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 22, 2023

Immunotherapy has been working for me. I just passed two years this months on Opdivo and Cabometryx, and seem to be worlking as the cancer cells are shrinking. However, I firmly believe that you can say that the cancer is "gone", as it can pop up somewhere else at any time.
I did get good news today, as my oncologist, who told me that anti-cancer immunotherapy normally drops off after two years, and mine would end in July, relented and told me that we can continue with what is working.
Good sense from Cleveland Clinic. Fight, Fight, Fight... Never give up...

NanG | @nang | Jun 21, 2023

In reply to @freda73 "Hi does the immunotherapy really help?" + (show)

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.

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)

Did you do immunotherapy?

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)

Hi does the immunotherapy really help?

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)

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.

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)

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.

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)

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

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)

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.

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.

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)

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.