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Taken off of Keytruda/Lenvima for stage 4 RCC

Kidney Cancer | Last Active: Feb 8, 2023 | Replies (11)

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@nang

Amanda, thank you for responding. His doctor never shares much with us so no, he did not explain anything except to say we will have another CT scan and then meet with his nurse in July. He said we should take a break and then said maybe we should get a Kit Kat Bar. Yes, he said that. In the past when I ask questions he's gotten defensive and dismissive. I'm guessing between my husband's weight loss and his inability to function with normal active, because of his weakness, made the doctor think we should stop? IDK. I get the feeling that this treatment is new for them in treating kidney cancer and that they don't even know what to expect. Feels like we are in a zone where nobody knows what's going on. Doesn't seem to be a clear answer for most questions, hence my reaching out via this connect site. Thanks again for your response.

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Replies to "Amanda, thank you for responding. His doctor never shares much with us so no, he did..."

@nang, this sounds infuriating to not have your questions answered and even dismissed. There is a related discussion in the Lung Cancer group that you might wish to follow:
- After Keytruda, what's next? https://connect.mayoclinic.org/discussion/keytruda-1/

Fellow members @ta52 @richcolleen @loula @carebears91 may be able to share their experiences with changing medications and dealing with non-answers.

Nan, does your husband have an assigned symptom management nurse or oncology social worker who could help get you the answers you need and deserve? It's your right to understand the goal of treatment, how it works and what the plan is.