Colleen Young, Connect Director | @colleenyoung | Feb 15 2:44pm
@bel13, I pulled your question into its own discussion. It's a good one. I'm taging a few members like @beebe@lhoy@josevaz77@koke@ebdent88@famcare@oceanm1 and others who can share their who have experience with immunotherapy for renal cell carcinoma.
@bel13, as we wait for others to join the discussion, can you share a bit more? What stage is your cancer? Have you started immunotherapy? Did you have surgery?
Had lt kidney removed May2024. Had chemo and followed up with immunotherapy with Keytruda. Have had about 1 year of Keytruda and have had no negative effect. Started with Keytruda every 4 weeks and CT scans occasionally during this time. Now on Keytruda every 6 weeks with CT scans . Have had no negative effects from Keytruda.
@bel13, I pulled your question into its own discussion. It's a good one. I'm taging a few members like @beebe@lhoy@josevaz77@koke@ebdent88@famcare@oceanm1 and others who can share their who have experience with immunotherapy for renal cell carcinoma.
@bel13, as we wait for others to join the discussion, can you share a bit more? What stage is your cancer? Have you started immunotherapy? Did you have surgery?
@colleenyoung my 75 yr old husband was a research study candidate for laser and Jelmyto finally having his right kidney, ureter and partial bladder removed Dec. 14, 2025. He just had his first immunotherapy of Keytruda on Feb. 12. He took one Claritan pill a few hours before the infusion. Thankfully he has not had any negative side effects. Praying this continues as he is scheduled for an infusion every 21 days for a year. This may change if scans come back clear. He is back to weedeating around our mountainous land.
Had lt kidney removed May2024. Had chemo and followed up with immunotherapy with Keytruda. Have had about 1 year of Keytruda and have had no negative effect. Started with Keytruda every 4 weeks and CT scans occasionally during this time. Now on Keytruda every 6 weeks with CT scans . Have had no negative effects from Keytruda.
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.
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
@bel13, I pulled your question into its own discussion. It's a good one. I'm taging a few members like @beebe@lhoy@josevaz77@koke@ebdent88@famcare@oceanm1 and others who can share their who have experience with immunotherapy for renal cell carcinoma.
@bel13, as we wait for others to join the discussion, can you share a bit more? What stage is your cancer? Have you started immunotherapy? Did you have surgery?
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.
Yes. I won't repeat everything involving my kidney cancer, since I have posted about it many times. Just a brief post on it: I was diagnosed with kidney cancer March of 2023. Urologist suggested total nephrectomy of the effected kidney, but because of my age I opted out of surgery and was referred to oncologist. I have had 19 infusions of only Keytruda in a period of 21 months; my last infusion was in November of last year. I had a CT scan the 10th of this month. The scan showed that since the last scan of July last year there has been no change: the two scans done in the last seven months showed that the malignant lesion is gone, all organs appear normal and the cancer has not spread. Now I have to decide whether to continue because of some side effects and also due to the fact that 24 months is the maximum time frame suggested for treatment. But Keytruda alone has obviously done the job in my case. I will be 84 in two months and am happy that the treatments have allowed me to live a normal life.
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@bel13, I pulled your question into its own discussion. It's a good one. I'm taging a few members like @beebe @lhoy @josevaz77 @koke @ebdent88 @famcare @oceanm1 and others who can share their who have experience with immunotherapy for renal cell carcinoma.
@bel13, as we wait for others to join the discussion, can you share a bit more? What stage is your cancer? Have you started immunotherapy? Did you have surgery?
Stage 3b. Left kidney removed, weighed 4 pounds. Right kidney stable. Keytruda first infusion was debilitating. Stopped Keytruda for now.
Had lt kidney removed May2024. Had chemo and followed up with immunotherapy with Keytruda. Have had about 1 year of Keytruda and have had no negative effect. Started with Keytruda every 4 weeks and CT scans occasionally during this time. Now on Keytruda every 6 weeks with CT scans . Have had no negative effects from Keytruda.
@colleenyoung my 75 yr old husband was a research study candidate for laser and Jelmyto finally having his right kidney, ureter and partial bladder removed Dec. 14, 2025. He just had his first immunotherapy of Keytruda on Feb. 12. He took one Claritan pill a few hours before the infusion. Thankfully he has not had any negative side effects. Praying this continues as he is scheduled for an infusion every 21 days for a year. This may change if scans come back clear. He is back to weedeating around our mountainous land.
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2 Reactions@swedegirl54 wonderful! We pray my husband's experience continues like yours.
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2 ReactionsMine 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.
-
Like -
Helpful -
Hug
4 Reactions63 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
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3 Reactions@colleenyoung
Family member stage 4
Yes started immuno
Surgery not an option
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4 ReactionsI 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.
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Helpful -
Hug
5 ReactionsYes. I won't repeat everything involving my kidney cancer, since I have posted about it many times. Just a brief post on it: I was diagnosed with kidney cancer March of 2023. Urologist suggested total nephrectomy of the effected kidney, but because of my age I opted out of surgery and was referred to oncologist. I have had 19 infusions of only Keytruda in a period of 21 months; my last infusion was in November of last year. I had a CT scan the 10th of this month. The scan showed that since the last scan of July last year there has been no change: the two scans done in the last seven months showed that the malignant lesion is gone, all organs appear normal and the cancer has not spread. Now I have to decide whether to continue because of some side effects and also due to the fact that 24 months is the maximum time frame suggested for treatment. But Keytruda alone has obviously done the job in my case. I will be 84 in two months and am happy that the treatments have allowed me to live a normal life.
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3 Reactions