Kidney cancer patients: Let's connect and introduce yourself

I have just been diagnosed with a kidney cancer. The Doc hasn’t decided what kind of medication/treatment that is applicable for me yet. But I have planned to tell my Doc that I want the cancerous kidney removed by surgery. What do you think? Please comment. Thank you!

Thanks; I appreciate the information on this very difficult decision I have to make. At my age of 81 I am very concerned with the after effects of the surgery and recovery times and pain. I appreciate your sharing this information with me.

I had stage 3 cancer on my left kidney, and it was removed at Cleveland Clinic June 20, 2017. Surgery was uneventful, but the surgeon made an error and nicked something that caused kyle fluid to seep into my abdomen. This required a "draining" of fluid every 7-10 days from June to Sept, 2017 as they tried ways to stem the seepage. Finally, doctors fed me through a vein in my arm for 8 hours every night from Thanksgiving and the leak finally sealed itself in January. During this time, I was not being treated for the cancer, and lost 60 pounds from the surgery and subsequent treatment to stop the leak.
Once the leakage was stopped, I was worn out and very debilitated. After a few months, the doctors found "spots" of renal cell cancer in my left lung. Surgery removed three nodules - one cancerous, two were not. After a few more months, they found new "spots" on my pancreas and spleen. During this time, and continuing through today, I have undergone immuno-therapy with Opdivo infusions monthly and Cabometryx pills (started with 40mg, but later dropped to 20mg). MRIs and CT Scans every 3 months showed a slowing and reversal as the cancer started, and continues to shrink.
After 22 months of treatment, the cancer still shows a few spots on the spleen, pancreas and lungs. I have regained my weight and some of my energy, and my coloring has returned. I was told that immuno-therapy (Opdivo) normally ends at 24 months, but the plan is to continue with Cabometryx as long as it continues to work.
So, I am at the best I have been since my surgery, and are coming up to 6 years, after losing almost a year after the surgical issues, which really held back effective cancer treatment.

Thanks.

Hi! I’m 63 and not sure if I my info will help or not. I had my kidney out last October. I was very tired and could hardly walk for about 2 weeks. I got up every day and pushed a little farther. Within a month, I felt good. My cancer has now spread to a tumor attached to my lung. I am taking a target drug and an IV immunotherapy drug. After 6 weeks, I’m pretty wiped out. The drugs are hard but if they kill the cancer, I’m ok with feeling lousy.
I believe in prayers and listening to God. You’ll find your answer! Koke

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, thank you for your response. I am taking cabometyx and opdive. This is my 5th week and 2 IV’s. I was diagnosed with kidney cancer in September, kidney removed end of October and confirmed cancer spread in March. I’d really like to share stories with other kidney cancer patients. It has helped me!

Koke,
Thank you for responding. My husband never had the metal taste in his mouth but I have read that could be one of the side effects. He did have diarrhea, sores in his mouth, sores/rash on his arms and legs, foggy brain and no appetite. He ended up losing around 50 pounds. Finally with the lack of energy and his thyroid starting to get at low/high levels they took him off the treatment.
The drugs did a mental job on him as well. It seemed to affect his moodiness and his memory? But then again, it could be his age (he will turn 67 this year). I think between hearing you have cancer and wrapping your head around that, on top of the treatments.... well it is a lot to deal with.
Are you doing Keytruda and Lenvima or do they have you on something else? I really hope your cancer reacts to these new drugs and yes, I hope that it kills the cancer. Cancer is so scary but I believe these new drugs seem to offer a lot of hope and promise! I hope you can stay as positive as a person can going through what you are going through and that you have a good support system. That ALWAYS helps. Always hear if you would ever want to discuss anything or have questions. I will answer to the best of my ability.
Always hoping for the best,
Nancy

Thank you Nancy for such a nice response:). It’s this type of info that’s gives me the most strength! I pray your husband will continue having a positive response from these drugs!
I am currently doing what your husband did with the drugs since mine too has moved to my lungs. It’s only been a month and the drugs are doing a job mentally. I always feel like I’m in a fog.
I just want it to kill the cancer!
I constantly have a metal taste in my mouth and haven’t found a solution. Did this happen to your husband? I could ask you lots of questions. I so appreciate you reaching out.
Koke

I had kidney cancer and 2 month's ago I was done in Rochester to get it removed. I has a mass on my kidney and they got it all and left the kidney.. I'm not doing any treatment. They're just watching it more