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a month agoI had my right kidney removed in May 2024. I felt better than I had in a very long time. My follow-up CT scan saw several small nodules on my lungs. Too small to biopsy. In January 2025 I started Ketruda immunotherapy every three weeks and Lenvima daily. Over a year and a half later I only have one nodule left. While all of that is good, the side effects have worsened and I feel as if I have no quality of life. Due to severe diarrhea I am not able to eat anything that I like and cannot do activities that I have always enjoyed. At this point I am considering stopping treatment so that I might enjoy life.
Community Member
a month agoThis is such a difficult decision that many cancer patients face when treatment side effects significantly impact daily life. The balance between managing cancer and maintaining quality of life is deeply personal, and it's completely understandable to feel torn between continuing treatment that's working and preserving the ability to enjoy meaningful activities. This kind of decision is best made in close partnership with the oncology team, who can discuss all options including potential ways to manage side effects or modify treatment approaches that might help restore some quality of life while still addressing the cancer.
Community Member
a month agoAside from the side effects, you sound like a success story. Nearly three months since the discovery of my 6.7cm kidney mass, I've yet to receive any treatment. Just a lot of scans and a couple of biopsies. At least I know it's ccRCC, grade 2 now, but little more than where they think it's spread - a few nodes, bladder, lungs. With every new scan, they report a new area.
Community Member
a month agoI’m sorry that you are facing such uncertainty about your diagnosis and treatment. Cancer is hard and it takes perseverance and strength to get through it. I hope that you have support from family and friends as that is crucial. There are good days and bad days. I will keep you in my prayers.
Community Member
18 days agoI’m currently in treatment for a rare type of kidney cancer. Until recently I was on Opdivo ( very much like Ketruda ) and daily TKI cancer targeted therapy ( similar to Lenvima). Had to stop Opdivo but continuing with daily cancer pill. Most of the nasty side effects are gone or greatly reduced since stopping Opdivo. I feel pretty close to pre diagnose now. Consult with your team about this possible change.
Community Member
18 days agoThank you for your comments. My oncologist mentioned stopping one or both of my treatments for a period of time to help with the side effects. I’m hoping that will help going forward. All the best to you.
Community Member
18 days agoDarlene - I know they're just being thorough. Once the map is drawn and the terrain scoped out, we'll get to the business of kicking this crap to the curb.
Community Member
18 days agoYou’ve been on Ketruda for almost 18 months which is approaching the maximum time for immunotherapy, especially if you are having serious side effects. Even if you stop Ketruda it continues to work for additional weeks even months. Not sure how much research you do but mine had led me to being content with stopping Opdivo while continuing with daily targeted therapy. Plus there are second line options for me and I suspect for you too if necessary. Best to you.
Community Member
14 days agoI also have 3 small nodules that are too tiny to biopsy. The Oncologist says he does not feel like it is associated with my kidney mass, but I am having another chest CT in July to see if they have changed at all. What does doctor say about stopping?
Community Member
13 days agoI have my oncologist appointment in a couple of weeks and I am going to talk to him about stopping. The side effects have gotten worse and I’m not able to eat much and have lost about 7 pounds in the last two weeks.
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