Taken off of Keytruda/Lenvima for stage 4 RCC

Posted by NanG @nang, Jun 3, 2022

My husband was diagnosed with stage 4 kidney cancer in October 2021. He is in his mid 60’s. It had metastasis to his left lung but the tumors were small so the doctor thought he was a good candidate for surgery to remove his whole left kidney. Then, in November, they started him on the immunotherapy drug Keytruda every 3 weeks and target therapy Lenvima, in a pill form, every day. The two scans he’s had since his treatment shows the tumors in his lungs have shrunk to the point of not seeing them on the CT scan. A week ago we went in for another Keytruda transfusion. My husband no longer had an appetite (lost an additional 7 pounds in 3 weeks for a total of 35 pounds), and was so weak all he was doing was lying down, shortness of breath and headaches. The doctor said he should take a break from his treatment so everything stopped. Now we wonder what’s next? Our next appointment with the doctor and for lab work is not until the end of July. The whole experience feels like no one knows what to expect or what comes next. Does anyone have a similar experience? We just don’t know what to expect or what will happen next. Thank you.

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@csharpe38

My wife was diagnosed stage 4 kidney cancer about 3 months ago, she's 52. She has a mass on her kidney and its in several lymph nodes. She's been doing the immunotherapy as well. She has another scan next month so hopefully some improvements have been made. Just seems like we're spinning our wheels with this. Her emotions are up and down and really the doctors haven't really given any hope of this even working. Basically told her this is what she has to look forward too. Kinda hard to stay positive.

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Welcome @csharpe38. It can be hard to stay positive. And sometimes "positive" isn't the frame of mind we need when faced with harsh reality. I prefer the phrase "reframe hope". There is always hope, but it can be hard to align hope within the limitations of what is in front of us.

This article helped me understand hope (and denial) in the face of advanced cancer:
- What is hope? https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Emotional+Health/Hope+and+Denial.aspx

Yes, you can hope for improvements. Hope that she remain pain free. Hope to find joy in every day.

These may sound like platitudes. I don't mean it that way and don't want to sound trite. One can reframe hope one small step at a time. I'm not saying it's easy.

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