough or shortenss of breath--rushing off for CT scans, being treated with high dose steroids and perhaps being hospitalized. I know the cancer will advance faster without treatment, but I do not want to live my last year or two of life with the constant threat of side effect emergencies.

  • Hi  

    It's natural to be worried about possible side effects when you're about to start a new drug. I don't have any experience with pembro but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    I know there are lots of people in the group who are on this drug so I've done a search in the group and found these posts which mention pembro for you to take a look at.

    As the side effect that worries you the most is pneumonitis, I've searched that too and found these posts where people have mentioned it.

    Wishing you all the best with whatever you decide to do.

    Anne

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"