Anyone have success with immunotherapy for kidney cancer?

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 What a history you have! Yet, you are blessed. I am blessed to read this as I am facing a cancer diagnosis. I believe that I may only have a fraction of your conditions. Still if I must have diagnosis after diagnosis as you have had, I pray for the grace to always feel that peace that passes all understanding. God bless you. Your four dogs and husband sound delightful!! We have one dog and she is a delight. My husband does a good job looking out for me.

Sorry to hear that. My first infusion was keytruda and I was miserable. Arthritis flare ups. Prednisone helped. Due to that I am on Opdivo and Cabometyx with much fewer side effects. I can tolerate the morning stiffness and fatigue.
Hope you have a better experience with your next step.

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.

I’m happy to share my experience with anyone who is going through, or thinking of going through, the same

@ebdent88 Hello Ebdent88, so glad to have found your post. My hubby (54) has recently been diagnosed with Stage 3, Grade 1 ccRcc ~ Yay!!! His tumor is quite large (12cm) so they are first trying to shrink it via the protein inhibitor and immunotherapy route. 2nd treatment was on Thursday and so far his side effects are mainly exacerabated joint pain (he's lucky enough to have been suffering with that already) and occasional short-lived chills, brain fog and some fatigue.

According to Docs his tumor is contained within itself, no margins no spreading elsewhere. He's a big dude and it's a big tumor so Surgeon said straight outta the gate he'd want to remove the entire kidney. Less worry for bleeding afterwards and, heck, he has another one (He was being 'funny' but direct which I can appreciate)

I guess I'm just reaching out to compare notes with folks going through similar experiences with this exact type of Kidney Cancer as I know my hubby would not. He's the guy to literally slap a bandaid on cancer and call it "good to go"

If you or anyone else is reading this post, they have hubby on Ipilimumab 50mg and Nivolumab 40mg. Just had 2nd treatment and I believe they re-test tumor size after 4th treatment and reassess situation. I really really really really don't want him to undergo a kidney removal - yea, I know it's doable but still.

Just wanted to introduce myself, hopefully share stories/notes with others who are in similar situations and/or or taking the above mentioned drugs and your experiences with them.

Hello, my name is Jennifer and I'm addicted to my husband Tom =) Blessings to everyone here and may your journeys be positive ones

@ebdent88 Hello Ebdent88, so glad to have found your post. My hubby (54) has recently been diagnosed with Stage 3, Grade 1 ccRcc ~ Yay!!! His tumor is quite large (12cm) so they are first trying to shrink it via the protein inhibitor and immunotherapy route. 2nd treatment was on Thursday and so far his side effects are mainly exacerabated joint pain (he's lucky enough to have been suffering with that already) and occasional short-lived chills, brain fog and some fatigue.

According to Docs his tumor is contained within itself, no margins no spreading elsewhere. He's a big dude and it's a big tumor so Surgeon said straight outta the gate he'd want to remove the entire kidney. Less worry for bleeding afterwards and, heck, he has another one (He was being 'funny' but direct which I can appreciate)

I guess I'm just reaching out to compare notes with folks going through similar experiences with this exact type of Kidney Cancer as I know my hubby would not. He's the guy to literally slap a bandaid on cancer and call it "good to go"

If you or anyone else is reading this post, they have hubby on Ipilimumab 50mg and Nivolumab 40mg. Just had 2nd treatment and I believe they re-test tumor size after 4th treatment and reassess situation. I really really really really don't want him to undergo a kidney removal - yea, I know it's doable but still.

Just wanted to introduce myself, hopefully share stories/notes with others who are in similar situations and/or or taking the above mentioned drugs and your experiences with them.

Hello, my name is Jennifer and I'm addicted to my husband Tom =) Blessings to everyone here and may your journeys be positive ones