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Anyone have success with immunotherapy for kidney cancer?
Kidney Cancer | Last Active: Aug 12 12:50pm | Replies (69)Comment receiving replies
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
Replies to "63 year-old male, previously very healthy and active. I had a complete nephrectomy of my right..."
@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
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@ebdent88 How are you doing now? Any shrinkage of tumor? Would you have same treatment again? Thank you.