Kidney cancer patients: Let's connect and introduce yourself

I Koke,
My husband was also diagnosed with stage 4 kidney cancer in August 2021. He had his left kidney removed but the cancer had spread to his lungs. He took immunotherapy Keytruda and target therapy Lenvima for about 7 months until the side effects caused them to take him off. That was a year ago and so far the treatment has kept his cancer at bay and there is no new spread. We now go back every 4 months for scans. His next one is this June. If you have any specific questions I am willing to discuss what we went through and what we know, if that might help. Very scary to hear this news but I believe that target and immunotherapy are relatively new treatments for this type of cancer and I believe it is a welcome treatment to combat this terrible disease. Please reach out if you would like to talk or if you have any questions. - Nancy

Seems everyone has different reactions to the meds, but I agree that the minor inconveniences of opdivo/cabometryx are outweighed by the results. Sad that the treatment is so expensive and we are so dependent on insurance (and sorry for many patients who do not have good insurance).
I have had many reactions in the last two years and they seem to come and go, with tiredness, weight loss, and occasional nausea the most frequent.

I’ve been taking cabo daily and get my immunotherapy drug (opdivo) every 4 weeks. I’ve done this for 3 months and have CT scan this Thursday. I believe my dr is going to continue with both drugs even if scan results are good. The combination of both drugs costs $100,000 monthly. I’m very thankful my insurance is covering these outrageous costs! Since taking these drugs, I get tired easily, have a constant raspy voice and cough and only eat very limited food since other food tastes terrible and/or ‘burns’ inside of mouth. I don’t care about all these side effects if they are attacking the cancer. It sounds like we all have different stories and has helped me learn from us who are traveling down this same road. Thank you all for sharing and hope we continue to. Koke

I know one day of immunotherapy opdivo and lab work is over $69,000 in Cleveland, which insurance covers, but I am also sure that the insurance would love to see it cost less with just cabometryx. I plan talking to the oncologist to try to extend the current treatment. We will see what they say.

I have been on opdivo and cabometryx for two years now. The original renal cancer was removed with surgery, then the cancer moved into the lungs (had a "spot" removed with minor surgery) and now has settled into the spleen and pancreas. The Opdivo/Cabometryx immunotherapy which I have been taking for two years has shrunk the renal spots on the spleen and pancreas, but now the doctor wants to discontinue the Opdivo. His comment was that Immunotherapy normally is for two years and then continue with Cabometryx.
My question is why, if the Opdivo/Cabometryx mix is working, do we want to change things?
Is this an insurance thing or does it have something to do with long-term immunotherapy affecting the body? I plan to trying convincing him to continue what's working.

I have been on opdivo and cabometryx for two years now. The original renal cancer was removed with surgery, then the cancer moved into the lungs (had a "spot" removed with minor surgery) and now has settled into the spleen and pancreas. The Opdivo/Cabometryx immunotherapy which I have been taking for two years has shrunk the renal spots on the spleen and pancreas, but now the doctor wants to discontinue the Opdivo. His comment was that Immunotherapy normally is for two years and then continue with Cabometryx.
My question is why, if the Opdivo/Cabometryx mix is working, do we want to change things?
Is this an insurance thing or does it have something to do with long-term immunotherapy affecting the body? I plan to trying convincing him to continue what's working.

Sounds familiar to what I'm going through. I have noticed my voice is kinda raspy. My last CT showed a tumor on my kidney, and lungs and lymph nodes. I'm 59 and I'm quitting work to focus on my health. Good luck on your journey. It does feel good to converse with someone who is going through the same thing. Take care.

Thank you for sharing. My cancer has spread to a lymph node in between lungs. I have been taking daily target drug (cabometyx) and an IV immunotherapy drug every 4 weeks. Scans scheduled for next week to see what cancer has done? I didn’t think cancer could go to other kidney? I live very much day by day and try to enjoy life each day! It’s hard some days when I don’t feel great. The drugs have slowed me down, make me tired, changed my voice, constant cough and harder breathing. Every day I wonder how I feel but keep praying these drugs are getting rid of the cancer!
Enjoy your day. It helps a lot to share with people who live with KC too . Thank you!

I was diagnosed last November with RCC, had my right kidney removed. A follow-up CT scan showed tumors on both lungs and in shoulder muscle. I did 3 months of immunotherapy using yervoy and opdivo. The next 3 months was a double dose on opdivo. Latest CT scan showed that tumors had increased in size and a new growth on my remaining kidney. So started on the chemo pill. So hopefully this will slow the progression.