Kidney cancer patients: Let's connect and introduce yourself

Hello, I Had stage 4 synovial sarcoma in my left kidney with Mets.

Welcome @koke. Allow me to tag a number of members who have experience with kidney cancer along with @emily29. @bomed @b1375911 @racing212 @lkhanson @pml @nang @sally0526 @pcondon @collegeprof @azkidney57 @nang @w5wiggi @paulinlouisiana @mb4414 @pamcaponio @tenniswood @cindysummit @mrodriguezc can also share their diagnosis and the treatments they've had.

Koke, which targeted therapy and immunotherapy drug are you taking? Did you have surgery?

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

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

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

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

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!

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! 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

Thanks.