63 year-old male, previously very healthy and active. I had a complete nephrectomy of my right kidney in December 2024, with a diagnosis of Stage 3a CCRCC. After 12 weeks of healing, I started IV infusions of Keytruda 400mg every 6 weeks. First reactions were tingling/numbness in my fingers and hands, fatigue, and joint stiffness. Each successive cycle of immunotherapy has either added more side effects or upped the level of intensity of the side effects I already had. I also haven’t slept through the night since before my surgery.
Other side effects have been itchiness, brain fog, diarrhea, nausea, and irritability. Since I’m a dentist by trade, I’ve been unable to work with the neuro affects to my hands and fingers. Fortunately I have a Long Term Disability policy that kicked in. Latest side effect is severe knee pain when I crouch down and try to stand back up.
On the positive side, I have been allowed to travel because my immune system is turbocharged, not suppressed. Meds have helped with pain, nausea, and diarrhea. And the side effects are worth it because the Keytruda will increase my 5 year survival rate by 7% or so. I’ll do whatever I can to keep going.
Feel free to contact me directly if you want to get more details. I’m happy to share my experience with anyone who is going through, or thinking of going through, the same
That’s a good question. CT scan 4 months after surgery revealed a small (8mm) growth in the space where my right kidney used to be. I had just started on Keytruda at that point. My last scan in December showed no enlargement of that growth, so I’m cautiously optimistic the Keytruda is responsible for keeping it from growing more. My next imaging is in March, which I don’t expect to reveal anything of concern. My oncologist is having me get imaging every 3 months for the first year in large part because of that growth, and also because there was zero evidence of a tumor in my kidney in 2022, yet I developed one the size of a tennis ball in 2024.
I would say despite all the side effects, taking Keytruda has been beneficial for me. While I don’t love the way it makes me feel or the limits it’s imposed on my life, it hasn’t prevented me from spending time with my kids and grandkids. I also haven’t had any thyroid issues which can be prevalent in some patients. My neurological effects are manageable. The diarrhea and nausea aren’t too wonderful, but if that's part of the price I pay to stick around longer, I’ll take it.
Mine was stage 4 Upper Tract urethlial cancer (UTUC) that had spread to my lungs as 5 separate nodules. I had my right kidney removed due to a very large tumor in July, 2024. I started a three week cycle of Padcev (week 1 and 2) and Katruda ( week 1 only) in August,2024. I have no infusion in week 3 of cycle. This will last 2 years- unless side effects dictate otherwise.
I have had a profound recovery. The cancer is no longer showing up in my ct scans anywhere in lungs, bladder, abdomen or pelvis or any organs after 1,5 years of treatment.
Side effects- I do have minor neuropathy in the tips of my toes and itching.
I know this isn’t pertaining to renal but I felt it was close enough to include here.
@surbach50, your experience is definitely relevant. What an amazing success of no evidence of cancer when it was wide spread (stage 4).
Am I understanding correctly that you remain on immunotherapy treatment until August 2026 (2 years total)? Was dosing adjusted because of the developing neuropathy?
@surbach50, your experience is definitely relevant. What an amazing success of no evidence of cancer when it was wide spread (stage 4).
Am I understanding correctly that you remain on immunotherapy treatment until August 2026 (2 years total)? Was dosing adjusted because of the developing neuropathy?
@colleenyoung thank you guys for sharing. Just got diagnosed last month. I’m just a couple weeks in to keytruda and axitinib. So far except for elevated blood pressure I’m doing fine. Of course no results yet but will let you guys know about my experience.
CT and MRI (9/25) showed my cancer had returned and decided to grow on my liver. Because the tumor was in an odd place it was recommended I try Keytruda and Lenvima to see if it would shrink which would make surgery easier. My scans from late January show the tumor went from 4.9 cm to 3.3 cm. Some other issues have developed so surgery is being delayed but I’m still on both meds.
