Husbands treatment stopped

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Hello 

My husband is 46 and was diagnosed with NSCLC last year. He has PDL of 90% but is stage 4. Before his diagnosis he suffered with psoriasis for many years and was on adalimumab which held it at bay. He had to come off that when he started Keytruda as apparently it can make it less effective- although we had very conflicting advice about this. He now appears to have immunotherapy related severe joint pain, possibly linked to his psoriasis and so they have paused Keytruda whilst he has some steroids. I’m confused and anxious because we don’t want to stop the treatment as he’s had a goos response (however I understand why) but surely when they restart the joint pain will just come back. We really want him back on the Keytruda. I guess I’m just asking for some reassurance if people have had similar the oncologists we have all seem devoid of normal social skills and are either rude or act like they are from another planet where people don’t communicate with words.

  • Hi Margot,

    I was on Keytruda and among my side effects I had pain in my right shoulder (diagnosed as bad bursitis by the GP who recommended surgery) and left elbow and right hip. My knees weren't too happy either. Certainly bad enough to stop some of my previous usual activity. I was fine as long as I didn't move much, but then if I hadn't moved the pain was much worse when I did move. I used 400mg Ibuprofen to take the edge off (careful! not on an empty stomach!) and told myself at least I'm alive to feel this bad instead of pushing up daisies. Since coming off Keytruda (treatment was successful - yay!) those pains gradually subsided and are now gone.

    90% - wow! That's good, I was only 80% and it saved me.

    Hope things work out well for you and your husband.

    kind regards
    Steve

  • Oh that’s fantastic Steve I’m really pleased for you! Can I ask what stage you were? We have been told my husband’s is only treatable which was such a shock as we had no idea. We are just taking each day at a time, hoping for the best and planning for the worst. Take care of yourself x 

  • Hi Margot,

    I was stage 4, the spread from the lung was a brain tumour. I had surgery for the brain, they did the genetic tests on what they dug out, and with those results they went straight onto Keytruda immunotherapy.

    I kept my mind straight by not worrying about a cure, just wanted to survive until the next treatment came along. Sort of low expectations but with high hopes.

    kind regards,
    Steve

  • Wow that’s amazing, and I totally get what you mean about low expectations but high hopes. Sorry for being nosy but did you have lymph node involvement? I think I’m actually struggling with all this more than he is! 

  • Hi Margot,

    Oh gosh, no such thing in here as nosey as far as I feel, we're all here to be as open and helpful as we can.

    My lymph nodes showed up as enlarged between my lungs, but the Keytruda took care of them and they went back to normal. Not sure if that was because of the immunotherapy or if it was because the tumour was shrinking. Much later on when I needed a lobectomy they removed some nearby lymph nodes to check, and they were clear.

    kind regards
    Steve