Just diagnosed with stage 4 kidney cancer: What treatments help?

Hi Ron,
I just joined Mayo Connect. My husband’s renal cancer was found when he began having double vision. A tumor was found on his pituitary gland when he had an MRI of the brain. He had surgery for what was a suspected benign adenoma on the pituitary. Surprise! The pathologist called the surgeon down to say it was a metastatic renal cancer. The kidney and tumor was removed and a PET scan showed tumors in the lungs, abdominal lymph nodes, and opposite adrenal gland. Initially he was treated with focused beam radiation to the pituitary and adrenal gland. We then transferred care to Mayo Clinic. Initially, he was on Cabometyx (TKI) and Keytruda( immunotherapy). This combination was working very well and one of the smaller lung tumors even disappeared. He developed the hand/ foot syndrome with blisters and pain and eventually liver and kidney abnormal lab results so he had to go off that. He also was on Lenvima for awhile with good results. He is now on a new class of drug, Welireg. His tumors are stable and we have been battling this for 5 1/2 years now. We are so blessed and thankful he is still here to continue the battle. Take heart that every time you think there is little hope, God and medical science seem to provide additional help. May you achieve excellent results with whatever you and your doctors think is the best treatment for you.

Thank you and best of luck to you as well. Quite a journey.

Dave's hip pain was actually due to a hairline fracture on the iliac crest of his pelvis. There was lesion there. Diagnosed by a CT. Did a full body CT and found a kidney lesion. Biopsy on pelvic lesion evidence RCC. Had radiation to pelvic lesion. Now attacking RCC with chemo/immunotherapy. Have no idea if CKD could aggravate rheumatoid arthritis, but worth asking the doctor. Thanks for your reply to us. Stay strong!

I have a question for you. I have 4th state CKD, along with MDS (just diagnosed. Informed yesterday that I have a complex cyst on my kidney too. I also have hip pain that has been diagnosed as rheumatoid arthritis, but not sure if it this or has something to do with the CKD. I am waiting for Mayo to confirm a visit for second opinion. Thank you for your comments.

Hi, this is Koke and thank you for asking me to respond to all of us living life with kidney cancer. I am 2 1/2 years into my journey, starting with the diagnosis, the biopsy, the complete removal of my right kidney and then the progression of it spreading to lymph nodes around my lungs. How I feel now vs the beginning, is night and day. I research. I read. I very very mindful of living a calm, happy, healthy life (I've really put things in perspective). We are very thankful for the drugs that are saving our lives and the same drugs that have damaged pieces of my body because with the good, I did get some bad. It is a balancing act. An ongoing balancing act.
I was 62 when diagnosed and did keep up with people 30 years younger. I felt great. One day I had blood in my urine and that day changed my life. I am now 65. I take 20 mg cabo daily. I started with 40 mg which completely knocked me out thus my oncologist assured me it was ok to reduce to taking 20mg. I feel just fine. Three months after I started cabo, I started immunotherapy bc cancer traveled to my lymph nodes near my lungs. Within the first 3 months of taking immunotherapy every 4 weeks, the cancer disappeared (I had a complete response) but I stayed on nivolumab (my immunotherapy) for a year. I had several side effects the first go around with the biggest being I have adrenal insufficiency caused by the nivo. I don't produce the hormon cortisol which is needed to survive. I take pills everyday to produce this hormone. I have had a lot more 'issues' with this so please ask if your interested.
I was off the immunotherapy for 9 months after taking it one full year, when the cancer was spotted again around the same spot. In 12/24, I started back on immunotherapy. I have had several complications between January and now. I got VERY sick which turned into sepsis. I was in the ICU and hospitalized for 5 days. After that, I am now battling with pancreatitis which we believe is the result of immunotherapy. Like I said … drugs that kill the cancer have been the same drugs that effect my healthy parts too. This is where I am at and I'm ok. I make myself get up, I eat right, I walk and can't do what I used to do (makes me mad) but I'm very very grateful to be alive every day!
DO NOT LISTEN to any 'terminal' language. We all have our own journey. Everyone responds differently but everyone's course is different too. I can on and on but I couldn't even say "cancer" at the beginning. Please...as I read this blog every day, if have any questions, I'd be glad to comment.
Enjoy this day. I'm in Ohio. The daffodils are up, the birds are singing and it snowed just a dusting last night....I'm ready for spring!

Thank you! Minimal side effects for Dave so far. But only in third day after infusion and start of Cabo. So good to be able to find others for info and experience. Good thoughts to you too.

Thanks for the response. Hip pain reduced significantly. Still there, but minimal. Started Cabo and Opdivo two days ago. No reaction so far, but only two days. Cabo is 20mg daily right now. Supposed to go to 40mg in two weeks. If side effects minimal, going to ask oncologist if can stay at 20mg. Wonderful folks at infusion center. Infusion is 240mg. Only took 30 minutes. Port was a good thing to do.

@debet, you're right that many advances have been made, not only in cancer treatments, but also in helping to manage side effects. I'm bringing @koke into the discussion. They have experience with cabometyx and Opdivo.

How is treatment going? Has the hip pain been reduced? How are YOU doing?

Not sure I can offer anything; I've only had one treatment but not a lot of side effects from it yet. Mainly feeling tired and joint pain, vomiting just once. Still able to work full-time.

I like the idea of my treatment only attacks the cancer cells unlike chemo or radiation that kills good and bad cells.

Stay positive and strong, there are new drugs coming out all the time.

My 82 year old husband has just been diagnosed. Hip pain which was from a lesion that biopsy confirmed started from the kidney. Getting radiation now to hip. Will start chemo (cabometyx) and immunotherapy (opdivo) first of April.

We both lost prior spouse to cancer (pancreatic and ovarian). He is remembering the treatment from 20-30 years ago. We know there have been advancements.

We’ve read the side effects from the treatments. Not having issues with radiation and are halfway through.

Any advice?