I am 70 yrs old Diagnosed with renal cell carcinoma in 2012. Right kidney removed. 5 years of scans with no recurrence. Scans stopped. 5 years later metastatic to pancreas. Had radiation and was fine for 1 year. Then metastatic to liver. Also radiation. One year later metastatic to T5 and T7. Radiation again. And 6 months later metastatic to sits bone, T7, and liver. Started ketruda and Lenvatinib Jan 6. Blood pressure spiked to 215/107. And had back pain. Hospital found my T7 had compression fracture. The didn’t know why BP so high. I’ve had a lot of different BP meds to stabilize the BP. Other side effects have been weakness mouth sores nausea so weak and sick we paused lenvatinib for 10 days. Last week they did. Kyphoplasty to. Stabilize the vertebrae at T7. Then restarted lenvatinib. 2 day later I had a mild heart attack and had two stints placed. I’m off lanvetinab and Keytruda at the moment. Hopeful to resume. Although I currently feel pretty awful from it all. I have amazing support from family. My husband is very good at taking care of me and our 4 dogs. I’m blessed.
@jeanne1955, I'm sorry to hear that you're having such a rough time with heart issues and mets to your spine. You sound like you are able to maintain good spirits. I bet your husband and 4 dogs help. They seem to know when a person needs extra attention, support and cuddles.
How is your recovery from the kyphoplasty going? Have they managed to get the blood pressure issue under control?
I’ve suspended Keytruda after my first infusion because of the severe debilitating side effects. Have scans March 11 and then decide on the path forward.
@surbach50, your experience is definitely relevant. What an amazing success of no evidence of cancer when it was wide spread (stage 4).
Am I understanding correctly that you remain on immunotherapy treatment until August 2026 (2 years total)? Was dosing adjusted because of the developing neuropathy?
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@ebdent88 How are you doing now? Any shrinkage of tumor? Would you have same treatment again? Thank you.
That’s a good question. CT scan 4 months after surgery revealed a small (8mm) growth in the space where my right kidney used to be. I had just started on Keytruda at that point. My last scan in December showed no enlargement of that growth, so I’m cautiously optimistic the Keytruda is responsible for keeping it from growing more. My next imaging is in March, which I don’t expect to reveal anything of concern. My oncologist is having me get imaging every 3 months for the first year in large part because of that growth, and also because there was zero evidence of a tumor in my kidney in 2022, yet I developed one the size of a tennis ball in 2024.
I would say despite all the side effects, taking Keytruda has been beneficial for me. While I don’t love the way it makes me feel or the limits it’s imposed on my life, it hasn’t prevented me from spending time with my kids and grandkids. I also haven’t had any thyroid issues which can be prevalent in some patients. My neurological effects are manageable. The diarrhea and nausea aren’t too wonderful, but if that's part of the price I pay to stick around longer, I’ll take it.
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5 Reactions@surbach50, your experience is definitely relevant. What an amazing success of no evidence of cancer when it was wide spread (stage 4).
Am I understanding correctly that you remain on immunotherapy treatment until August 2026 (2 years total)? Was dosing adjusted because of the developing neuropathy?
@colleenyoung thank you guys for sharing. Just got diagnosed last month. I’m just a couple weeks in to keytruda and axitinib. So far except for elevated blood pressure I’m doing fine. Of course no results yet but will let you guys know about my experience.
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3 ReactionsI'm seeing my oncologist this Wednesday and am going to ask about the immunotherapy treatment to try first since I was just diagnosed January 1st.
CT and MRI (9/25) showed my cancer had returned and decided to grow on my liver. Because the tumor was in an odd place it was recommended I try Keytruda and Lenvima to see if it would shrink which would make surgery easier. My scans from late January show the tumor went from 4.9 cm to 3.3 cm. Some other issues have developed so surgery is being delayed but I’m still on both meds.
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1 Reaction@jeanne1955, I'm sorry to hear that you're having such a rough time with heart issues and mets to your spine. You sound like you are able to maintain good spirits. I bet your husband and 4 dogs help. They seem to know when a person needs extra attention, support and cuddles.
How is your recovery from the kyphoplasty going? Have they managed to get the blood pressure issue under control?
@bam3540, I hope you saw @ebdent88's helpful reply to your questions here: https://connect.mayoclinic.org/comment/1514090/
Bam, have you recently been diagnosed with kidney cancer? Is immunotherapy being suggested for you? How are you doing?
I’ve suspended Keytruda after my first infusion because of the severe debilitating side effects. Have scans March 11 and then decide on the path forward.
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1 Reaction@colleenyoung…yes I will remain on treatment till August, 2026. Dosing for petruda was adjusted due to neuopathy in my toes.
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