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Want to connect with kidney cancer patients
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!
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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.
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.
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.
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’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
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 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.
Hi does the immunotherapy really help?
Did you do immunotherapy?
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.