Clear cell renal carcinoma metastasized to lung

Ash02 Member Posts: 1

I am new to this forum. I am 29 and was diagnosed with clear cell renal carcinoma at 27. I had a total right nephrectomy. Then found out a few months later it metastasized to lungs/lymph nodes. (Stage lV) I have done Sutent with mixed results opdivo with mixed results and recently went to the NIH in D.C for immunotherapy but found it didn’t quite work. Now I will be starting new medication carbozsntinib. 


If if anyone has this same type of cancer please consider going to the NIH in Washington D.C for the clinical trial there. They are accepting new people and are trying higher doses for immunotherapy. 


  • MarkDavid18
    MarkDavid18 Member Posts: 61
    RCC in your 20s - WTF!!

    This cancer is a real B!! My RCC was discovered at 39 but based on size they thought the tumor may have been growing for 5 to 10 years. I am so sorry you are having to face this battle already. I have had some amazing results on ipi/nivo (Yervoy + Opdivo). Did they try this combo? I have had 3 of the 4 infusions and I have seen the tumor in my thigh shrink and my lung capacity has improved significantly with almost no dry coughs anymore. I haven’t had any scans since June so I can’t confirm the results but I feel amazing. I dont have CC - mine is unclassified with sarcomatoid features. I just read an article posted on Smart Patients about the incredibly promising results of this combo immunotherapy.  Good luck with your battle. We can beat this thing.