Kidney cancer patients: Let's connect and introduce yourself

Five years ago, when I was 67 my left kidney was removed. The tumor was the size of a football and my diagnosis was stage 3 kidney cancer. I was a body builder at the time and in excellent health. I stayed in the hospital a week, in bed for two weeks and mostly in bed for two more weeks. My pain level ranged between 4-8. The initial pain from surgery was worse than giving birth😅. Morphine drips make it all possible. I still have an abdominal muscle that “catches” and my left abs are weaker. The right side of my body compensates for that weakness and my shoulder to my ankle ache if I’m not careful to stretch and exercise. As you know, it is a commitment to constant self care. When I have gas from chemotherapy, a small part of my large intestine on the left is painful and an anti gas pill takes care of it. That surgery was followed by a year of a chemotherapy pill. A year ago it was determined that the cancer had metastasized, stage 4, and a lesion on my kidney was removed. I am not the body builder that I was five years ago, but after surgery I was near a bed for a week. It would have been easier if I had taken Senna-S right after surgery. The residual nerve pain lasted about a year. My pain level during that time ranged between 0 and 4 and I have a high tolerance for pain.
I followed that surgery with immunotherapy infusions (KeyTruda)and Inlyta for half-a-year until my immune system attacked my liver. I am still using prednisone to counteract that destruction. I have been taking Lenvima and Everolimus the last five months and the other lesions are shrinking or staying the same. When I can keep the chemotherapy side affects to a minimum, life is good and some days, wonderful . I understand your concerns about surgery and your decision not to do chemo. The “quality/quantity of life decisions” that I make as I dance a last Tango with this disease, are always focused on quality. I have learned to quickly initiate discussions with my Doc regarding chemo reductions, increased supplements, integrated medicine and chemo side affects to better support the quality of my life. It is a commitment to a roller coaster. It’s believing two contradicting theories at the same time and It is not a singular journey. I have friends and family who support me in so many ways. Because my cancer seems to be slow-growing I often wonder what my life would be like without chemo. I will want to know what you decide and how your Tango goes. Have you gotten a second opinion about removing the lesion instead of the kidney?

I was diagnosed after biopsy a few weeks ago as having a lesion on my left kidney that has high grade carcinoma. Urologist said that I need to have the kidney removed. I am in the process of making a decision. Since I am 81 and was treated with radiation for prostate cancer a little over a year ago, I am very concerned about how long the recovery period will be and how difficult and painful and life changing it will be at my age. I have a chest CT scan scheduled in a week and have to have kidney stent removed in the next couple of months. As doctor said this is a treatment and not a cure; I already told him that I don't want any type of chemo. I am wondering that what I can expect if I go through with the procedure in the next couple of months.

Hi does the immunotherapy really help?

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

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.