1. < Kidney Cancer

Kidney cancer patients: Let's connect and introduce yourself

Posted by koke @koke, May 2, 2023

I have stage 4 kidney cancer. Taking target and immunotherapy drugs. Would love to connect with anyone who is going through the same process or has kidney cancer!

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

buckeyeveteran | @buckeyeveteran | Jun 18, 2023
In reply to @rtw1268 "Sounds familiar to what I'm going through. I have noticed my voice is kinda raspy. My..." + (show)
@rtw1268

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.

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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.

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2 replies
rtw1268 | @rtw1268 | Jun 19, 2023
In reply to @buckeyeveteran "I have been on opdivo and cabometryx for two years now. The original renal cancer was..." + (show)
@buckeyeveteran

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.

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I started out yervoy&opdivo,then just opdivo, now 8 months in just the cabomertx. Hopefully this will get some results. I know the immunotherapy is real expensive so it might be an insurance issue. Got 10 weeks before my next. Hopefully the results are better than the last 2 scans.

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ronsale | @ronsale | Jun 19, 2023

I was diagnosed with kidney cancer two months ago. I still have not decided what to do; because of my age of 81 and having just last year had radiation treatment for prostate cancer I don't know if I want to go through the removal of kidney.

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buckeyeveteran | @buckeyeveteran | Jun 20, 2023
In reply to @buckeyeveteran "I have been on opdivo and cabometryx for two years now. The original renal cancer was..." + (show)
@buckeyeveteran

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.

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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.

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1 reply
koke | @koke | Jun 20, 2023
In reply to @buckeyeveteran "I know one day of immunotherapy opdivo and lab work is over $69,000 in Cleveland, which..." + (show)
@buckeyeveteran

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.

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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

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1 reply
buckeyeveteran | @buckeyeveteran | Jun 20, 2023
In reply to @koke "I’ve been taking cabo daily and get my immunotherapy drug (opdivo) every 4 weeks. I’ve done..." + (show)
@koke

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

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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.

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1 reply
koke | @koke | Jun 20, 2023
In reply to @buckeyeveteran "Seems everyone has different reactions to the meds, but I agree that the minor inconveniences of..." + (show)
@buckeyeveteran

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.

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I don’t know what I’d do without insurance. It’s a crazy game:(. I wanted to share that I am in Columbus and go to The James since I noticed you too are in Ohio.

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freda73 | @freda73 | Jun 20, 2023
In reply to @nang "I Koke, My husband was also diagnosed with stage 4 kidney cancer in August 2021. He..." + (show)
@nang

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

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Hi does the immunotherapy really help?

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1 reply
freda73 | @freda73 | Jun 20, 2023
In reply to @rmlieberenz "I had my kidney removed ten years ago and have never regretted that move. However must..." + (show)
@rmlieberenz

I had my kidney removed ten years ago and have never regretted that move. However must remember that leaves you with just one kidney

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Did you do immunotherapy?

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NanG | @nang | Jun 21, 2023
In reply to @freda73 "Hi does the immunotherapy really help?" + (show)
@freda73

Hi does the immunotherapy really help?

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Yes, he did immunotherapy (Keytruda) and target (Lenvima). When he was first diagnosed the cancer had spread to his left lung where he had multiple small tumors and a larger 1.6 cm tumor. After taking the treatment all the tumors except the large one was gone and the large one had shrunk to .9 cm and has not changed in over one year. So it made some go away, and one shrink and it continues to be stable. So it appears it's working. I can't say everyone would have the same results but for him it was as good as we hoped for.

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