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.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

Hello @nang and welcome to Mayo Clinic Connect. I am sure the pause on your husband's treatment can feel uncertain. Guessing by what you've shared, it seems as though there is a possibility that due to his weightless, there were maybe concerns about his body's ability to handle the next round without a break.

Is this essentially what the doctors told you? Did they share what milestones or changes they would want to see him make before considering restarting?

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@amandajro

Hello @nang and welcome to Mayo Clinic Connect. I am sure the pause on your husband's treatment can feel uncertain. Guessing by what you've shared, it seems as though there is a possibility that due to his weightless, there were maybe concerns about his body's ability to handle the next round without a break.

Is this essentially what the doctors told you? Did they share what milestones or changes they would want to see him make before considering restarting?

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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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@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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@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.

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@colleenyoung

@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.

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I couldn't agree more, we deserve and have that right, after all it is my husband's life! I should check in to see if they have a symptom management nurse or a social worker. That would be extremely helpful. I'm guessing they do not but I will definitely check. I do appreciate the link you provided, after Keytruda and the members who might be able to help out. I will reach out to them. It's nice to have someone listen, to try and help and to provide us with support. I do appreciate your input. Thanks for your help.

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@nang

I couldn't agree more, we deserve and have that right, after all it is my husband's life! I should check in to see if they have a symptom management nurse or a social worker. That would be extremely helpful. I'm guessing they do not but I will definitely check. I do appreciate the link you provided, after Keytruda and the members who might be able to help out. I will reach out to them. It's nice to have someone listen, to try and help and to provide us with support. I do appreciate your input. Thanks for your help.

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Nan, I'm checking in. How are you and your husband doing? Any updates?

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My husband starting feeling worse after being off the treatment for two weeks. He called his oncologist and they told him to call his regular doctor (who he hasn't seen since last December and they haven't been involved in his treatment process)! So I called the oncologist office asking what the protocol was? Why was he referred to his general practitioner? I took your suggestion and asked if they had an assigned symptom manager nurse or an oncologist social worker. They said no. So I asked to speak with an office manager. Bottom line, they got us in to see another oncologist since ours was out of the country. This oncologist started my husband on steroids to help dial back the side effects and they seem to be helping. We go back and see him in 10 days. This oncologist spent time with us and explained things the other one NEVER did. I hope this opens my husband's eyes on our he should be treated.

Thank you for checking up on us.

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@nang

My husband starting feeling worse after being off the treatment for two weeks. He called his oncologist and they told him to call his regular doctor (who he hasn't seen since last December and they haven't been involved in his treatment process)! So I called the oncologist office asking what the protocol was? Why was he referred to his general practitioner? I took your suggestion and asked if they had an assigned symptom manager nurse or an oncologist social worker. They said no. So I asked to speak with an office manager. Bottom line, they got us in to see another oncologist since ours was out of the country. This oncologist started my husband on steroids to help dial back the side effects and they seem to be helping. We go back and see him in 10 days. This oncologist spent time with us and explained things the other one NEVER did. I hope this opens my husband's eyes on our he should be treated.

Thank you for checking up on us.

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I'm glad you were persistent and got the help and attention your husband needed. Might you be able to transfer your husband's care to this new oncologist?

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@colleenyoung

I'm glad you were persistent and got the help and attention your husband needed. Might you be able to transfer your husband's care to this new oncologist?

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That's what I am hoping. This oncologist took care of my mother a year or so ago before she passed away and he is very thorough and kind. My husband likes to go with the flow but I believe I have my him ready to transfer.

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Hi Nan,
I am so sorry to hear of what your husband is going through with Keytruda! Four years ago, my husband had a very similar situation with Keytruda which he was given for his stage 4 lung cancer. He almost died from the Keytruda. He lost about 30 lbs. and several pants sizes. He had very little appetite and couldn’t keep hardly any food down. The cancer doctor didn’t even see my husband when he was so sick. She merely suggested a medication to treat nausea. The insurance company had just approved another 6 months of Keytruda treatment. My husband said he wasn’t going to have any more Keytruda infusions. This did not set well with the cancer doctor. (The insurance company was paying $25,000 per infusion!)

I made an emergency appointment with our primary care doctor who realized that my husband had pancreatitis which is a side effect of Keytruda. The doctor referred him to a specialist who gave him medication to treat the pancreatitis. In a few days, my husband was able to eat again and started to recover. We changed cancer doctors and he and has been doing very well with no more Keytruda. He’s 81 and is very active; leaf blowing, taking the garbage down, fixing breakfast, lunch and dinner, lifting the heavy snow tires into the car trunk, repairing electrical items and driving the car. The new cancer doctor listens to what my husband wants to do for his cancer and respects that.

We have to keep in mind that it is our bodies and our money. The doctors work for us.
I hope everything goes well for your husband! I’ll remember you both in my prayers.
PML

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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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