Kidney cancer patients: Let's connect and introduce yourself

Thank you for reaching out. I have stage IV kidney cancer diagnosed 9/22. My right kidney was removed 10/22. Cancer is very very scary…what you read on the web can be even more scary! So..I limit my reading, I enjoy every day, I can’t think about statistics and I’m very thankful I feel good most days! At first I was a very very scared sad mess so give yourself some grace. It helped me to learn about my cancer, ask my dr lots of questions and only read ‘trusted’ websites.
Now 2. 1/2 years later…I pop my pills, say a prayer, thank God for another day and enjoy most🙏. So…that my short story. I understand how you feel and it’s just scary at first. Everyone handles it differently. I pray over time you’ll also find your peace🙏 koke

Good morning everyone. I am new to the group. 44 year old mom to 3 and a brand new MiMi to a beautiful baby girl. I was found to have had a 10 cm mass on my left kidney at the end of Aug 2024. Oct. 16 I had my left kidney removed along with the 13 cm mass. It is stage 4 and in the part of the renal vein that was left as well as the vena cava. I have had 2 doses of immunotherapy with my 3 does this week. I have good days and then I have pity-party days. Everything I read about cancer and stage 4 is depressing and I would like to hear some success stories, if that makes any sense.

@theresa2346, how are you doing on Inlyta and Keytruda?

Hi Theresa. My name is Robin, and my kidney cancer was thought to be Stage 1, but after the right kidney was removed, I was told it was Stage 3. I, too, am on Keytruda, but nothing else so far. The treatments are once every 3 weeks, and are not too bad. I’ve had some itching and rash, but overall - doing well. I prepared Thanksgiving dinner for my family, and became sick that evening with what I thought to be a cold. It’s still with me, and sometimes a cough, but the nurses did not think it was anything to worry about at my last infusion. My PCP gave me an antibiotic, but it didn’t help, but other than that and some fatigue, the Keytruda seems to be the best option. I hope it agrees with you as well. Please take care of yourself, and remember that YOU are your absolute best advocate. If you have questions, please ask. The people taking care of us have a wealth of information, and most of them don’t mind answering questions. Sending best wishes and heartfelt prayers! Robin

I had my right kidney removed almost 2 1/2 years ago. About 2 months after it was removed, it spread to a lymph node near my lungs so I immediately started cabometyx (chemo) and nivolumab (immunotherapy). I’m still on the chemo and after about a year on the immunotherapy, I stopped since my cancer was in remission. It’s now 9 months later and my cancer is back with another spot near my lungs:(. Last week I started immunotherapy again. I’m upset, sad, mad and sad…and just sad since this is my story. I want the cancer to never come back and I’m so grateful it went away once. This is just the way it’s going to be. I’m a fighter and have a strong faith🙏. I pray for all of us…

I also have stage 4 kidney cancer. I take Inlyta and Keytruda for treatment. I'm also scheduled to have my right kidney removed in February. Are you doing similar treatments?

Koke, thank you for your reply. Sometimes it helps to know that others have some knowledge of the loneliness of this journey, but it also makes my heart ache for you, as well. My prayers will be with you. You are so right - God always has a plan. We all go thru a lot of stuff that is not intended for us at all, but to help someone else along the way. God’s plan is always best, even when it’s uncomfortable. Robin

Hi and I’m so glad you posted your story. Cancer is a lonely journey if you do it by yourself. My husband didn’t understand ‘my mind’ as I processed having stage IV kidney cancer.
This forum helps me to hear from others who have the same cancer, take similar drugs, feel the way I do or have felt. And can answer questions since someone has gone down the same road as me!
I too have become very tired. The meds have medically made me very tired and sick. I keep my drs up to date on all side effects…they’ve changed my life but not me.
I hold tight to my faith and that keeps me grounded. I know God has a plan…
Praying for you! Koke

I’ve been dealing with Stage 3 kidney cancer for nearly a year now - actually learned the diagnosis on February 1st, 2024. My right kidney was removed at the end of March, and the surgeon called me two days later to say that it was a good thing he decided to remove the whole kidney because the tests came back that it was a Stage 3 cancer. I’m in immuno-therapy now, after seeking an oncologist on my own, but find this to be a very lonely journey. My health overall seems okay, but I get so tired. I am 68 and still working full time. My husband knows my diagnosis, but refuses to talk about it, and can’t understand my inability to keep up with all of my previous workload. He refuses to learn how to do anything to help me, and does not want to talk about this situation. I have no one else that I can talk to, but my faith keeps me going.I know he is in denial and wants everything to remain the same. Does anyone else deal with this, and if so, are there any suggestions?

I was rereading posts since my original back in May ‘23.
Living with cancer has changed so many things in my life simply because of all my drs, prescriptions and change in my health. But inside, I’m still me and I am so blessed to wake each day and feel pretty good. The meds and weird reactions to them are the main cause of ‘feeling different’ and it keeps changing!
I just found out my cancer has returned…going back in immunotherapy on Tuesday. I’m mentally adjusting ‘again’.
Life with cancer….i take it a day at a time and pray for all of us!
Koke